Teledermatology During the COVID-19 Pandemic: Lessons Learned and Future Directions

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Teledermatology During the COVID-19 Pandemic: Lessons Learned and Future Directions

Although teledermatology utilization in the United States traditionally has lagged behind other countries,1,2 the COVID-19 pandemic upended this trend by creating the need for a massive teledermatology experiment. Recently reported survey results from a large representative sample of US dermatologists (5000 participants) on perceptions of teledermatology during COVID-19 indicated that only 14.1% of participants used teledermatology prior to the COVID-19 pandemic vs 54.1% of dermatologists in Europe.2,3 Since the pandemic started, 97% of US dermatologists reported teledermatology use,3 demonstrating a huge shift in utilization. This trend is notable, as teledermatology has been shown to increase access to dermatology in underserved areas, reduce patient travel times, improve patient triage, and even reduce carbon footprints.1,4 Thus, to sustain the momentum, insights from the recent teledermatology experience during the pandemic should inform future development.

Notably, the COVID-19 pandemic led to a rapid shift in focus from store-and-forward teledermatology to live video–based models.1,2 Logistically, live video visits are challenging, require more time and resources, and often are diagnostically limited, with concerns regarding technology, connectivity, reimbursement, and appropriate use.3 Prior to COVID-19, formal Health Insurance Portability and Accountability Act–compliant teledermatology platforms often were costly to establish and maintain, largely relegating use to academic centers and Veterans Affairs hospitals. Thus, many fewer private practice dermatologists had used teledermatology compared to academic dermatologists in the United States (11.4% vs 27.6%).3 Government regulations—a key barrier to the adoption of teledermatology in private practice before COVID-19—were greatly relaxed during the pandemic. The Centers for Medicare and Medicaid Services removed restrictions on where patients could be seen, improved reimbursement for video visits, and allowed the use of platforms that are not Health Insurance Portability and Accountability Act compliant. Many states also relaxed medical licensing rules.

Overall, the general outlook on telehealth seems positive. Reimbursement has been found to be a primary factor in dermatologists’ willingness to use teledermatology.3 Thus, sustainable use of teledermatology likely will depend on continued reimbursement parity for live video as well as store-and-forward consultations, which have several advantages but currently are de-incentivized by low reimbursement. The survey also found that 70% of respondents felt that teledermatology use will continue after COVID-19, while 58% intended to continue use—nearly 5-fold more than before the pandemic.3 We suspect the discrepancy between participants’ predictions regarding future use of teledermatology and their personal intent to use it highlights perceived barriers and limitations of the long-term success of teledermatology. Aside from reimbursement, connectivity and functionality were common concerns, emphasizing the need for innovative technological solutions.3 Moving forward, we anticipate that dermatologists will need to establish consistent workflows to establish consistent triage for the most appropriate visit—in-person visits vs teledermatology, which may include augmented, intelligence-enhanced solutions. Similar to prior clinician perspectives about which types of visits are conducive to teledermatology,2 most survey participants believed virtual visits were effective for acne, routine follow-ups, medication monitoring, and some inflammatory conditions.3

Importantly, we must be mindful of patients who may be left behind by the digital divide, such as those with lack of access to a smartphone or the internet, language barriers, or limited telehealth experience.5 Systems should be designed to provide these patients with technologic and health literacy aid or alternate modalities to access care. For example, structured methods could be introduced to provide training and instructions on how to access phone applications, computer-based programs, and more. Likewise, for those with hearing or vision deficits, it will be important to improve sound amplification and accessibility for headphones or hearing aid connectivity, as well as appropriate font size, button size, and application navigation. In remote areas, existing clinics may be used to help field specialty consultation teleconferences. Certainly, applications and platforms devised for teledermatology must be designed to serve diverse patient groups, with special consideration for the elderly, those who speak languages other than English, and those with disabilities that may make telehealth use more challenging.

Large-scale regulatory changes and reimbursement parity can have a substantial impact on future teledermatology use. Advocacy efforts continue to push for fair valuation of telemedicine, coverage of store-and-forward teledermatology codes, and coverage for all models of care. It is imperative for the dermatology community to continue discussions on implementation and methodology to best leverage this technology for the most patient benefit.

References
  1. Tensen E, van der Heijden JP, Jaspers MWM, et al. Two decades of teledermatology: current status and integration in national healthcare systems. Curr Dermatol Rep. 2016;5:96-104.
  2. Moscarella E, Pasquali P, Cinotti E, et al. A survey on teledermatology use and doctors’ perception in times of COVID-19 [published online August 17, 2020]. J Eur Acad Dermatol Venereol. 2020;34:E772-E773.
  3. Kennedy J, Arey S, Hopkins Z, et al. Dermatologist perceptions of teledermatology implementation and future use after COVID-19: demographics, barriers, and insights. JAMA Dermatol. 2021;157:595-597.
  4. Bonsall A. Unleashing carbon emissions savings with regular teledermatology clinics. Clin Exp Dermatol. 2021;46:574-575.
  5. Bakhtiar M, Elbuluk N, Lipoff JB. The digital divide: how COVID-19’s telemedicine expansion could exacerbate disparities. J Am Acad Dermatol. 2020;83:E345-E346.
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Author and Disclosure Information

Dr. Hopkins is from the Department of Dermatology, Broward Health Medical Center, Fort Lauderdale, Florida. Dr. Han is from the Department of Dermatology, Northwell Health, New Hyde Park, New York. Dr. Tejasvi, Ms. Deda, and Ms. Goldberg are from the Department of Dermatology, University of Michigan, Ann Arbor. Mr. Kennedy, Ms. Arey, and Dr. Farah are from the Division of Dermatology, SUNY Upstate Medical University, Syracuse, New York. Drs. Mathis and Secrest are from the Departments of Dermatology and Population Sciences, University of Utah, Salt Lake City. Ms. Balk and Dr. Miller are from the American Academy of Dermatology, Chicago, Illinois. Dr. Lipoff is from the Department of Dermatology, Perelman School of Medicine, University of Pennsylvania, Philadelphia.

Drs. Hopkins, Mathis, and Secrest, as well as Ms. Deda, Ms. Goldberg, Mr. Kennedy, and Ms. Arey report no conflict of interest. Drs. Han, Tejasvi, Farah, and Lipoff are current or recent members of the American Academy of Dermatology Teledermatology Task Force. Dr. Lipoff also is a member of the American Academy of Dermatology Ad Hoc Task Force on COVID-19 and has served as a paid consultant on telemedicine for Havas Life Medicom and as a telemedicine advisor for AcneAway, a direct-to-consumer teledermatology start-up. Ms. Balk and Dr. Miller are employees of the American Academy of Dermatology.

Correspondence: Jules B. Lipoff, MD, Department of Dermatology, University of Pennsylvania, Penn Medicine University City, 3737 Market St, Ste 1100, Philadelphia, PA 19104 ([email protected]).

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Dr. Hopkins is from the Department of Dermatology, Broward Health Medical Center, Fort Lauderdale, Florida. Dr. Han is from the Department of Dermatology, Northwell Health, New Hyde Park, New York. Dr. Tejasvi, Ms. Deda, and Ms. Goldberg are from the Department of Dermatology, University of Michigan, Ann Arbor. Mr. Kennedy, Ms. Arey, and Dr. Farah are from the Division of Dermatology, SUNY Upstate Medical University, Syracuse, New York. Drs. Mathis and Secrest are from the Departments of Dermatology and Population Sciences, University of Utah, Salt Lake City. Ms. Balk and Dr. Miller are from the American Academy of Dermatology, Chicago, Illinois. Dr. Lipoff is from the Department of Dermatology, Perelman School of Medicine, University of Pennsylvania, Philadelphia.

Drs. Hopkins, Mathis, and Secrest, as well as Ms. Deda, Ms. Goldberg, Mr. Kennedy, and Ms. Arey report no conflict of interest. Drs. Han, Tejasvi, Farah, and Lipoff are current or recent members of the American Academy of Dermatology Teledermatology Task Force. Dr. Lipoff also is a member of the American Academy of Dermatology Ad Hoc Task Force on COVID-19 and has served as a paid consultant on telemedicine for Havas Life Medicom and as a telemedicine advisor for AcneAway, a direct-to-consumer teledermatology start-up. Ms. Balk and Dr. Miller are employees of the American Academy of Dermatology.

Correspondence: Jules B. Lipoff, MD, Department of Dermatology, University of Pennsylvania, Penn Medicine University City, 3737 Market St, Ste 1100, Philadelphia, PA 19104 ([email protected]).

Author and Disclosure Information

Dr. Hopkins is from the Department of Dermatology, Broward Health Medical Center, Fort Lauderdale, Florida. Dr. Han is from the Department of Dermatology, Northwell Health, New Hyde Park, New York. Dr. Tejasvi, Ms. Deda, and Ms. Goldberg are from the Department of Dermatology, University of Michigan, Ann Arbor. Mr. Kennedy, Ms. Arey, and Dr. Farah are from the Division of Dermatology, SUNY Upstate Medical University, Syracuse, New York. Drs. Mathis and Secrest are from the Departments of Dermatology and Population Sciences, University of Utah, Salt Lake City. Ms. Balk and Dr. Miller are from the American Academy of Dermatology, Chicago, Illinois. Dr. Lipoff is from the Department of Dermatology, Perelman School of Medicine, University of Pennsylvania, Philadelphia.

Drs. Hopkins, Mathis, and Secrest, as well as Ms. Deda, Ms. Goldberg, Mr. Kennedy, and Ms. Arey report no conflict of interest. Drs. Han, Tejasvi, Farah, and Lipoff are current or recent members of the American Academy of Dermatology Teledermatology Task Force. Dr. Lipoff also is a member of the American Academy of Dermatology Ad Hoc Task Force on COVID-19 and has served as a paid consultant on telemedicine for Havas Life Medicom and as a telemedicine advisor for AcneAway, a direct-to-consumer teledermatology start-up. Ms. Balk and Dr. Miller are employees of the American Academy of Dermatology.

Correspondence: Jules B. Lipoff, MD, Department of Dermatology, University of Pennsylvania, Penn Medicine University City, 3737 Market St, Ste 1100, Philadelphia, PA 19104 ([email protected]).

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Although teledermatology utilization in the United States traditionally has lagged behind other countries,1,2 the COVID-19 pandemic upended this trend by creating the need for a massive teledermatology experiment. Recently reported survey results from a large representative sample of US dermatologists (5000 participants) on perceptions of teledermatology during COVID-19 indicated that only 14.1% of participants used teledermatology prior to the COVID-19 pandemic vs 54.1% of dermatologists in Europe.2,3 Since the pandemic started, 97% of US dermatologists reported teledermatology use,3 demonstrating a huge shift in utilization. This trend is notable, as teledermatology has been shown to increase access to dermatology in underserved areas, reduce patient travel times, improve patient triage, and even reduce carbon footprints.1,4 Thus, to sustain the momentum, insights from the recent teledermatology experience during the pandemic should inform future development.

Notably, the COVID-19 pandemic led to a rapid shift in focus from store-and-forward teledermatology to live video–based models.1,2 Logistically, live video visits are challenging, require more time and resources, and often are diagnostically limited, with concerns regarding technology, connectivity, reimbursement, and appropriate use.3 Prior to COVID-19, formal Health Insurance Portability and Accountability Act–compliant teledermatology platforms often were costly to establish and maintain, largely relegating use to academic centers and Veterans Affairs hospitals. Thus, many fewer private practice dermatologists had used teledermatology compared to academic dermatologists in the United States (11.4% vs 27.6%).3 Government regulations—a key barrier to the adoption of teledermatology in private practice before COVID-19—were greatly relaxed during the pandemic. The Centers for Medicare and Medicaid Services removed restrictions on where patients could be seen, improved reimbursement for video visits, and allowed the use of platforms that are not Health Insurance Portability and Accountability Act compliant. Many states also relaxed medical licensing rules.

Overall, the general outlook on telehealth seems positive. Reimbursement has been found to be a primary factor in dermatologists’ willingness to use teledermatology.3 Thus, sustainable use of teledermatology likely will depend on continued reimbursement parity for live video as well as store-and-forward consultations, which have several advantages but currently are de-incentivized by low reimbursement. The survey also found that 70% of respondents felt that teledermatology use will continue after COVID-19, while 58% intended to continue use—nearly 5-fold more than before the pandemic.3 We suspect the discrepancy between participants’ predictions regarding future use of teledermatology and their personal intent to use it highlights perceived barriers and limitations of the long-term success of teledermatology. Aside from reimbursement, connectivity and functionality were common concerns, emphasizing the need for innovative technological solutions.3 Moving forward, we anticipate that dermatologists will need to establish consistent workflows to establish consistent triage for the most appropriate visit—in-person visits vs teledermatology, which may include augmented, intelligence-enhanced solutions. Similar to prior clinician perspectives about which types of visits are conducive to teledermatology,2 most survey participants believed virtual visits were effective for acne, routine follow-ups, medication monitoring, and some inflammatory conditions.3

Importantly, we must be mindful of patients who may be left behind by the digital divide, such as those with lack of access to a smartphone or the internet, language barriers, or limited telehealth experience.5 Systems should be designed to provide these patients with technologic and health literacy aid or alternate modalities to access care. For example, structured methods could be introduced to provide training and instructions on how to access phone applications, computer-based programs, and more. Likewise, for those with hearing or vision deficits, it will be important to improve sound amplification and accessibility for headphones or hearing aid connectivity, as well as appropriate font size, button size, and application navigation. In remote areas, existing clinics may be used to help field specialty consultation teleconferences. Certainly, applications and platforms devised for teledermatology must be designed to serve diverse patient groups, with special consideration for the elderly, those who speak languages other than English, and those with disabilities that may make telehealth use more challenging.

Large-scale regulatory changes and reimbursement parity can have a substantial impact on future teledermatology use. Advocacy efforts continue to push for fair valuation of telemedicine, coverage of store-and-forward teledermatology codes, and coverage for all models of care. It is imperative for the dermatology community to continue discussions on implementation and methodology to best leverage this technology for the most patient benefit.

Although teledermatology utilization in the United States traditionally has lagged behind other countries,1,2 the COVID-19 pandemic upended this trend by creating the need for a massive teledermatology experiment. Recently reported survey results from a large representative sample of US dermatologists (5000 participants) on perceptions of teledermatology during COVID-19 indicated that only 14.1% of participants used teledermatology prior to the COVID-19 pandemic vs 54.1% of dermatologists in Europe.2,3 Since the pandemic started, 97% of US dermatologists reported teledermatology use,3 demonstrating a huge shift in utilization. This trend is notable, as teledermatology has been shown to increase access to dermatology in underserved areas, reduce patient travel times, improve patient triage, and even reduce carbon footprints.1,4 Thus, to sustain the momentum, insights from the recent teledermatology experience during the pandemic should inform future development.

Notably, the COVID-19 pandemic led to a rapid shift in focus from store-and-forward teledermatology to live video–based models.1,2 Logistically, live video visits are challenging, require more time and resources, and often are diagnostically limited, with concerns regarding technology, connectivity, reimbursement, and appropriate use.3 Prior to COVID-19, formal Health Insurance Portability and Accountability Act–compliant teledermatology platforms often were costly to establish and maintain, largely relegating use to academic centers and Veterans Affairs hospitals. Thus, many fewer private practice dermatologists had used teledermatology compared to academic dermatologists in the United States (11.4% vs 27.6%).3 Government regulations—a key barrier to the adoption of teledermatology in private practice before COVID-19—were greatly relaxed during the pandemic. The Centers for Medicare and Medicaid Services removed restrictions on where patients could be seen, improved reimbursement for video visits, and allowed the use of platforms that are not Health Insurance Portability and Accountability Act compliant. Many states also relaxed medical licensing rules.

Overall, the general outlook on telehealth seems positive. Reimbursement has been found to be a primary factor in dermatologists’ willingness to use teledermatology.3 Thus, sustainable use of teledermatology likely will depend on continued reimbursement parity for live video as well as store-and-forward consultations, which have several advantages but currently are de-incentivized by low reimbursement. The survey also found that 70% of respondents felt that teledermatology use will continue after COVID-19, while 58% intended to continue use—nearly 5-fold more than before the pandemic.3 We suspect the discrepancy between participants’ predictions regarding future use of teledermatology and their personal intent to use it highlights perceived barriers and limitations of the long-term success of teledermatology. Aside from reimbursement, connectivity and functionality were common concerns, emphasizing the need for innovative technological solutions.3 Moving forward, we anticipate that dermatologists will need to establish consistent workflows to establish consistent triage for the most appropriate visit—in-person visits vs teledermatology, which may include augmented, intelligence-enhanced solutions. Similar to prior clinician perspectives about which types of visits are conducive to teledermatology,2 most survey participants believed virtual visits were effective for acne, routine follow-ups, medication monitoring, and some inflammatory conditions.3

Importantly, we must be mindful of patients who may be left behind by the digital divide, such as those with lack of access to a smartphone or the internet, language barriers, or limited telehealth experience.5 Systems should be designed to provide these patients with technologic and health literacy aid or alternate modalities to access care. For example, structured methods could be introduced to provide training and instructions on how to access phone applications, computer-based programs, and more. Likewise, for those with hearing or vision deficits, it will be important to improve sound amplification and accessibility for headphones or hearing aid connectivity, as well as appropriate font size, button size, and application navigation. In remote areas, existing clinics may be used to help field specialty consultation teleconferences. Certainly, applications and platforms devised for teledermatology must be designed to serve diverse patient groups, with special consideration for the elderly, those who speak languages other than English, and those with disabilities that may make telehealth use more challenging.

Large-scale regulatory changes and reimbursement parity can have a substantial impact on future teledermatology use. Advocacy efforts continue to push for fair valuation of telemedicine, coverage of store-and-forward teledermatology codes, and coverage for all models of care. It is imperative for the dermatology community to continue discussions on implementation and methodology to best leverage this technology for the most patient benefit.

References
  1. Tensen E, van der Heijden JP, Jaspers MWM, et al. Two decades of teledermatology: current status and integration in national healthcare systems. Curr Dermatol Rep. 2016;5:96-104.
  2. Moscarella E, Pasquali P, Cinotti E, et al. A survey on teledermatology use and doctors’ perception in times of COVID-19 [published online August 17, 2020]. J Eur Acad Dermatol Venereol. 2020;34:E772-E773.
  3. Kennedy J, Arey S, Hopkins Z, et al. Dermatologist perceptions of teledermatology implementation and future use after COVID-19: demographics, barriers, and insights. JAMA Dermatol. 2021;157:595-597.
  4. Bonsall A. Unleashing carbon emissions savings with regular teledermatology clinics. Clin Exp Dermatol. 2021;46:574-575.
  5. Bakhtiar M, Elbuluk N, Lipoff JB. The digital divide: how COVID-19’s telemedicine expansion could exacerbate disparities. J Am Acad Dermatol. 2020;83:E345-E346.
References
  1. Tensen E, van der Heijden JP, Jaspers MWM, et al. Two decades of teledermatology: current status and integration in national healthcare systems. Curr Dermatol Rep. 2016;5:96-104.
  2. Moscarella E, Pasquali P, Cinotti E, et al. A survey on teledermatology use and doctors’ perception in times of COVID-19 [published online August 17, 2020]. J Eur Acad Dermatol Venereol. 2020;34:E772-E773.
  3. Kennedy J, Arey S, Hopkins Z, et al. Dermatologist perceptions of teledermatology implementation and future use after COVID-19: demographics, barriers, and insights. JAMA Dermatol. 2021;157:595-597.
  4. Bonsall A. Unleashing carbon emissions savings with regular teledermatology clinics. Clin Exp Dermatol. 2021;46:574-575.
  5. Bakhtiar M, Elbuluk N, Lipoff JB. The digital divide: how COVID-19’s telemedicine expansion could exacerbate disparities. J Am Acad Dermatol. 2020;83:E345-E346.
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Views and Beliefs of Vitiligo Patients in Online Discussion Forums: A Qualitative Study

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Views and Beliefs of Vitiligo Patients in Online Discussion Forums: A Qualitative Study

Vitiligo is a chronic dermatologic condition that negatively affects quality of life (QOL), with substantial burden on the psychosocial well-being of patients.1 There is no cure, and current treatment modalities are aimed at controlling the chronic relapsing condition.1-3 Despite topical and cosmetic treatments for stabilization and repigmentation, vitiligo remains unpredictable.3

All genders, races, ethnicities, and socioeconomic classes are equally affected.4 The underlying etiology of vitiligo remains unknown to a great extent and is more poorly understood by the general public compared with other skin diseases (eg, acne).5 Patients with vitiligo experience social withdrawal, decreased sense of self-esteem, anxiety, depression, and suicidal ideation.5,6 Stigmatization has the greatest impact on QOL, with strong correlations between avoidance behaviors and lesion concealment.6-8 Although the condition is especially disfiguring for darker skin types, lighter skin types also are substantially affected, with similar overall self-reported stress.6,7

Individuals with chronic illnesses such as vitiligo turn to online communities for health information and social support, commiserating with others who have the same condition.9,10 Online forums are platforms for asynchronous peer-to-peer exchange of disease-related information for better management of long-term disease.11 Moreover, of all available internet resources, online forum posts are the most commonly accessed source of information (91%) for patients following visits with their doctors.12

Qualitative research involving chronic skin conditions and the information exchanged in online forums has been conducted for patients with acne, psoriasis, and atopic dermatitis, but not for patients with vitiligo.13-16 Although online questionnaires have been administered to patients with vitiligo, the content within online forums is not well characterized.2,17

The purpose of this qualitative study was to evaluate the online content exchanged by individuals with vitiligo to better understand the general attitudes and help-seeking behaviors in online forums.

Methods

Study Design—This qualitative study sought to investigate health beliefs and messages about vitiligo posted by users in US-based online discussion forums. An interpretive research paradigm was utilized so that all content collected in online forums were the views expressed by individuals.18-20 An integrated approach was used in the development of the coding manual, with pre-established major themes and subthemes as a guiding framework.16,21,22 We adhered to an inductive grounded method by means of de novo line-by-line coding, such that we had flexibility for new subthemes to emerge throughout the duration of the entire coding process.23

Individual posts and subsequent replies embedded within public online forums were used as the collected data source. Google was utilized as the primary search engine to identify forums pertaining to vitiligo, as 80% of US adults with chronic disease report that their inquiries for health information start with Google, Bing, or Yahoo.24 The institutional review board at the Wake Forest School of Medicine (Winston-Salem, North Carolina) granted approval of the study (IRB00063073). Online forums were considered “property” of the public domain and were accessible to all, eliminating the need for written informed consent.24-26

 

 

Search Criteria—We conducted our forum search in February 2020 with a systematic approach using predetermined phrases—online forum vitiligo support, vitiligo online message board, and vitiligo forums—which yielded more than 358,171 total results (eTable 1). Threads were identified in chronological order (from newest to oldest) based on how they appeared during each internet search, and all Google results for the respective search phrases were reviewed. Dates of selected threads ranged from 2005 to 2020. Only sites with US domains were included. Posts that either included views and understandings of vitiligo or belonged to a thread that contained a vitiligo discussion were deemed relevant for inclusion. Forums were excluded if registration or means of payment was required to view posts, if there were fewer than 2 user replies to a thread, if threads contained patient photographs, or if no posts had been made in the last 2 years (rendering the thread inactive). No social media platforms, such as Facebook, or formal online platforms, such as MyVitiligoTeam, were included in the search. A no-fee-for-access was chosen for this study, as the majority of those with a chronic condition who encounter a required paywall find the information elsewhere.25

Search Strategy for Online Forums Related to Vitiligo

Data Analysis—A total of 39 online forums were deemed relevant to the topic of vitiligo; 9 of them met inclusion criteria (eTable 2). The messages within the forums were copied verbatim into a password-encrypted text document, and usernames in the threads were de-identified, ensuring user confidentiality.

Online Forums Meeting Inclusion Criteria

An inductive thematic analysis was utilized to explore the views and beliefs of online forum users discussing vitiligo. One author (M.B.G.) read the extracted message threads, developed an initial codebook, and established a finalized version with the agreement of another author (A.M.B.)(eTable 3). The forums were independently coded (M.B.G. and A.M.B.) in a line-by-line manner according to the codebook. Discrepancies were documented and resolved. Data saturation was adequately achieved, such that no new themes emerged during the iterative coding process. NVivo was used for qualitative analysis.

Code Structure: Understanding the Beliefs and Content of Information Exchanged by Individuals in Online Forum Discussions on Vitiligo

Results

Nine forums met inclusion criteria, comprising 105 pages of text. There were 61 total discussion threads, with 382 anonymous contributing users. Most users initiated a thread by posting either a question, an advice statement, or a request for help. The psychosocial impact of the disease permeated multiple domains,including personal relationships and daily life. Several threads discussed treatment, including effective camouflage and makeup, as well as peer validation of physician-prescribed treatments, along with threads dedicated to “cures” or homeopathy regimens. In several instances, commercial product endorsement, testimonials, and marketing links were reposted by the same user multiple times.

Inductive thematic analysis highlighted diverse themes and subthemes related to the beliefs and perspectives of users with vitiligo or with relatives or friends with vitiligo: psychosocial impact, disease management and camouflage/concealment, alternative medicine/homeopathy/cures, interactions with the public and health care providers, and skin tone and race. Quotes from individuals were included to demonstrate themes and subthemes.

Psychosocial Impact: QOL, Sources of Support, and Coping—There was a broad range of comments on how patients cope with and view their vitiligo. Some individuals felt vitiligo made them special, and others were at peace with and accepted their condition. In contrast, others reported the disease had devastated them and interfered with relationships. Individuals shared their stories of grief and hardships through childhood and adulthood and their concerns, especially on affected visible areas or the potential for disease progression. Users were vocal about how vitiligo affected their daily routines and lives, sharing how they felt uncomfortable outside the home, no longer engaged in swimming or exposing their legs, and preferred to stay inside instead. Some users adopted a “tough love” approach to coping, sharing how they have learned to either embrace their vitiligo or “live with it.” Some examples include:

“My best advice is go with the flow, vitiligo is not the worst thing that can happen.”

 

 

“I hate my life with vitiligo yet really I feel so selfish that there is much worse suffering in the world than a few white patches.”

Other advice was very practical:

“I hope it isn’t vanity that is tearing you apart because that is only skin deep. Make a fashion statement with hats.”

Some users acknowledged and adopted the mantra that vitiligo is not a somatic condition or “physical ailment,” while others emphasized its pervasive psychological burden:

“I still deal with this psychologically . . . You must keep a positive attitude and frame of mind . . . Vitiligo will not kill you, but you do need to stay strong and keep your head up emotionally.”

“I am just really thankful that I have a disease that will not kill me or that has [not] affected me physically at all. I consider myself lucky.”

Disease Management: Treatment, Vitiligo Course, Advice-Seeking, Camouflage—The range of information discussed for treatment was highly variable. There were many accounts in which users advised others to seek professional help, namely that of a dermatologist, for a formal assessment. Many expressed frustrations with treatments and their ineffectiveness, to which the majority of users said to consult with a professional and to remain patient and hopeful/optimistic:

“The best thing to do would be to take an appointment with a dermatologist and have the discoloration checked out. That’s the only way to know whether it is vitiligo or not.”

“My way of dealing with it is to gain control by camouflage.”

“The calming effect of being in control of my vitiligo, whether with concealers, self-tan or anything else, has stopped my feelings of despair.”

 

 

Beliefs on Alternative Medicine: Homeopathy and Alternative Regimens—Although some threads started with a post asking for the best treatments, others initiated a discussion by posting “best herbal treatments for cure” or “how to cure my vitiligo,” emphasizing the beliefs and wishes for a cure for vitiligo. Alternative therapies that users endorsed included apple cider vinegar, toothpaste, vitamins, and Ayurvedic treatment, among others. Dietary plans were popular, with users claiming success with dietary alterations in stopping and preventing lesion progression. For example, individuals felt that avoidance of sugar, meat, dairy, and citrus fruits or drinks and consumption of only filtered water were crucial to preventing further lesion spread and resulted in their “cure”:

“Don’t eat chocolate, wine (made of grapes), coffee, or tea if you don’t want to have vitiligo or let it get worse. Take Vitamin B, biotin, and nuts for Vitamin E.”

Other dangerous messages pitted treatments by health professionals against beliefs in homeopathy:

“I feel that vitiligo treatment is all in your diet and vitamins. All that medicine and UV lights is a no-no . . .w ith every medicine there is a side effect. The doctors could be healing your vitiligo and severely damaging you inside and out, and you won’t know until years later.”

There was a minor presence of users advising against homeopathy and the associated misinformation and inaccurate claims on curing vitiligo, though this group was small in comparison to the number of users posting outlandish claims on cure:

“There is no cure . . . It’s where your immune system attacks your skin cells causing loss of pigmentation. The skin that has lost the pigmentation can’t be reversed.”

Interactions With the Public and Health Care Providers—Those with vitiligo encounter unique situations in public and in their daily lives. Many of the accounts shared anecdotal stories on how patients have handled the stigma and discrimination faced:

“I have had to face discrimination at school, public places, college, functions, and every new person I have met has asked me this: ‘how did this happen?’”

Those with vitiligo even stated how they wished others would deal with their condition out in public, hoping that others would directly ask what the lesions were instead of the more hurtful staring. There were many stories in which users said others feel vitiligo was contagious or “dirty” and stressed that the condition is not infectious:

“I refer to myself as ‘camo-man’ and reassure people I come into contact with that it is not contagious.”

“Once I was eating at a restaurant . . . and a little girl said to her mom, ‘Look, Mom, that lady doesn’t wash her arms, look how dirty they are.’ That just broke my heart.”

 

 

Skin Tone and Implications—The belief that vitiligo lesions are less dramatic or less anxiety provoking for individuals with lighter skin was noted by users themselves and by health care providers in certain cases. Skin tone and its impact on QOL was confusing and contentious. Some users with fair skin stated their vitiligo was “less of an annoyance” or “less obvious” compared with individuals with darker complexions. Conversely, other accounts of self-reported White users vehemently stressed the anxieties felt by depigmented lesions, despite being “already white at baseline.”

“Was told by my dermatologist (upon diagnosis) that ‘You’re lucky you’re not African American—it shows up on them much worse. You’re so fair, it doesn’t really matter.’

“You didn’t say what race you are. I could imagine it has a bigger impact if you are anything other than White.”

Comment

Patients Looking for Cures—The general attitude within the forums was uplifting and encouraging, with users detailing how they respond to others in public and sharing their personal perspectives. We found a mix of information regarding disease management and treatment of vitiligo. Overall, there was uncertainty about treatments, with individuals expressing concern that their treatments were ineffective or had failed or that better alternatives would be more suitable for their condition. We found many anecdotal endorsements of homeopathic remedies for vitiligo, with users boasting that their disease had not only been cured but had never returned. Some users completely denounced these statements, while other threads seemed to revolve completely around “cure” discussions with no dissenting voices. The number of discussions related to homeopathy was concerning. Furthermore, there often were no moderators within threads to remove cure-related content, whether commercially endorsed or anecdotal. It is plausible that supplements and vitamins recommended by some physicians may be incorrectly interpreted as a “cure” in online discussions. Our findings are consistent with prior reports that forums are a platform to express dissatisfaction with treatment and the need for additional treatment options.15,22

Concern Expressed by Health Care Providers—Prior qualitative research has described how patients with chronic dermatologic conditions believe that health care providers minimize patients’ psychological distress.27,28 We found several accounts in which an individual had explicitly stated their provider had “belittled” the extent and impact of vitiligo when comparing skin phototypes. This suggests either that physicians underestimate the impact of vitiligo on their patients or that physicians are not expressing enough empathic concern about the impact the condition has on those affected.

Cosmetic Aspects of Vitiligo—Few clinical trials have investigated QOL and cosmetic acceptability of treatments as outcome measures.29 We found several instances in which users with vitiligo had reported being dismissed as having a “cosmetic disease,” consistent with other work demonstrating the negative impact on such dismissals.22 Moreover, concealment and camouflage techniques frequently were discussed, demonstrating the relevance of cosmetic management as an important research topic.

Trustworthy Sources of Health Information—Patients still view physicians as trustworthy and a key source of health care information and advice.30-32 Patients with vitiligo who have been directed to reliable information sources often express gratitude22 and want health professionals to remain an important source in their health information-seeking.31 Given the range in information discussed online, it may be valuable to invite patients to share what information they have encountered online.

 

 

Our study highlights the conflicting health information and advice shared by users in online forums, complicating an already psychologically burdensome condition. Guiding patients to credible, moderated sites and resources that are accurate, understandable, and easy to access may help dispel the conflicting messages and stories discussed in the online community.

Study Strengths and Limitations—Limitations included reporting bias and reliance on self-reported information on the diagnosis and extent of individuals’ vitiligo. Excluding social media websites and platforms from the data collection is a limitation to comprehensively assessing the topic of internet users with vitiligo. Many social media platforms direct patients and their family members to support groups and therefore may have excluded these particular individuals. Social media platforms were excluded from our research owing to the prerequisite of creating user accounts or registering as an online member. Our inclusion criteria were specific to forums that did not require registering or creating an account and were therefore freely accessible to all internet viewers. There is an inherent lack of context present in online forums, preventing data collection on individuals’ demographics and socioeconomic backgrounds. However, anonymity may have allowed individuals to express their thoughts more freely.

An integrated approach, along with our sampling method of online forums not requiring registration, allows for greater transferability and understanding of the health needs of the general public with vitiligo.

Conclusion

Individuals with vitiligo continue to seek peer psychosocial support for the physical and emotional management of their disease. Counseling those with vitiligo about cosmetic concealment options, homeopathy, and treatment scams remains paramount. Directing patients to evidence-based resources, along with providing structured sources of support, may help to improve the psychosocial burden and QOL experienced by patients with vitiligo. Connecting patients with local and national support groups moderated by physicians, such as the Global Vitiligo Foundation (https://globalvitiligofoundation.org/), may provide benefit to patients with vitiligo.

References
  1. Yaghoobi R, Omidian M, Bagherani N. Vitiligo: a review of the published work. J Dermatol. 2011;38:419-431.
  2. Ezzedine K, Sheth V, Rodrigues M, et al. Vitiligo is not a cosmetic disease. J Am Acad Dermatol. 2015;73:883-885.
  3. Faria AR, Tarlé RG, Dellatorre G, et al. Vitiligo—part 2—classification, histopathology and treatment. An Bras Dermatol. 2014;89:784-790.
  4. Alkhateeb A, Fain PR, Thody A, et al. Epidemiology of vitiligo and associated autoimmune diseases in Caucasian probands and their families. Pigment Cell Res. 2003;16:208-214.
  5. Nguyen CM, Beroukhim K, Danesh MJ, et al. The psychosocial impact of acne, vitiligo, and psoriasis: a review. Clin Cosmet Investig Dermatol. 2016;9:383-392.
  6. Ezzedine K, Eleftheriadou V, Whitton M, et al. Vitiligo. Lancet. 2015;386:74-84.
  7. Grimes PE, Billips M. Childhood vitiligo: clinical spectrum and therapeutic approaches. In: Hann SK, Nordlund JJ, eds. Vitiligo: A Monograph on the Basic and Clinical Science. Blackwell Science; 2000.
  8. Sawant NS, Vanjari NA, Khopkar U. Gender differences in depression, coping, stigma, and quality of life in patients of vitiligo. Dermatol Res Pract. 2019;2019:6879412.
  9. Liu Y, Kornfield R, Shaw BR, et al. When support is needed: social support solicitation and provision in an online alcohol use disorder forum. Digit Health. 2017;3:2055207617704274.
  10. Health 2.0. The Economist. 2007;384:14.
  11. Fox S. Peer-to-peer health care. Pew Research Center. February 28, 2011. Accessed December 14, 2021. https://www.pewinternet.org/wp-content/uploads/sites/9/media/Files/Reports/2011/Pew_P2PHealthcare_2011.pdf
  12. Li N, Orrange S, Kravitz RL, et al. Reasons for and predictors of patients’ online health information seeking following a medical appointment. Fam Pract. 2014;31:550-556.
  13. Idriss SZ, Kvedar JC, Watson AJ. The role of online support communities: benefits of expanded social networks to patients with psoriasis. Arch Dermatol. 2009;145:46-51.
  14. Teasdale EJ, Muller I, Santer M. Carers’ views of topical corticosteroid use in childhood eczema: a qualitative study of online discussion forums. Br J Dermatol 2017;176:1500-1507.
  15. Santer M, Chandler D, Lown M, et al. Views of oral antibiotics and advice seeking about acne: a qualitative study of online discussion forums. Br J Dermatol. 2017;177:751-757.
  16. Santer M, Burgess H, Yardley L, et al. Experiences of carers managing childhood eczema and their views on its treatment: a qualitative study. Br J Gen Pract. 2012;62:e261-e267.
  17. Talsania N, Lamb B, Bewley A. Vitiligo is more than skin deep: a survey of members of the Vitiligo Society. Clin Exp Dermatol. 2010;35:736-739.
  18. Guba EG, Lincoln YS. Competing paradigms in qualitative research. In: Denzin NK, Lincoln YS, eds. Handbook of Qualitative Research. Sage Publications, Inc; 1994:105-117.
  19. Lincoln YS. Emerging criteria for quality in qualitative and interpretive research. Qualitative Inquiry. 2016;1:275-289.
  20. O’Brien BC, Harris IB, Beckman TJ, et al. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med. 2014;89:1245-1251.
  21. Teasdale EJ, Muller I, Santer M. Carers’ views of topical corticosteroid use in childhood eczema: a qualitative study of online discussion forums. Br J Dermatol. 2017;176:1500-1507.
  22. Teasdale E, Muller I, Sani AA, et al. Views and experiences of seeking information and help for vitiligo: a qualitative study of written accounts. BMJ Open. 2018;8:e018652.
  23. Bradley EH, Curry LA, Devers KJ. Qualitative data analysis for health services research: developing taxonomy, themes, and theory. Health Serv Res. 2007;42:1758-1772.
  24. Hewson C, Buchanan T, Brown I, et al. Ethics Guidelines for Internet-mediated Research. The British Psychological Society; 2017.
  25. Coulson NS. Sharing, supporting and sobriety: a qualitative analysis of messages posted to alcohol-related online discussion forums in the United Kingdom. J Subst Use. 2014;19:176-180.
  26. Attard A, Coulson NS. A thematic analysis of patient communication in Parkinson’s disease online support group discussion forums. Comput Hum Behav. 2012;28:500-506.
  27. Nelson PA, Chew-Graham CA, Griffiths CE, et al. Recognition of need in health care consultations: a qualitative study of people with psoriasis. Br J Dermatol. 2013;168:354-361.
  28. Gore C, Johnson RJ, Caress AL, et al. The information needs and preferred roles in treatment decision-making of parents caring for infants with atopic dermatitis: a qualitative study. Allergy. 2005;60:938-943.
  29. Eleftheriadou V, Thomas KS, Whitton ME, et al. Which outcomes should we measure in vitiligo? Results of a systematic review and a survey among patients and clinicians on outcomes in vitiligo trials. Br J Dermatol. 2012;167:804-814.
  30. Tan SS, Goonawardene N. Internet health information seeking and the patient-physician relationship: a systematic review. J Med Internet Res. 2017;19:e9.
  31. Sillence E, Briggs P, Harris PR, et al. How do patients evaluate and make use of online health information? Soc Sci Med. 2007;64:1853-1862.
  32. Hay MC, Cadigan RJ, Khanna D, et al. Prepared patients: internet information seeking by new rheumatology patients. Arthritis Rheum. 2008;59:575-582.
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Author and Disclosure Information

From the Center for Dermatology Research, Department of Dermatology, Wake Forest School of Medicine, Winston-Salem, North Carolina. Dr. Feldman also is from the Wake Forest School of Medicine Department of Pathology and Department of Social Sciences & Health Policy, and the Department of Dermatology, University of Southern Denmark, Odense.

Drs. Gadarowski and Bashyam report no conflict of interest. Dr. McMichael has received consulting, research, royalties, and/or speaking support from Allergan; Almirall; Arcutis; Bioniz Therapeutics; Cassiopea; Concert Pharmaceuticals; Covance; Eli Lilly and Company; eResearchTechnology, Inc; Galderma; Incyte Corp; Informa Healthcare; Johnson & Johnson; KeraNetics Inc; Merck & Co; Pfizer; Procter & Gamble; Revian; Samumed; and UpToDate. Dr. Feldman has received consulting, research, and/or speaking support from the following companies: AbbVie; Advance Medical; Alvotech; Amgen; Caremark; Celgene; Eli Lilly and Company; Informa; Galderma; Gerson Lehrman Group; Guidepoint Global; Janssen Pharmaceuticals; Kikaku; LEO Pharma; Medical Quality Enhancement Corporation; Merck & Co; Mylan; Novartis; Ortho Dermatology; Pfizer; Regeneron Pharmaceuticals; Sanofi; Sienna; Sun Pharmaceutical Industries Ltd; Suncare Research Laboratories; Taro; UpToDate; Xenoport; and Xlibris. He is founder and majority owner of www.DrScore.com, and he is founder, stockholder, and Chief Technology Officer of Causa Research, a company dedicated to enhancing patients’ adherence to treatment.

The eTables are available in the Appendix online at www.mdedge.com/dermatology.

Correspondence: Mary Beth Gadarowski, MD, Department of Dermatology, Wake Forest School of Medicine, Medical Center Blvd, Winston-Salem, NC 27157-1071 ([email protected]).

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Author and Disclosure Information

From the Center for Dermatology Research, Department of Dermatology, Wake Forest School of Medicine, Winston-Salem, North Carolina. Dr. Feldman also is from the Wake Forest School of Medicine Department of Pathology and Department of Social Sciences & Health Policy, and the Department of Dermatology, University of Southern Denmark, Odense.

Drs. Gadarowski and Bashyam report no conflict of interest. Dr. McMichael has received consulting, research, royalties, and/or speaking support from Allergan; Almirall; Arcutis; Bioniz Therapeutics; Cassiopea; Concert Pharmaceuticals; Covance; Eli Lilly and Company; eResearchTechnology, Inc; Galderma; Incyte Corp; Informa Healthcare; Johnson & Johnson; KeraNetics Inc; Merck & Co; Pfizer; Procter & Gamble; Revian; Samumed; and UpToDate. Dr. Feldman has received consulting, research, and/or speaking support from the following companies: AbbVie; Advance Medical; Alvotech; Amgen; Caremark; Celgene; Eli Lilly and Company; Informa; Galderma; Gerson Lehrman Group; Guidepoint Global; Janssen Pharmaceuticals; Kikaku; LEO Pharma; Medical Quality Enhancement Corporation; Merck & Co; Mylan; Novartis; Ortho Dermatology; Pfizer; Regeneron Pharmaceuticals; Sanofi; Sienna; Sun Pharmaceutical Industries Ltd; Suncare Research Laboratories; Taro; UpToDate; Xenoport; and Xlibris. He is founder and majority owner of www.DrScore.com, and he is founder, stockholder, and Chief Technology Officer of Causa Research, a company dedicated to enhancing patients’ adherence to treatment.

The eTables are available in the Appendix online at www.mdedge.com/dermatology.

Correspondence: Mary Beth Gadarowski, MD, Department of Dermatology, Wake Forest School of Medicine, Medical Center Blvd, Winston-Salem, NC 27157-1071 ([email protected]).

Author and Disclosure Information

From the Center for Dermatology Research, Department of Dermatology, Wake Forest School of Medicine, Winston-Salem, North Carolina. Dr. Feldman also is from the Wake Forest School of Medicine Department of Pathology and Department of Social Sciences & Health Policy, and the Department of Dermatology, University of Southern Denmark, Odense.

Drs. Gadarowski and Bashyam report no conflict of interest. Dr. McMichael has received consulting, research, royalties, and/or speaking support from Allergan; Almirall; Arcutis; Bioniz Therapeutics; Cassiopea; Concert Pharmaceuticals; Covance; Eli Lilly and Company; eResearchTechnology, Inc; Galderma; Incyte Corp; Informa Healthcare; Johnson & Johnson; KeraNetics Inc; Merck & Co; Pfizer; Procter & Gamble; Revian; Samumed; and UpToDate. Dr. Feldman has received consulting, research, and/or speaking support from the following companies: AbbVie; Advance Medical; Alvotech; Amgen; Caremark; Celgene; Eli Lilly and Company; Informa; Galderma; Gerson Lehrman Group; Guidepoint Global; Janssen Pharmaceuticals; Kikaku; LEO Pharma; Medical Quality Enhancement Corporation; Merck & Co; Mylan; Novartis; Ortho Dermatology; Pfizer; Regeneron Pharmaceuticals; Sanofi; Sienna; Sun Pharmaceutical Industries Ltd; Suncare Research Laboratories; Taro; UpToDate; Xenoport; and Xlibris. He is founder and majority owner of www.DrScore.com, and he is founder, stockholder, and Chief Technology Officer of Causa Research, a company dedicated to enhancing patients’ adherence to treatment.

The eTables are available in the Appendix online at www.mdedge.com/dermatology.

Correspondence: Mary Beth Gadarowski, MD, Department of Dermatology, Wake Forest School of Medicine, Medical Center Blvd, Winston-Salem, NC 27157-1071 ([email protected]).

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Vitiligo is a chronic dermatologic condition that negatively affects quality of life (QOL), with substantial burden on the psychosocial well-being of patients.1 There is no cure, and current treatment modalities are aimed at controlling the chronic relapsing condition.1-3 Despite topical and cosmetic treatments for stabilization and repigmentation, vitiligo remains unpredictable.3

All genders, races, ethnicities, and socioeconomic classes are equally affected.4 The underlying etiology of vitiligo remains unknown to a great extent and is more poorly understood by the general public compared with other skin diseases (eg, acne).5 Patients with vitiligo experience social withdrawal, decreased sense of self-esteem, anxiety, depression, and suicidal ideation.5,6 Stigmatization has the greatest impact on QOL, with strong correlations between avoidance behaviors and lesion concealment.6-8 Although the condition is especially disfiguring for darker skin types, lighter skin types also are substantially affected, with similar overall self-reported stress.6,7

Individuals with chronic illnesses such as vitiligo turn to online communities for health information and social support, commiserating with others who have the same condition.9,10 Online forums are platforms for asynchronous peer-to-peer exchange of disease-related information for better management of long-term disease.11 Moreover, of all available internet resources, online forum posts are the most commonly accessed source of information (91%) for patients following visits with their doctors.12

Qualitative research involving chronic skin conditions and the information exchanged in online forums has been conducted for patients with acne, psoriasis, and atopic dermatitis, but not for patients with vitiligo.13-16 Although online questionnaires have been administered to patients with vitiligo, the content within online forums is not well characterized.2,17

The purpose of this qualitative study was to evaluate the online content exchanged by individuals with vitiligo to better understand the general attitudes and help-seeking behaviors in online forums.

Methods

Study Design—This qualitative study sought to investigate health beliefs and messages about vitiligo posted by users in US-based online discussion forums. An interpretive research paradigm was utilized so that all content collected in online forums were the views expressed by individuals.18-20 An integrated approach was used in the development of the coding manual, with pre-established major themes and subthemes as a guiding framework.16,21,22 We adhered to an inductive grounded method by means of de novo line-by-line coding, such that we had flexibility for new subthemes to emerge throughout the duration of the entire coding process.23

Individual posts and subsequent replies embedded within public online forums were used as the collected data source. Google was utilized as the primary search engine to identify forums pertaining to vitiligo, as 80% of US adults with chronic disease report that their inquiries for health information start with Google, Bing, or Yahoo.24 The institutional review board at the Wake Forest School of Medicine (Winston-Salem, North Carolina) granted approval of the study (IRB00063073). Online forums were considered “property” of the public domain and were accessible to all, eliminating the need for written informed consent.24-26

 

 

Search Criteria—We conducted our forum search in February 2020 with a systematic approach using predetermined phrases—online forum vitiligo support, vitiligo online message board, and vitiligo forums—which yielded more than 358,171 total results (eTable 1). Threads were identified in chronological order (from newest to oldest) based on how they appeared during each internet search, and all Google results for the respective search phrases were reviewed. Dates of selected threads ranged from 2005 to 2020. Only sites with US domains were included. Posts that either included views and understandings of vitiligo or belonged to a thread that contained a vitiligo discussion were deemed relevant for inclusion. Forums were excluded if registration or means of payment was required to view posts, if there were fewer than 2 user replies to a thread, if threads contained patient photographs, or if no posts had been made in the last 2 years (rendering the thread inactive). No social media platforms, such as Facebook, or formal online platforms, such as MyVitiligoTeam, were included in the search. A no-fee-for-access was chosen for this study, as the majority of those with a chronic condition who encounter a required paywall find the information elsewhere.25

Search Strategy for Online Forums Related to Vitiligo

Data Analysis—A total of 39 online forums were deemed relevant to the topic of vitiligo; 9 of them met inclusion criteria (eTable 2). The messages within the forums were copied verbatim into a password-encrypted text document, and usernames in the threads were de-identified, ensuring user confidentiality.

Online Forums Meeting Inclusion Criteria

An inductive thematic analysis was utilized to explore the views and beliefs of online forum users discussing vitiligo. One author (M.B.G.) read the extracted message threads, developed an initial codebook, and established a finalized version with the agreement of another author (A.M.B.)(eTable 3). The forums were independently coded (M.B.G. and A.M.B.) in a line-by-line manner according to the codebook. Discrepancies were documented and resolved. Data saturation was adequately achieved, such that no new themes emerged during the iterative coding process. NVivo was used for qualitative analysis.

Code Structure: Understanding the Beliefs and Content of Information Exchanged by Individuals in Online Forum Discussions on Vitiligo

Results

Nine forums met inclusion criteria, comprising 105 pages of text. There were 61 total discussion threads, with 382 anonymous contributing users. Most users initiated a thread by posting either a question, an advice statement, or a request for help. The psychosocial impact of the disease permeated multiple domains,including personal relationships and daily life. Several threads discussed treatment, including effective camouflage and makeup, as well as peer validation of physician-prescribed treatments, along with threads dedicated to “cures” or homeopathy regimens. In several instances, commercial product endorsement, testimonials, and marketing links were reposted by the same user multiple times.

Inductive thematic analysis highlighted diverse themes and subthemes related to the beliefs and perspectives of users with vitiligo or with relatives or friends with vitiligo: psychosocial impact, disease management and camouflage/concealment, alternative medicine/homeopathy/cures, interactions with the public and health care providers, and skin tone and race. Quotes from individuals were included to demonstrate themes and subthemes.

Psychosocial Impact: QOL, Sources of Support, and Coping—There was a broad range of comments on how patients cope with and view their vitiligo. Some individuals felt vitiligo made them special, and others were at peace with and accepted their condition. In contrast, others reported the disease had devastated them and interfered with relationships. Individuals shared their stories of grief and hardships through childhood and adulthood and their concerns, especially on affected visible areas or the potential for disease progression. Users were vocal about how vitiligo affected their daily routines and lives, sharing how they felt uncomfortable outside the home, no longer engaged in swimming or exposing their legs, and preferred to stay inside instead. Some users adopted a “tough love” approach to coping, sharing how they have learned to either embrace their vitiligo or “live with it.” Some examples include:

“My best advice is go with the flow, vitiligo is not the worst thing that can happen.”

 

 

“I hate my life with vitiligo yet really I feel so selfish that there is much worse suffering in the world than a few white patches.”

Other advice was very practical:

“I hope it isn’t vanity that is tearing you apart because that is only skin deep. Make a fashion statement with hats.”

Some users acknowledged and adopted the mantra that vitiligo is not a somatic condition or “physical ailment,” while others emphasized its pervasive psychological burden:

“I still deal with this psychologically . . . You must keep a positive attitude and frame of mind . . . Vitiligo will not kill you, but you do need to stay strong and keep your head up emotionally.”

“I am just really thankful that I have a disease that will not kill me or that has [not] affected me physically at all. I consider myself lucky.”

Disease Management: Treatment, Vitiligo Course, Advice-Seeking, Camouflage—The range of information discussed for treatment was highly variable. There were many accounts in which users advised others to seek professional help, namely that of a dermatologist, for a formal assessment. Many expressed frustrations with treatments and their ineffectiveness, to which the majority of users said to consult with a professional and to remain patient and hopeful/optimistic:

“The best thing to do would be to take an appointment with a dermatologist and have the discoloration checked out. That’s the only way to know whether it is vitiligo or not.”

“My way of dealing with it is to gain control by camouflage.”

“The calming effect of being in control of my vitiligo, whether with concealers, self-tan or anything else, has stopped my feelings of despair.”

 

 

Beliefs on Alternative Medicine: Homeopathy and Alternative Regimens—Although some threads started with a post asking for the best treatments, others initiated a discussion by posting “best herbal treatments for cure” or “how to cure my vitiligo,” emphasizing the beliefs and wishes for a cure for vitiligo. Alternative therapies that users endorsed included apple cider vinegar, toothpaste, vitamins, and Ayurvedic treatment, among others. Dietary plans were popular, with users claiming success with dietary alterations in stopping and preventing lesion progression. For example, individuals felt that avoidance of sugar, meat, dairy, and citrus fruits or drinks and consumption of only filtered water were crucial to preventing further lesion spread and resulted in their “cure”:

“Don’t eat chocolate, wine (made of grapes), coffee, or tea if you don’t want to have vitiligo or let it get worse. Take Vitamin B, biotin, and nuts for Vitamin E.”

Other dangerous messages pitted treatments by health professionals against beliefs in homeopathy:

“I feel that vitiligo treatment is all in your diet and vitamins. All that medicine and UV lights is a no-no . . .w ith every medicine there is a side effect. The doctors could be healing your vitiligo and severely damaging you inside and out, and you won’t know until years later.”

There was a minor presence of users advising against homeopathy and the associated misinformation and inaccurate claims on curing vitiligo, though this group was small in comparison to the number of users posting outlandish claims on cure:

“There is no cure . . . It’s where your immune system attacks your skin cells causing loss of pigmentation. The skin that has lost the pigmentation can’t be reversed.”

Interactions With the Public and Health Care Providers—Those with vitiligo encounter unique situations in public and in their daily lives. Many of the accounts shared anecdotal stories on how patients have handled the stigma and discrimination faced:

“I have had to face discrimination at school, public places, college, functions, and every new person I have met has asked me this: ‘how did this happen?’”

Those with vitiligo even stated how they wished others would deal with their condition out in public, hoping that others would directly ask what the lesions were instead of the more hurtful staring. There were many stories in which users said others feel vitiligo was contagious or “dirty” and stressed that the condition is not infectious:

“I refer to myself as ‘camo-man’ and reassure people I come into contact with that it is not contagious.”

“Once I was eating at a restaurant . . . and a little girl said to her mom, ‘Look, Mom, that lady doesn’t wash her arms, look how dirty they are.’ That just broke my heart.”

 

 

Skin Tone and Implications—The belief that vitiligo lesions are less dramatic or less anxiety provoking for individuals with lighter skin was noted by users themselves and by health care providers in certain cases. Skin tone and its impact on QOL was confusing and contentious. Some users with fair skin stated their vitiligo was “less of an annoyance” or “less obvious” compared with individuals with darker complexions. Conversely, other accounts of self-reported White users vehemently stressed the anxieties felt by depigmented lesions, despite being “already white at baseline.”

“Was told by my dermatologist (upon diagnosis) that ‘You’re lucky you’re not African American—it shows up on them much worse. You’re so fair, it doesn’t really matter.’

“You didn’t say what race you are. I could imagine it has a bigger impact if you are anything other than White.”

Comment

Patients Looking for Cures—The general attitude within the forums was uplifting and encouraging, with users detailing how they respond to others in public and sharing their personal perspectives. We found a mix of information regarding disease management and treatment of vitiligo. Overall, there was uncertainty about treatments, with individuals expressing concern that their treatments were ineffective or had failed or that better alternatives would be more suitable for their condition. We found many anecdotal endorsements of homeopathic remedies for vitiligo, with users boasting that their disease had not only been cured but had never returned. Some users completely denounced these statements, while other threads seemed to revolve completely around “cure” discussions with no dissenting voices. The number of discussions related to homeopathy was concerning. Furthermore, there often were no moderators within threads to remove cure-related content, whether commercially endorsed or anecdotal. It is plausible that supplements and vitamins recommended by some physicians may be incorrectly interpreted as a “cure” in online discussions. Our findings are consistent with prior reports that forums are a platform to express dissatisfaction with treatment and the need for additional treatment options.15,22

Concern Expressed by Health Care Providers—Prior qualitative research has described how patients with chronic dermatologic conditions believe that health care providers minimize patients’ psychological distress.27,28 We found several accounts in which an individual had explicitly stated their provider had “belittled” the extent and impact of vitiligo when comparing skin phototypes. This suggests either that physicians underestimate the impact of vitiligo on their patients or that physicians are not expressing enough empathic concern about the impact the condition has on those affected.

Cosmetic Aspects of Vitiligo—Few clinical trials have investigated QOL and cosmetic acceptability of treatments as outcome measures.29 We found several instances in which users with vitiligo had reported being dismissed as having a “cosmetic disease,” consistent with other work demonstrating the negative impact on such dismissals.22 Moreover, concealment and camouflage techniques frequently were discussed, demonstrating the relevance of cosmetic management as an important research topic.

Trustworthy Sources of Health Information—Patients still view physicians as trustworthy and a key source of health care information and advice.30-32 Patients with vitiligo who have been directed to reliable information sources often express gratitude22 and want health professionals to remain an important source in their health information-seeking.31 Given the range in information discussed online, it may be valuable to invite patients to share what information they have encountered online.

 

 

Our study highlights the conflicting health information and advice shared by users in online forums, complicating an already psychologically burdensome condition. Guiding patients to credible, moderated sites and resources that are accurate, understandable, and easy to access may help dispel the conflicting messages and stories discussed in the online community.

Study Strengths and Limitations—Limitations included reporting bias and reliance on self-reported information on the diagnosis and extent of individuals’ vitiligo. Excluding social media websites and platforms from the data collection is a limitation to comprehensively assessing the topic of internet users with vitiligo. Many social media platforms direct patients and their family members to support groups and therefore may have excluded these particular individuals. Social media platforms were excluded from our research owing to the prerequisite of creating user accounts or registering as an online member. Our inclusion criteria were specific to forums that did not require registering or creating an account and were therefore freely accessible to all internet viewers. There is an inherent lack of context present in online forums, preventing data collection on individuals’ demographics and socioeconomic backgrounds. However, anonymity may have allowed individuals to express their thoughts more freely.

An integrated approach, along with our sampling method of online forums not requiring registration, allows for greater transferability and understanding of the health needs of the general public with vitiligo.

Conclusion

Individuals with vitiligo continue to seek peer psychosocial support for the physical and emotional management of their disease. Counseling those with vitiligo about cosmetic concealment options, homeopathy, and treatment scams remains paramount. Directing patients to evidence-based resources, along with providing structured sources of support, may help to improve the psychosocial burden and QOL experienced by patients with vitiligo. Connecting patients with local and national support groups moderated by physicians, such as the Global Vitiligo Foundation (https://globalvitiligofoundation.org/), may provide benefit to patients with vitiligo.

Vitiligo is a chronic dermatologic condition that negatively affects quality of life (QOL), with substantial burden on the psychosocial well-being of patients.1 There is no cure, and current treatment modalities are aimed at controlling the chronic relapsing condition.1-3 Despite topical and cosmetic treatments for stabilization and repigmentation, vitiligo remains unpredictable.3

All genders, races, ethnicities, and socioeconomic classes are equally affected.4 The underlying etiology of vitiligo remains unknown to a great extent and is more poorly understood by the general public compared with other skin diseases (eg, acne).5 Patients with vitiligo experience social withdrawal, decreased sense of self-esteem, anxiety, depression, and suicidal ideation.5,6 Stigmatization has the greatest impact on QOL, with strong correlations between avoidance behaviors and lesion concealment.6-8 Although the condition is especially disfiguring for darker skin types, lighter skin types also are substantially affected, with similar overall self-reported stress.6,7

Individuals with chronic illnesses such as vitiligo turn to online communities for health information and social support, commiserating with others who have the same condition.9,10 Online forums are platforms for asynchronous peer-to-peer exchange of disease-related information for better management of long-term disease.11 Moreover, of all available internet resources, online forum posts are the most commonly accessed source of information (91%) for patients following visits with their doctors.12

Qualitative research involving chronic skin conditions and the information exchanged in online forums has been conducted for patients with acne, psoriasis, and atopic dermatitis, but not for patients with vitiligo.13-16 Although online questionnaires have been administered to patients with vitiligo, the content within online forums is not well characterized.2,17

The purpose of this qualitative study was to evaluate the online content exchanged by individuals with vitiligo to better understand the general attitudes and help-seeking behaviors in online forums.

Methods

Study Design—This qualitative study sought to investigate health beliefs and messages about vitiligo posted by users in US-based online discussion forums. An interpretive research paradigm was utilized so that all content collected in online forums were the views expressed by individuals.18-20 An integrated approach was used in the development of the coding manual, with pre-established major themes and subthemes as a guiding framework.16,21,22 We adhered to an inductive grounded method by means of de novo line-by-line coding, such that we had flexibility for new subthemes to emerge throughout the duration of the entire coding process.23

Individual posts and subsequent replies embedded within public online forums were used as the collected data source. Google was utilized as the primary search engine to identify forums pertaining to vitiligo, as 80% of US adults with chronic disease report that their inquiries for health information start with Google, Bing, or Yahoo.24 The institutional review board at the Wake Forest School of Medicine (Winston-Salem, North Carolina) granted approval of the study (IRB00063073). Online forums were considered “property” of the public domain and were accessible to all, eliminating the need for written informed consent.24-26

 

 

Search Criteria—We conducted our forum search in February 2020 with a systematic approach using predetermined phrases—online forum vitiligo support, vitiligo online message board, and vitiligo forums—which yielded more than 358,171 total results (eTable 1). Threads were identified in chronological order (from newest to oldest) based on how they appeared during each internet search, and all Google results for the respective search phrases were reviewed. Dates of selected threads ranged from 2005 to 2020. Only sites with US domains were included. Posts that either included views and understandings of vitiligo or belonged to a thread that contained a vitiligo discussion were deemed relevant for inclusion. Forums were excluded if registration or means of payment was required to view posts, if there were fewer than 2 user replies to a thread, if threads contained patient photographs, or if no posts had been made in the last 2 years (rendering the thread inactive). No social media platforms, such as Facebook, or formal online platforms, such as MyVitiligoTeam, were included in the search. A no-fee-for-access was chosen for this study, as the majority of those with a chronic condition who encounter a required paywall find the information elsewhere.25

Search Strategy for Online Forums Related to Vitiligo

Data Analysis—A total of 39 online forums were deemed relevant to the topic of vitiligo; 9 of them met inclusion criteria (eTable 2). The messages within the forums were copied verbatim into a password-encrypted text document, and usernames in the threads were de-identified, ensuring user confidentiality.

Online Forums Meeting Inclusion Criteria

An inductive thematic analysis was utilized to explore the views and beliefs of online forum users discussing vitiligo. One author (M.B.G.) read the extracted message threads, developed an initial codebook, and established a finalized version with the agreement of another author (A.M.B.)(eTable 3). The forums were independently coded (M.B.G. and A.M.B.) in a line-by-line manner according to the codebook. Discrepancies were documented and resolved. Data saturation was adequately achieved, such that no new themes emerged during the iterative coding process. NVivo was used for qualitative analysis.

Code Structure: Understanding the Beliefs and Content of Information Exchanged by Individuals in Online Forum Discussions on Vitiligo

Results

Nine forums met inclusion criteria, comprising 105 pages of text. There were 61 total discussion threads, with 382 anonymous contributing users. Most users initiated a thread by posting either a question, an advice statement, or a request for help. The psychosocial impact of the disease permeated multiple domains,including personal relationships and daily life. Several threads discussed treatment, including effective camouflage and makeup, as well as peer validation of physician-prescribed treatments, along with threads dedicated to “cures” or homeopathy regimens. In several instances, commercial product endorsement, testimonials, and marketing links were reposted by the same user multiple times.

Inductive thematic analysis highlighted diverse themes and subthemes related to the beliefs and perspectives of users with vitiligo or with relatives or friends with vitiligo: psychosocial impact, disease management and camouflage/concealment, alternative medicine/homeopathy/cures, interactions with the public and health care providers, and skin tone and race. Quotes from individuals were included to demonstrate themes and subthemes.

Psychosocial Impact: QOL, Sources of Support, and Coping—There was a broad range of comments on how patients cope with and view their vitiligo. Some individuals felt vitiligo made them special, and others were at peace with and accepted their condition. In contrast, others reported the disease had devastated them and interfered with relationships. Individuals shared their stories of grief and hardships through childhood and adulthood and their concerns, especially on affected visible areas or the potential for disease progression. Users were vocal about how vitiligo affected their daily routines and lives, sharing how they felt uncomfortable outside the home, no longer engaged in swimming or exposing their legs, and preferred to stay inside instead. Some users adopted a “tough love” approach to coping, sharing how they have learned to either embrace their vitiligo or “live with it.” Some examples include:

“My best advice is go with the flow, vitiligo is not the worst thing that can happen.”

 

 

“I hate my life with vitiligo yet really I feel so selfish that there is much worse suffering in the world than a few white patches.”

Other advice was very practical:

“I hope it isn’t vanity that is tearing you apart because that is only skin deep. Make a fashion statement with hats.”

Some users acknowledged and adopted the mantra that vitiligo is not a somatic condition or “physical ailment,” while others emphasized its pervasive psychological burden:

“I still deal with this psychologically . . . You must keep a positive attitude and frame of mind . . . Vitiligo will not kill you, but you do need to stay strong and keep your head up emotionally.”

“I am just really thankful that I have a disease that will not kill me or that has [not] affected me physically at all. I consider myself lucky.”

Disease Management: Treatment, Vitiligo Course, Advice-Seeking, Camouflage—The range of information discussed for treatment was highly variable. There were many accounts in which users advised others to seek professional help, namely that of a dermatologist, for a formal assessment. Many expressed frustrations with treatments and their ineffectiveness, to which the majority of users said to consult with a professional and to remain patient and hopeful/optimistic:

“The best thing to do would be to take an appointment with a dermatologist and have the discoloration checked out. That’s the only way to know whether it is vitiligo or not.”

“My way of dealing with it is to gain control by camouflage.”

“The calming effect of being in control of my vitiligo, whether with concealers, self-tan or anything else, has stopped my feelings of despair.”

 

 

Beliefs on Alternative Medicine: Homeopathy and Alternative Regimens—Although some threads started with a post asking for the best treatments, others initiated a discussion by posting “best herbal treatments for cure” or “how to cure my vitiligo,” emphasizing the beliefs and wishes for a cure for vitiligo. Alternative therapies that users endorsed included apple cider vinegar, toothpaste, vitamins, and Ayurvedic treatment, among others. Dietary plans were popular, with users claiming success with dietary alterations in stopping and preventing lesion progression. For example, individuals felt that avoidance of sugar, meat, dairy, and citrus fruits or drinks and consumption of only filtered water were crucial to preventing further lesion spread and resulted in their “cure”:

“Don’t eat chocolate, wine (made of grapes), coffee, or tea if you don’t want to have vitiligo or let it get worse. Take Vitamin B, biotin, and nuts for Vitamin E.”

Other dangerous messages pitted treatments by health professionals against beliefs in homeopathy:

“I feel that vitiligo treatment is all in your diet and vitamins. All that medicine and UV lights is a no-no . . .w ith every medicine there is a side effect. The doctors could be healing your vitiligo and severely damaging you inside and out, and you won’t know until years later.”

There was a minor presence of users advising against homeopathy and the associated misinformation and inaccurate claims on curing vitiligo, though this group was small in comparison to the number of users posting outlandish claims on cure:

“There is no cure . . . It’s where your immune system attacks your skin cells causing loss of pigmentation. The skin that has lost the pigmentation can’t be reversed.”

Interactions With the Public and Health Care Providers—Those with vitiligo encounter unique situations in public and in their daily lives. Many of the accounts shared anecdotal stories on how patients have handled the stigma and discrimination faced:

“I have had to face discrimination at school, public places, college, functions, and every new person I have met has asked me this: ‘how did this happen?’”

Those with vitiligo even stated how they wished others would deal with their condition out in public, hoping that others would directly ask what the lesions were instead of the more hurtful staring. There were many stories in which users said others feel vitiligo was contagious or “dirty” and stressed that the condition is not infectious:

“I refer to myself as ‘camo-man’ and reassure people I come into contact with that it is not contagious.”

“Once I was eating at a restaurant . . . and a little girl said to her mom, ‘Look, Mom, that lady doesn’t wash her arms, look how dirty they are.’ That just broke my heart.”

 

 

Skin Tone and Implications—The belief that vitiligo lesions are less dramatic or less anxiety provoking for individuals with lighter skin was noted by users themselves and by health care providers in certain cases. Skin tone and its impact on QOL was confusing and contentious. Some users with fair skin stated their vitiligo was “less of an annoyance” or “less obvious” compared with individuals with darker complexions. Conversely, other accounts of self-reported White users vehemently stressed the anxieties felt by depigmented lesions, despite being “already white at baseline.”

“Was told by my dermatologist (upon diagnosis) that ‘You’re lucky you’re not African American—it shows up on them much worse. You’re so fair, it doesn’t really matter.’

“You didn’t say what race you are. I could imagine it has a bigger impact if you are anything other than White.”

Comment

Patients Looking for Cures—The general attitude within the forums was uplifting and encouraging, with users detailing how they respond to others in public and sharing their personal perspectives. We found a mix of information regarding disease management and treatment of vitiligo. Overall, there was uncertainty about treatments, with individuals expressing concern that their treatments were ineffective or had failed or that better alternatives would be more suitable for their condition. We found many anecdotal endorsements of homeopathic remedies for vitiligo, with users boasting that their disease had not only been cured but had never returned. Some users completely denounced these statements, while other threads seemed to revolve completely around “cure” discussions with no dissenting voices. The number of discussions related to homeopathy was concerning. Furthermore, there often were no moderators within threads to remove cure-related content, whether commercially endorsed or anecdotal. It is plausible that supplements and vitamins recommended by some physicians may be incorrectly interpreted as a “cure” in online discussions. Our findings are consistent with prior reports that forums are a platform to express dissatisfaction with treatment and the need for additional treatment options.15,22

Concern Expressed by Health Care Providers—Prior qualitative research has described how patients with chronic dermatologic conditions believe that health care providers minimize patients’ psychological distress.27,28 We found several accounts in which an individual had explicitly stated their provider had “belittled” the extent and impact of vitiligo when comparing skin phototypes. This suggests either that physicians underestimate the impact of vitiligo on their patients or that physicians are not expressing enough empathic concern about the impact the condition has on those affected.

Cosmetic Aspects of Vitiligo—Few clinical trials have investigated QOL and cosmetic acceptability of treatments as outcome measures.29 We found several instances in which users with vitiligo had reported being dismissed as having a “cosmetic disease,” consistent with other work demonstrating the negative impact on such dismissals.22 Moreover, concealment and camouflage techniques frequently were discussed, demonstrating the relevance of cosmetic management as an important research topic.

Trustworthy Sources of Health Information—Patients still view physicians as trustworthy and a key source of health care information and advice.30-32 Patients with vitiligo who have been directed to reliable information sources often express gratitude22 and want health professionals to remain an important source in their health information-seeking.31 Given the range in information discussed online, it may be valuable to invite patients to share what information they have encountered online.

 

 

Our study highlights the conflicting health information and advice shared by users in online forums, complicating an already psychologically burdensome condition. Guiding patients to credible, moderated sites and resources that are accurate, understandable, and easy to access may help dispel the conflicting messages and stories discussed in the online community.

Study Strengths and Limitations—Limitations included reporting bias and reliance on self-reported information on the diagnosis and extent of individuals’ vitiligo. Excluding social media websites and platforms from the data collection is a limitation to comprehensively assessing the topic of internet users with vitiligo. Many social media platforms direct patients and their family members to support groups and therefore may have excluded these particular individuals. Social media platforms were excluded from our research owing to the prerequisite of creating user accounts or registering as an online member. Our inclusion criteria were specific to forums that did not require registering or creating an account and were therefore freely accessible to all internet viewers. There is an inherent lack of context present in online forums, preventing data collection on individuals’ demographics and socioeconomic backgrounds. However, anonymity may have allowed individuals to express their thoughts more freely.

An integrated approach, along with our sampling method of online forums not requiring registration, allows for greater transferability and understanding of the health needs of the general public with vitiligo.

Conclusion

Individuals with vitiligo continue to seek peer psychosocial support for the physical and emotional management of their disease. Counseling those with vitiligo about cosmetic concealment options, homeopathy, and treatment scams remains paramount. Directing patients to evidence-based resources, along with providing structured sources of support, may help to improve the psychosocial burden and QOL experienced by patients with vitiligo. Connecting patients with local and national support groups moderated by physicians, such as the Global Vitiligo Foundation (https://globalvitiligofoundation.org/), may provide benefit to patients with vitiligo.

References
  1. Yaghoobi R, Omidian M, Bagherani N. Vitiligo: a review of the published work. J Dermatol. 2011;38:419-431.
  2. Ezzedine K, Sheth V, Rodrigues M, et al. Vitiligo is not a cosmetic disease. J Am Acad Dermatol. 2015;73:883-885.
  3. Faria AR, Tarlé RG, Dellatorre G, et al. Vitiligo—part 2—classification, histopathology and treatment. An Bras Dermatol. 2014;89:784-790.
  4. Alkhateeb A, Fain PR, Thody A, et al. Epidemiology of vitiligo and associated autoimmune diseases in Caucasian probands and their families. Pigment Cell Res. 2003;16:208-214.
  5. Nguyen CM, Beroukhim K, Danesh MJ, et al. The psychosocial impact of acne, vitiligo, and psoriasis: a review. Clin Cosmet Investig Dermatol. 2016;9:383-392.
  6. Ezzedine K, Eleftheriadou V, Whitton M, et al. Vitiligo. Lancet. 2015;386:74-84.
  7. Grimes PE, Billips M. Childhood vitiligo: clinical spectrum and therapeutic approaches. In: Hann SK, Nordlund JJ, eds. Vitiligo: A Monograph on the Basic and Clinical Science. Blackwell Science; 2000.
  8. Sawant NS, Vanjari NA, Khopkar U. Gender differences in depression, coping, stigma, and quality of life in patients of vitiligo. Dermatol Res Pract. 2019;2019:6879412.
  9. Liu Y, Kornfield R, Shaw BR, et al. When support is needed: social support solicitation and provision in an online alcohol use disorder forum. Digit Health. 2017;3:2055207617704274.
  10. Health 2.0. The Economist. 2007;384:14.
  11. Fox S. Peer-to-peer health care. Pew Research Center. February 28, 2011. Accessed December 14, 2021. https://www.pewinternet.org/wp-content/uploads/sites/9/media/Files/Reports/2011/Pew_P2PHealthcare_2011.pdf
  12. Li N, Orrange S, Kravitz RL, et al. Reasons for and predictors of patients’ online health information seeking following a medical appointment. Fam Pract. 2014;31:550-556.
  13. Idriss SZ, Kvedar JC, Watson AJ. The role of online support communities: benefits of expanded social networks to patients with psoriasis. Arch Dermatol. 2009;145:46-51.
  14. Teasdale EJ, Muller I, Santer M. Carers’ views of topical corticosteroid use in childhood eczema: a qualitative study of online discussion forums. Br J Dermatol 2017;176:1500-1507.
  15. Santer M, Chandler D, Lown M, et al. Views of oral antibiotics and advice seeking about acne: a qualitative study of online discussion forums. Br J Dermatol. 2017;177:751-757.
  16. Santer M, Burgess H, Yardley L, et al. Experiences of carers managing childhood eczema and their views on its treatment: a qualitative study. Br J Gen Pract. 2012;62:e261-e267.
  17. Talsania N, Lamb B, Bewley A. Vitiligo is more than skin deep: a survey of members of the Vitiligo Society. Clin Exp Dermatol. 2010;35:736-739.
  18. Guba EG, Lincoln YS. Competing paradigms in qualitative research. In: Denzin NK, Lincoln YS, eds. Handbook of Qualitative Research. Sage Publications, Inc; 1994:105-117.
  19. Lincoln YS. Emerging criteria for quality in qualitative and interpretive research. Qualitative Inquiry. 2016;1:275-289.
  20. O’Brien BC, Harris IB, Beckman TJ, et al. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med. 2014;89:1245-1251.
  21. Teasdale EJ, Muller I, Santer M. Carers’ views of topical corticosteroid use in childhood eczema: a qualitative study of online discussion forums. Br J Dermatol. 2017;176:1500-1507.
  22. Teasdale E, Muller I, Sani AA, et al. Views and experiences of seeking information and help for vitiligo: a qualitative study of written accounts. BMJ Open. 2018;8:e018652.
  23. Bradley EH, Curry LA, Devers KJ. Qualitative data analysis for health services research: developing taxonomy, themes, and theory. Health Serv Res. 2007;42:1758-1772.
  24. Hewson C, Buchanan T, Brown I, et al. Ethics Guidelines for Internet-mediated Research. The British Psychological Society; 2017.
  25. Coulson NS. Sharing, supporting and sobriety: a qualitative analysis of messages posted to alcohol-related online discussion forums in the United Kingdom. J Subst Use. 2014;19:176-180.
  26. Attard A, Coulson NS. A thematic analysis of patient communication in Parkinson’s disease online support group discussion forums. Comput Hum Behav. 2012;28:500-506.
  27. Nelson PA, Chew-Graham CA, Griffiths CE, et al. Recognition of need in health care consultations: a qualitative study of people with psoriasis. Br J Dermatol. 2013;168:354-361.
  28. Gore C, Johnson RJ, Caress AL, et al. The information needs and preferred roles in treatment decision-making of parents caring for infants with atopic dermatitis: a qualitative study. Allergy. 2005;60:938-943.
  29. Eleftheriadou V, Thomas KS, Whitton ME, et al. Which outcomes should we measure in vitiligo? Results of a systematic review and a survey among patients and clinicians on outcomes in vitiligo trials. Br J Dermatol. 2012;167:804-814.
  30. Tan SS, Goonawardene N. Internet health information seeking and the patient-physician relationship: a systematic review. J Med Internet Res. 2017;19:e9.
  31. Sillence E, Briggs P, Harris PR, et al. How do patients evaluate and make use of online health information? Soc Sci Med. 2007;64:1853-1862.
  32. Hay MC, Cadigan RJ, Khanna D, et al. Prepared patients: internet information seeking by new rheumatology patients. Arthritis Rheum. 2008;59:575-582.
References
  1. Yaghoobi R, Omidian M, Bagherani N. Vitiligo: a review of the published work. J Dermatol. 2011;38:419-431.
  2. Ezzedine K, Sheth V, Rodrigues M, et al. Vitiligo is not a cosmetic disease. J Am Acad Dermatol. 2015;73:883-885.
  3. Faria AR, Tarlé RG, Dellatorre G, et al. Vitiligo—part 2—classification, histopathology and treatment. An Bras Dermatol. 2014;89:784-790.
  4. Alkhateeb A, Fain PR, Thody A, et al. Epidemiology of vitiligo and associated autoimmune diseases in Caucasian probands and their families. Pigment Cell Res. 2003;16:208-214.
  5. Nguyen CM, Beroukhim K, Danesh MJ, et al. The psychosocial impact of acne, vitiligo, and psoriasis: a review. Clin Cosmet Investig Dermatol. 2016;9:383-392.
  6. Ezzedine K, Eleftheriadou V, Whitton M, et al. Vitiligo. Lancet. 2015;386:74-84.
  7. Grimes PE, Billips M. Childhood vitiligo: clinical spectrum and therapeutic approaches. In: Hann SK, Nordlund JJ, eds. Vitiligo: A Monograph on the Basic and Clinical Science. Blackwell Science; 2000.
  8. Sawant NS, Vanjari NA, Khopkar U. Gender differences in depression, coping, stigma, and quality of life in patients of vitiligo. Dermatol Res Pract. 2019;2019:6879412.
  9. Liu Y, Kornfield R, Shaw BR, et al. When support is needed: social support solicitation and provision in an online alcohol use disorder forum. Digit Health. 2017;3:2055207617704274.
  10. Health 2.0. The Economist. 2007;384:14.
  11. Fox S. Peer-to-peer health care. Pew Research Center. February 28, 2011. Accessed December 14, 2021. https://www.pewinternet.org/wp-content/uploads/sites/9/media/Files/Reports/2011/Pew_P2PHealthcare_2011.pdf
  12. Li N, Orrange S, Kravitz RL, et al. Reasons for and predictors of patients’ online health information seeking following a medical appointment. Fam Pract. 2014;31:550-556.
  13. Idriss SZ, Kvedar JC, Watson AJ. The role of online support communities: benefits of expanded social networks to patients with psoriasis. Arch Dermatol. 2009;145:46-51.
  14. Teasdale EJ, Muller I, Santer M. Carers’ views of topical corticosteroid use in childhood eczema: a qualitative study of online discussion forums. Br J Dermatol 2017;176:1500-1507.
  15. Santer M, Chandler D, Lown M, et al. Views of oral antibiotics and advice seeking about acne: a qualitative study of online discussion forums. Br J Dermatol. 2017;177:751-757.
  16. Santer M, Burgess H, Yardley L, et al. Experiences of carers managing childhood eczema and their views on its treatment: a qualitative study. Br J Gen Pract. 2012;62:e261-e267.
  17. Talsania N, Lamb B, Bewley A. Vitiligo is more than skin deep: a survey of members of the Vitiligo Society. Clin Exp Dermatol. 2010;35:736-739.
  18. Guba EG, Lincoln YS. Competing paradigms in qualitative research. In: Denzin NK, Lincoln YS, eds. Handbook of Qualitative Research. Sage Publications, Inc; 1994:105-117.
  19. Lincoln YS. Emerging criteria for quality in qualitative and interpretive research. Qualitative Inquiry. 2016;1:275-289.
  20. O’Brien BC, Harris IB, Beckman TJ, et al. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med. 2014;89:1245-1251.
  21. Teasdale EJ, Muller I, Santer M. Carers’ views of topical corticosteroid use in childhood eczema: a qualitative study of online discussion forums. Br J Dermatol. 2017;176:1500-1507.
  22. Teasdale E, Muller I, Sani AA, et al. Views and experiences of seeking information and help for vitiligo: a qualitative study of written accounts. BMJ Open. 2018;8:e018652.
  23. Bradley EH, Curry LA, Devers KJ. Qualitative data analysis for health services research: developing taxonomy, themes, and theory. Health Serv Res. 2007;42:1758-1772.
  24. Hewson C, Buchanan T, Brown I, et al. Ethics Guidelines for Internet-mediated Research. The British Psychological Society; 2017.
  25. Coulson NS. Sharing, supporting and sobriety: a qualitative analysis of messages posted to alcohol-related online discussion forums in the United Kingdom. J Subst Use. 2014;19:176-180.
  26. Attard A, Coulson NS. A thematic analysis of patient communication in Parkinson’s disease online support group discussion forums. Comput Hum Behav. 2012;28:500-506.
  27. Nelson PA, Chew-Graham CA, Griffiths CE, et al. Recognition of need in health care consultations: a qualitative study of people with psoriasis. Br J Dermatol. 2013;168:354-361.
  28. Gore C, Johnson RJ, Caress AL, et al. The information needs and preferred roles in treatment decision-making of parents caring for infants with atopic dermatitis: a qualitative study. Allergy. 2005;60:938-943.
  29. Eleftheriadou V, Thomas KS, Whitton ME, et al. Which outcomes should we measure in vitiligo? Results of a systematic review and a survey among patients and clinicians on outcomes in vitiligo trials. Br J Dermatol. 2012;167:804-814.
  30. Tan SS, Goonawardene N. Internet health information seeking and the patient-physician relationship: a systematic review. J Med Internet Res. 2017;19:e9.
  31. Sillence E, Briggs P, Harris PR, et al. How do patients evaluate and make use of online health information? Soc Sci Med. 2007;64:1853-1862.
  32. Hay MC, Cadigan RJ, Khanna D, et al. Prepared patients: internet information seeking by new rheumatology patients. Arthritis Rheum. 2008;59:575-582.
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Practice Points

  • Online forums provide invaluable insight on vitiligo disease management, psychosocial impact, and burden on quality of life. Patient care can be improved by inquiring where patients seek information and whether online forums are utilized.
  • Commonly discussed topics in online forums were cosmetic concealment of vitiligo lesions and homeopathy or “cure” discussions. Health care providers can engage in honest conversations about evidence-based medical treatments for vitiligo. The interest in cosmetic management highlights a relevant research area in this field.
  • Health care providers can better serve patients with vitiligo by providing online resources that are reputable and can help guide patients to credible internet sources such as the Global Vitiligo Foundation.
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Telemedicine Alopecia Assessment: Highlighting Patients With Skin of Color

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Telemedicine Alopecia Assessment: Highlighting Patients With Skin of Color

Practice Gap

In accordance with World Health Organization guidelines on social distancing to limit transmission of SARS-CoV-2, dermatologists have relied on teledermatology (TD) to develop novel adaptations of traditional workflows, optimize patient care, and limit in-person appointments during the COVID-19 pandemic. Pandemic-induced physical and emotional stress were anticipated to increase the incidence of dermatologic diseases with psychologic triggers. 

The connection between hair loss and emotional stress is well documented for telogen effluvium and alopecia areata.1,2 As anticipated, dermatology visits increased during the COVID-19 pandemic for the diagnosis of alopecia1-4; a survey performed during the pandemic found that alopecia was one of the most common diagnoses dermatologists made through telehealth platforms.5

This article provides a practical guide for dermatology practitioners to efficiently and accurately assess alopecia by TD in all patients, with added considerations for skin of color patients.

Diagnostic Tools

The intersection of TD, as an effective mechanism for the diagnosis and treatment of dermatologic disorders, and the increase in alopecia observed during the COVID-19 pandemic prompted us to develop a workflow for conducting virtual scalp examinations. Seven dermatologists (A.M., A.A., O.A., N.E., V.C., C.M.B., S.C.T.) who are experts in hair disorders contributed to developing workflows to optimize the assessment of alopecia through a virtual scalp examination, with an emphasis on patients of color. These experts completed a 7-question survey (Table) detailing their approach to the virtual scalp examination. One author (B.N.W.) served as an independent reviewer and collated responses into the following workflows.

Survey Questions on Telemedicine Scalp Examination

Telemedicine Previsit Workflow

Components of the previsit workflow include:

• Instruct patients to provide all laboratory values and biopsy reports before the appointment.

• Test for a stable Wi-Fi connection using a speed test (available at https://www.speedtest.net/). A speed of 10 megabits/second or more is required for high-quality video via TD.6

Vertex scalp
FIGURE 1. Patient photograph of the vertex scalp prior to a teledermatology appointment. Instruct the patient to put their chin down. Taking the photograph with the hair parted from the nape of the neck to the mid frontal point of the hairline is particularly valuable for surveying hair density and diagnosing certain scalp disorders.

• Provide a handout illustrating the required photographs of the anterior hairline; the mid scalp, including vertex, bilateral parietal, and occipital scalp; and posterior hairline. Photographs should be uploaded 2 hours before the visit. Figures 1 and 2 are examples of photographs that should be requested.

Right and left temporal areas
FIGURE 2. Patient full-view photograph of the face, including eyebrows and eyelashes, prior to a teledermatology appointment. Other helpful images include the right and left temporal areas and the occipital area, if relevant (not shown).

 

 

• Request images with 2 or 3 different angles of the area of the scalp with the greatest involvement to help appreciate primary and secondary characteristics.

• Encourage patients to present with clean, recently shampooed, dried, and detangled natural hair, unless they have an itchy or flaky scalp.

• For concerns of scalp, hairline, eyebrow, or facial flaking and scaling, instruct the patient to avoid applying a moisturizer before the visit.

• Instruct the patient to remove false eyelashes, eyelash extensions, eyebrow pencil, hair camouflage, hair accessories, braids, extensions, weaves, twists, and other hairstyles so that the hair can be maneuvered to expose the scalp surface.

• Instruct the patient to have a comb, pic, or brush, or more than one of these implements, available during the visit.

Telemedicine Visit Workflow

Components of the visit workflow include:

• If a stable Wi-Fi connection cannot be established, switch to an audio-only visit to collect a pertinent history. Advise the patient that in-person follow-up must be scheduled.

• Confirm that (1) the patient is in a private setting where the scalp can be viewed and (2) lighting is positioned in front of the patient.

 

 

• Ensure that the patient’s hairline, full face, eyebrows, and eyelashes and, upon request, the vertex and posterior scalp, are completely visible.

• Initiate the virtual scalp examination by instructing the patient how to perform a hair pull test. Then, examine the pattern and distribution of hair loss alongside supplemental photographs.

• Instruct the patient to apply pressure with the fingertips throughout the scalp to help localize tenderness, which, in combination with the pattern of hair loss observed, might inform the diagnosis.

• Instruct the patient to scan the scalp with the fingertips for “bumps” to locate papules, pustules, and keloidal scars.

Diagnostic Pearls

Distribution of Alopecia—The experts noted that the pattern, distribution, and location of hair loss determined from the telemedicine alopecia assessment provided important clues to distinguish the type of alopecia.

Diagnostic clues for diffuse or generalized alopecia include:

• Either of these findings might be indicative of telogen effluvium or acquired trichorrhexis nodosa. Results of the hair pull test can help distinguish between these diagnoses.

• Recent stressful life events along with the presence of telogen hairs extracted during a hair pull test support the diagnosis of telogen effluvium.

 

 

• A history of external stress on the hair—thermal, traction, or chemical—along with broken hair shafts following the hair pull test support the diagnosis of acquired trichorrhexis nodosa.

Diagnostic clues for focal or patchy alopecia include:

• Alopecia areata generally presents as focal hair loss in an annular distribution; pruritus, erythema, and scale are absent.

• Seborrheic dermatitis can present as pruritic erythematous patches with scale distributed on the scalp and, in some cases, in the eyebrows, nasolabial folds, or paranasal skin.7 Some skin of color patients present with petaloid seborrheic dermatitis—pink or hypopigmented polycyclic coalescing rings with minimal scale.7,8

• Discoid lupus erythematosus, similar to seborrheic dermatitis, might present as pruritic, scaly, hypopigmented patches. However, in the experience of the experts, a more common presentation is tender erythematous patches of hair loss with central hypopigmentation and surrounding hyperpigmentation.

Diagnostic clues for vertex and mid scalp alopecia include:

• Androgenetic alopecia typically presents as a reduction of terminal hair density in the vertex and mid scalp regions (with widening through the midline part) and fine hair along the anterior hairline.9 Signs of concomitant hyperandrogenism, including facial hirsutism, acne, and obesity, might be observed.10

• Central centrifugal cicatricial alopecia typically affects the vertex and mid scalp with a shiny scalp appearance and follicular dropout.

Diagnostic clues for frontotemporal alopecia include:

• Frontal fibrosing alopecia (FFA) often presents with spared single terminal hairs (lonely hair sign).

 

 

• Traction alopecia commonly presents with the fringe hair sign.

Scalp Symptoms—The experts noted that the presence of symptoms (eg, pain, tenderness, pruritus) in conjunction with the pattern of hair loss might support the diagnosis of an inflammatory scarring alopecia.

When do symptoms raise suspicion of central centrifugal cicatricial alopecia?

• Suspected in the setting of vertex alopecia associated with tenderness, pain, or itching.

When do symptoms raise suspicion of FFA?

• Suspected when patients experience frontotemporal tenderness, pain, or burning associated with alopecia.

• The skin hue of the affected area might be lighter in color than, and contrast with, the darker hue of the photoaged upper forehead.11

 

 

• The lonely hair sign can aid in diagnosing FFA and distinguish it from the fringe sign of traction alopecia.

• Concurrent madarosis, flesh-colored papules on the cheeks, or lichen planus pigmentosus identified by visual inspection of the face confirms the diagnosis.9,12 Madarosis of the eyebrow was frequently cited by the experts as an associated symptom of FFA.

When do symptoms raise suspicion of lichen planopilaris?

• Suspected in the presence of pruritus, burning, tenderness, or pain associated with perifollicular erythema and scale in the setting of vertex and parietal alopecia.13

• Anagen hair release is observed during the hair pull test.11,14• The experts cited flesh-colored papules and lichen planus pigmentosus as frequently associated symptoms of lichen planopilaris.

Practice Implications

There are limitations to a virtual scalp examination—the inability to perform a scalp biopsy or administer certain treatments—but the consensus of the expert panel is that an initial alopecia assessment can be completed successfully utilizing TD. Although TD is not a replacement for an in-person dermatology visit, this technology has allowed for the diagnosis, treatment, and continuing care of many common dermatologic conditions without the patient needing to travel to the office.5

With the increased frequency of hair loss concerns documented over the last year and more patients seeking TD, it is imperative that dermatologists feel confident performing a virtual hair and scalp examination on all patients.1,3,4

References
  1. Kutlu Ö, Aktas¸ H, I·mren IG, et al. Short-term stress-related increasing cases of alopecia areata during the COVID-19 pandemic. J Dermatolog Treat. 2020;1. doi:10.1080/09546634.2020.1782820
  2. Cline A, Kazemi A, Moy J, et al. A surge in the incidence of telogen effluvium in minority predominant communities heavily impacted by COVID-19. J Am Acad Dermatol. 2021;84:773-775. doi:10.1016/j.jaad.2020.11.032
  3. Kutlu Ö, Metin A. Relative changes in the pattern of diseases presenting in dermatology outpatient clinic in the era of the COVID-19 pandemic. Dermatol Ther. 2020;33:e14096. doi:10.1111/dth.14096
  4. Tanacan E, Aksoy Sarac G, Emeksiz MAC, et al. Changing trends in dermatology practice during COVID-19 pandemic: a single tertiary center experience. Dermatol Ther. 2020;33:e14136. doi:10.1111/dth.14136
  5. Sharma A, Jindal V, Singla P, et al. Will teledermatology be the silver lining during and after COVID-19? Dermatol Ther. 2020;33:e13643. doi:10.1111/dth.13643
  6. Iscrupe L. How to receive virtual medical treatment while under quarantine. Allconnect website. Published March 26, 2020. Accessed December 9, 2021. https://www.allconnect.com/blog/online-doctor-visit-faq
  7. Elgash M, Dlova N, Ogunleye T, et al. Seborrheic dermatitis in skin of color: clinical considerations. J Drugs Dermatol. 2019;18:24-27.
  8. McLaurin CI. Annular facial dermatoses in blacks. Cutis. 1983;32:369-370, 384.
  9. Suchonwanit P, Hector CE, Bin Saif GA, McMichael AJ. Factors affecting the severity of central centrifugal cicatricial alopecia. Int J Dermatol. 2016;55:e338-343. doi:10.1111/ijd.13061
  10. Gabros S, Masood S. Central centrifugal cicatricial alopecia. StatPearls [Internet]. StatPearls Publishing; 2021. Updated July 20, 2021. Accessed December 9, 2021. https://www.ncbi.nlm.nih.gov/books/NBK559187/
  11. Ross EK, Tan E, Shapiro J. Update on primary cicatricial alopecias. J Am Acad Dermatol. 2005;53:1-37. doi:10.1016/j.jaad.2004.06.015
  12. Cobos G, Kim RH, Meehan S, et al. Lichen planus pigmentosus and lichen planopilaris. Dermatol Online J. 2016;22:13030/qt7hp8n6dn.
  13. Lyakhovitsky A, Amichai B, Sizopoulou C, et al. A case series of 46 patients with lichen planopilaris: demographics, clinical evaluation, and treatment experience. J Dermatolog Treat. 2015;26:275-279. doi:10.3109/09546634.2014.933165
  14. Tan E, Martinka M, Ball N, et al. Primary cicatricial alopecias: clinicopathology of 112 cases. J Am Acad Dermatol. 2004;50:25-32. doi:10.1016/j.jaad.2003.04.001
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Author and Disclosure Information

Ms. Wilson is from Rutgers New Jersey Medical School, Newark, New Jersey. Dr. McMichael is from the Department of Dermatology, Wake Forest School of Medicine, Winston-Salem, North Carolina. Dr. Alexis is from the Department of Dermatology, Weill Cornell Medicine, New York, New York. Dr. Agbai is from the Department of Dermatology, UC Davis School of Medicine, Sacramento, California. Dr. Elbuluk is from the Department of Dermatology, University of Southern California, Los Angeles. Dr. Callender is from private practice, Glenn Dale, Maryland. Dr. Burgess is from Howard University College of Medicine, Washington, DC, and private practice, Glenn Dale. Dr. Taylor is from the Perelman School of Medicine, University of Pennsylvania, Philadelphia.

The authors report no conflict of interest.

Correspondence: Britney N. Wilson, MBS, Rutgers New Jersey Medical School, 185 South Orange Ave, Newark, NJ 07103 ([email protected]).

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Author and Disclosure Information

Ms. Wilson is from Rutgers New Jersey Medical School, Newark, New Jersey. Dr. McMichael is from the Department of Dermatology, Wake Forest School of Medicine, Winston-Salem, North Carolina. Dr. Alexis is from the Department of Dermatology, Weill Cornell Medicine, New York, New York. Dr. Agbai is from the Department of Dermatology, UC Davis School of Medicine, Sacramento, California. Dr. Elbuluk is from the Department of Dermatology, University of Southern California, Los Angeles. Dr. Callender is from private practice, Glenn Dale, Maryland. Dr. Burgess is from Howard University College of Medicine, Washington, DC, and private practice, Glenn Dale. Dr. Taylor is from the Perelman School of Medicine, University of Pennsylvania, Philadelphia.

The authors report no conflict of interest.

Correspondence: Britney N. Wilson, MBS, Rutgers New Jersey Medical School, 185 South Orange Ave, Newark, NJ 07103 ([email protected]).

Author and Disclosure Information

Ms. Wilson is from Rutgers New Jersey Medical School, Newark, New Jersey. Dr. McMichael is from the Department of Dermatology, Wake Forest School of Medicine, Winston-Salem, North Carolina. Dr. Alexis is from the Department of Dermatology, Weill Cornell Medicine, New York, New York. Dr. Agbai is from the Department of Dermatology, UC Davis School of Medicine, Sacramento, California. Dr. Elbuluk is from the Department of Dermatology, University of Southern California, Los Angeles. Dr. Callender is from private practice, Glenn Dale, Maryland. Dr. Burgess is from Howard University College of Medicine, Washington, DC, and private practice, Glenn Dale. Dr. Taylor is from the Perelman School of Medicine, University of Pennsylvania, Philadelphia.

The authors report no conflict of interest.

Correspondence: Britney N. Wilson, MBS, Rutgers New Jersey Medical School, 185 South Orange Ave, Newark, NJ 07103 ([email protected]).

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Practice Gap

In accordance with World Health Organization guidelines on social distancing to limit transmission of SARS-CoV-2, dermatologists have relied on teledermatology (TD) to develop novel adaptations of traditional workflows, optimize patient care, and limit in-person appointments during the COVID-19 pandemic. Pandemic-induced physical and emotional stress were anticipated to increase the incidence of dermatologic diseases with psychologic triggers. 

The connection between hair loss and emotional stress is well documented for telogen effluvium and alopecia areata.1,2 As anticipated, dermatology visits increased during the COVID-19 pandemic for the diagnosis of alopecia1-4; a survey performed during the pandemic found that alopecia was one of the most common diagnoses dermatologists made through telehealth platforms.5

This article provides a practical guide for dermatology practitioners to efficiently and accurately assess alopecia by TD in all patients, with added considerations for skin of color patients.

Diagnostic Tools

The intersection of TD, as an effective mechanism for the diagnosis and treatment of dermatologic disorders, and the increase in alopecia observed during the COVID-19 pandemic prompted us to develop a workflow for conducting virtual scalp examinations. Seven dermatologists (A.M., A.A., O.A., N.E., V.C., C.M.B., S.C.T.) who are experts in hair disorders contributed to developing workflows to optimize the assessment of alopecia through a virtual scalp examination, with an emphasis on patients of color. These experts completed a 7-question survey (Table) detailing their approach to the virtual scalp examination. One author (B.N.W.) served as an independent reviewer and collated responses into the following workflows.

Survey Questions on Telemedicine Scalp Examination

Telemedicine Previsit Workflow

Components of the previsit workflow include:

• Instruct patients to provide all laboratory values and biopsy reports before the appointment.

• Test for a stable Wi-Fi connection using a speed test (available at https://www.speedtest.net/). A speed of 10 megabits/second or more is required for high-quality video via TD.6

Vertex scalp
FIGURE 1. Patient photograph of the vertex scalp prior to a teledermatology appointment. Instruct the patient to put their chin down. Taking the photograph with the hair parted from the nape of the neck to the mid frontal point of the hairline is particularly valuable for surveying hair density and diagnosing certain scalp disorders.

• Provide a handout illustrating the required photographs of the anterior hairline; the mid scalp, including vertex, bilateral parietal, and occipital scalp; and posterior hairline. Photographs should be uploaded 2 hours before the visit. Figures 1 and 2 are examples of photographs that should be requested.

Right and left temporal areas
FIGURE 2. Patient full-view photograph of the face, including eyebrows and eyelashes, prior to a teledermatology appointment. Other helpful images include the right and left temporal areas and the occipital area, if relevant (not shown).

 

 

• Request images with 2 or 3 different angles of the area of the scalp with the greatest involvement to help appreciate primary and secondary characteristics.

• Encourage patients to present with clean, recently shampooed, dried, and detangled natural hair, unless they have an itchy or flaky scalp.

• For concerns of scalp, hairline, eyebrow, or facial flaking and scaling, instruct the patient to avoid applying a moisturizer before the visit.

• Instruct the patient to remove false eyelashes, eyelash extensions, eyebrow pencil, hair camouflage, hair accessories, braids, extensions, weaves, twists, and other hairstyles so that the hair can be maneuvered to expose the scalp surface.

• Instruct the patient to have a comb, pic, or brush, or more than one of these implements, available during the visit.

Telemedicine Visit Workflow

Components of the visit workflow include:

• If a stable Wi-Fi connection cannot be established, switch to an audio-only visit to collect a pertinent history. Advise the patient that in-person follow-up must be scheduled.

• Confirm that (1) the patient is in a private setting where the scalp can be viewed and (2) lighting is positioned in front of the patient.

 

 

• Ensure that the patient’s hairline, full face, eyebrows, and eyelashes and, upon request, the vertex and posterior scalp, are completely visible.

• Initiate the virtual scalp examination by instructing the patient how to perform a hair pull test. Then, examine the pattern and distribution of hair loss alongside supplemental photographs.

• Instruct the patient to apply pressure with the fingertips throughout the scalp to help localize tenderness, which, in combination with the pattern of hair loss observed, might inform the diagnosis.

• Instruct the patient to scan the scalp with the fingertips for “bumps” to locate papules, pustules, and keloidal scars.

Diagnostic Pearls

Distribution of Alopecia—The experts noted that the pattern, distribution, and location of hair loss determined from the telemedicine alopecia assessment provided important clues to distinguish the type of alopecia.

Diagnostic clues for diffuse or generalized alopecia include:

• Either of these findings might be indicative of telogen effluvium or acquired trichorrhexis nodosa. Results of the hair pull test can help distinguish between these diagnoses.

• Recent stressful life events along with the presence of telogen hairs extracted during a hair pull test support the diagnosis of telogen effluvium.

 

 

• A history of external stress on the hair—thermal, traction, or chemical—along with broken hair shafts following the hair pull test support the diagnosis of acquired trichorrhexis nodosa.

Diagnostic clues for focal or patchy alopecia include:

• Alopecia areata generally presents as focal hair loss in an annular distribution; pruritus, erythema, and scale are absent.

• Seborrheic dermatitis can present as pruritic erythematous patches with scale distributed on the scalp and, in some cases, in the eyebrows, nasolabial folds, or paranasal skin.7 Some skin of color patients present with petaloid seborrheic dermatitis—pink or hypopigmented polycyclic coalescing rings with minimal scale.7,8

• Discoid lupus erythematosus, similar to seborrheic dermatitis, might present as pruritic, scaly, hypopigmented patches. However, in the experience of the experts, a more common presentation is tender erythematous patches of hair loss with central hypopigmentation and surrounding hyperpigmentation.

Diagnostic clues for vertex and mid scalp alopecia include:

• Androgenetic alopecia typically presents as a reduction of terminal hair density in the vertex and mid scalp regions (with widening through the midline part) and fine hair along the anterior hairline.9 Signs of concomitant hyperandrogenism, including facial hirsutism, acne, and obesity, might be observed.10

• Central centrifugal cicatricial alopecia typically affects the vertex and mid scalp with a shiny scalp appearance and follicular dropout.

Diagnostic clues for frontotemporal alopecia include:

• Frontal fibrosing alopecia (FFA) often presents with spared single terminal hairs (lonely hair sign).

 

 

• Traction alopecia commonly presents with the fringe hair sign.

Scalp Symptoms—The experts noted that the presence of symptoms (eg, pain, tenderness, pruritus) in conjunction with the pattern of hair loss might support the diagnosis of an inflammatory scarring alopecia.

When do symptoms raise suspicion of central centrifugal cicatricial alopecia?

• Suspected in the setting of vertex alopecia associated with tenderness, pain, or itching.

When do symptoms raise suspicion of FFA?

• Suspected when patients experience frontotemporal tenderness, pain, or burning associated with alopecia.

• The skin hue of the affected area might be lighter in color than, and contrast with, the darker hue of the photoaged upper forehead.11

 

 

• The lonely hair sign can aid in diagnosing FFA and distinguish it from the fringe sign of traction alopecia.

• Concurrent madarosis, flesh-colored papules on the cheeks, or lichen planus pigmentosus identified by visual inspection of the face confirms the diagnosis.9,12 Madarosis of the eyebrow was frequently cited by the experts as an associated symptom of FFA.

When do symptoms raise suspicion of lichen planopilaris?

• Suspected in the presence of pruritus, burning, tenderness, or pain associated with perifollicular erythema and scale in the setting of vertex and parietal alopecia.13

• Anagen hair release is observed during the hair pull test.11,14• The experts cited flesh-colored papules and lichen planus pigmentosus as frequently associated symptoms of lichen planopilaris.

Practice Implications

There are limitations to a virtual scalp examination—the inability to perform a scalp biopsy or administer certain treatments—but the consensus of the expert panel is that an initial alopecia assessment can be completed successfully utilizing TD. Although TD is not a replacement for an in-person dermatology visit, this technology has allowed for the diagnosis, treatment, and continuing care of many common dermatologic conditions without the patient needing to travel to the office.5

With the increased frequency of hair loss concerns documented over the last year and more patients seeking TD, it is imperative that dermatologists feel confident performing a virtual hair and scalp examination on all patients.1,3,4

Practice Gap

In accordance with World Health Organization guidelines on social distancing to limit transmission of SARS-CoV-2, dermatologists have relied on teledermatology (TD) to develop novel adaptations of traditional workflows, optimize patient care, and limit in-person appointments during the COVID-19 pandemic. Pandemic-induced physical and emotional stress were anticipated to increase the incidence of dermatologic diseases with psychologic triggers. 

The connection between hair loss and emotional stress is well documented for telogen effluvium and alopecia areata.1,2 As anticipated, dermatology visits increased during the COVID-19 pandemic for the diagnosis of alopecia1-4; a survey performed during the pandemic found that alopecia was one of the most common diagnoses dermatologists made through telehealth platforms.5

This article provides a practical guide for dermatology practitioners to efficiently and accurately assess alopecia by TD in all patients, with added considerations for skin of color patients.

Diagnostic Tools

The intersection of TD, as an effective mechanism for the diagnosis and treatment of dermatologic disorders, and the increase in alopecia observed during the COVID-19 pandemic prompted us to develop a workflow for conducting virtual scalp examinations. Seven dermatologists (A.M., A.A., O.A., N.E., V.C., C.M.B., S.C.T.) who are experts in hair disorders contributed to developing workflows to optimize the assessment of alopecia through a virtual scalp examination, with an emphasis on patients of color. These experts completed a 7-question survey (Table) detailing their approach to the virtual scalp examination. One author (B.N.W.) served as an independent reviewer and collated responses into the following workflows.

Survey Questions on Telemedicine Scalp Examination

Telemedicine Previsit Workflow

Components of the previsit workflow include:

• Instruct patients to provide all laboratory values and biopsy reports before the appointment.

• Test for a stable Wi-Fi connection using a speed test (available at https://www.speedtest.net/). A speed of 10 megabits/second or more is required for high-quality video via TD.6

Vertex scalp
FIGURE 1. Patient photograph of the vertex scalp prior to a teledermatology appointment. Instruct the patient to put their chin down. Taking the photograph with the hair parted from the nape of the neck to the mid frontal point of the hairline is particularly valuable for surveying hair density and diagnosing certain scalp disorders.

• Provide a handout illustrating the required photographs of the anterior hairline; the mid scalp, including vertex, bilateral parietal, and occipital scalp; and posterior hairline. Photographs should be uploaded 2 hours before the visit. Figures 1 and 2 are examples of photographs that should be requested.

Right and left temporal areas
FIGURE 2. Patient full-view photograph of the face, including eyebrows and eyelashes, prior to a teledermatology appointment. Other helpful images include the right and left temporal areas and the occipital area, if relevant (not shown).

 

 

• Request images with 2 or 3 different angles of the area of the scalp with the greatest involvement to help appreciate primary and secondary characteristics.

• Encourage patients to present with clean, recently shampooed, dried, and detangled natural hair, unless they have an itchy or flaky scalp.

• For concerns of scalp, hairline, eyebrow, or facial flaking and scaling, instruct the patient to avoid applying a moisturizer before the visit.

• Instruct the patient to remove false eyelashes, eyelash extensions, eyebrow pencil, hair camouflage, hair accessories, braids, extensions, weaves, twists, and other hairstyles so that the hair can be maneuvered to expose the scalp surface.

• Instruct the patient to have a comb, pic, or brush, or more than one of these implements, available during the visit.

Telemedicine Visit Workflow

Components of the visit workflow include:

• If a stable Wi-Fi connection cannot be established, switch to an audio-only visit to collect a pertinent history. Advise the patient that in-person follow-up must be scheduled.

• Confirm that (1) the patient is in a private setting where the scalp can be viewed and (2) lighting is positioned in front of the patient.

 

 

• Ensure that the patient’s hairline, full face, eyebrows, and eyelashes and, upon request, the vertex and posterior scalp, are completely visible.

• Initiate the virtual scalp examination by instructing the patient how to perform a hair pull test. Then, examine the pattern and distribution of hair loss alongside supplemental photographs.

• Instruct the patient to apply pressure with the fingertips throughout the scalp to help localize tenderness, which, in combination with the pattern of hair loss observed, might inform the diagnosis.

• Instruct the patient to scan the scalp with the fingertips for “bumps” to locate papules, pustules, and keloidal scars.

Diagnostic Pearls

Distribution of Alopecia—The experts noted that the pattern, distribution, and location of hair loss determined from the telemedicine alopecia assessment provided important clues to distinguish the type of alopecia.

Diagnostic clues for diffuse or generalized alopecia include:

• Either of these findings might be indicative of telogen effluvium or acquired trichorrhexis nodosa. Results of the hair pull test can help distinguish between these diagnoses.

• Recent stressful life events along with the presence of telogen hairs extracted during a hair pull test support the diagnosis of telogen effluvium.

 

 

• A history of external stress on the hair—thermal, traction, or chemical—along with broken hair shafts following the hair pull test support the diagnosis of acquired trichorrhexis nodosa.

Diagnostic clues for focal or patchy alopecia include:

• Alopecia areata generally presents as focal hair loss in an annular distribution; pruritus, erythema, and scale are absent.

• Seborrheic dermatitis can present as pruritic erythematous patches with scale distributed on the scalp and, in some cases, in the eyebrows, nasolabial folds, or paranasal skin.7 Some skin of color patients present with petaloid seborrheic dermatitis—pink or hypopigmented polycyclic coalescing rings with minimal scale.7,8

• Discoid lupus erythematosus, similar to seborrheic dermatitis, might present as pruritic, scaly, hypopigmented patches. However, in the experience of the experts, a more common presentation is tender erythematous patches of hair loss with central hypopigmentation and surrounding hyperpigmentation.

Diagnostic clues for vertex and mid scalp alopecia include:

• Androgenetic alopecia typically presents as a reduction of terminal hair density in the vertex and mid scalp regions (with widening through the midline part) and fine hair along the anterior hairline.9 Signs of concomitant hyperandrogenism, including facial hirsutism, acne, and obesity, might be observed.10

• Central centrifugal cicatricial alopecia typically affects the vertex and mid scalp with a shiny scalp appearance and follicular dropout.

Diagnostic clues for frontotemporal alopecia include:

• Frontal fibrosing alopecia (FFA) often presents with spared single terminal hairs (lonely hair sign).

 

 

• Traction alopecia commonly presents with the fringe hair sign.

Scalp Symptoms—The experts noted that the presence of symptoms (eg, pain, tenderness, pruritus) in conjunction with the pattern of hair loss might support the diagnosis of an inflammatory scarring alopecia.

When do symptoms raise suspicion of central centrifugal cicatricial alopecia?

• Suspected in the setting of vertex alopecia associated with tenderness, pain, or itching.

When do symptoms raise suspicion of FFA?

• Suspected when patients experience frontotemporal tenderness, pain, or burning associated with alopecia.

• The skin hue of the affected area might be lighter in color than, and contrast with, the darker hue of the photoaged upper forehead.11

 

 

• The lonely hair sign can aid in diagnosing FFA and distinguish it from the fringe sign of traction alopecia.

• Concurrent madarosis, flesh-colored papules on the cheeks, or lichen planus pigmentosus identified by visual inspection of the face confirms the diagnosis.9,12 Madarosis of the eyebrow was frequently cited by the experts as an associated symptom of FFA.

When do symptoms raise suspicion of lichen planopilaris?

• Suspected in the presence of pruritus, burning, tenderness, or pain associated with perifollicular erythema and scale in the setting of vertex and parietal alopecia.13

• Anagen hair release is observed during the hair pull test.11,14• The experts cited flesh-colored papules and lichen planus pigmentosus as frequently associated symptoms of lichen planopilaris.

Practice Implications

There are limitations to a virtual scalp examination—the inability to perform a scalp biopsy or administer certain treatments—but the consensus of the expert panel is that an initial alopecia assessment can be completed successfully utilizing TD. Although TD is not a replacement for an in-person dermatology visit, this technology has allowed for the diagnosis, treatment, and continuing care of many common dermatologic conditions without the patient needing to travel to the office.5

With the increased frequency of hair loss concerns documented over the last year and more patients seeking TD, it is imperative that dermatologists feel confident performing a virtual hair and scalp examination on all patients.1,3,4

References
  1. Kutlu Ö, Aktas¸ H, I·mren IG, et al. Short-term stress-related increasing cases of alopecia areata during the COVID-19 pandemic. J Dermatolog Treat. 2020;1. doi:10.1080/09546634.2020.1782820
  2. Cline A, Kazemi A, Moy J, et al. A surge in the incidence of telogen effluvium in minority predominant communities heavily impacted by COVID-19. J Am Acad Dermatol. 2021;84:773-775. doi:10.1016/j.jaad.2020.11.032
  3. Kutlu Ö, Metin A. Relative changes in the pattern of diseases presenting in dermatology outpatient clinic in the era of the COVID-19 pandemic. Dermatol Ther. 2020;33:e14096. doi:10.1111/dth.14096
  4. Tanacan E, Aksoy Sarac G, Emeksiz MAC, et al. Changing trends in dermatology practice during COVID-19 pandemic: a single tertiary center experience. Dermatol Ther. 2020;33:e14136. doi:10.1111/dth.14136
  5. Sharma A, Jindal V, Singla P, et al. Will teledermatology be the silver lining during and after COVID-19? Dermatol Ther. 2020;33:e13643. doi:10.1111/dth.13643
  6. Iscrupe L. How to receive virtual medical treatment while under quarantine. Allconnect website. Published March 26, 2020. Accessed December 9, 2021. https://www.allconnect.com/blog/online-doctor-visit-faq
  7. Elgash M, Dlova N, Ogunleye T, et al. Seborrheic dermatitis in skin of color: clinical considerations. J Drugs Dermatol. 2019;18:24-27.
  8. McLaurin CI. Annular facial dermatoses in blacks. Cutis. 1983;32:369-370, 384.
  9. Suchonwanit P, Hector CE, Bin Saif GA, McMichael AJ. Factors affecting the severity of central centrifugal cicatricial alopecia. Int J Dermatol. 2016;55:e338-343. doi:10.1111/ijd.13061
  10. Gabros S, Masood S. Central centrifugal cicatricial alopecia. StatPearls [Internet]. StatPearls Publishing; 2021. Updated July 20, 2021. Accessed December 9, 2021. https://www.ncbi.nlm.nih.gov/books/NBK559187/
  11. Ross EK, Tan E, Shapiro J. Update on primary cicatricial alopecias. J Am Acad Dermatol. 2005;53:1-37. doi:10.1016/j.jaad.2004.06.015
  12. Cobos G, Kim RH, Meehan S, et al. Lichen planus pigmentosus and lichen planopilaris. Dermatol Online J. 2016;22:13030/qt7hp8n6dn.
  13. Lyakhovitsky A, Amichai B, Sizopoulou C, et al. A case series of 46 patients with lichen planopilaris: demographics, clinical evaluation, and treatment experience. J Dermatolog Treat. 2015;26:275-279. doi:10.3109/09546634.2014.933165
  14. Tan E, Martinka M, Ball N, et al. Primary cicatricial alopecias: clinicopathology of 112 cases. J Am Acad Dermatol. 2004;50:25-32. doi:10.1016/j.jaad.2003.04.001
References
  1. Kutlu Ö, Aktas¸ H, I·mren IG, et al. Short-term stress-related increasing cases of alopecia areata during the COVID-19 pandemic. J Dermatolog Treat. 2020;1. doi:10.1080/09546634.2020.1782820
  2. Cline A, Kazemi A, Moy J, et al. A surge in the incidence of telogen effluvium in minority predominant communities heavily impacted by COVID-19. J Am Acad Dermatol. 2021;84:773-775. doi:10.1016/j.jaad.2020.11.032
  3. Kutlu Ö, Metin A. Relative changes in the pattern of diseases presenting in dermatology outpatient clinic in the era of the COVID-19 pandemic. Dermatol Ther. 2020;33:e14096. doi:10.1111/dth.14096
  4. Tanacan E, Aksoy Sarac G, Emeksiz MAC, et al. Changing trends in dermatology practice during COVID-19 pandemic: a single tertiary center experience. Dermatol Ther. 2020;33:e14136. doi:10.1111/dth.14136
  5. Sharma A, Jindal V, Singla P, et al. Will teledermatology be the silver lining during and after COVID-19? Dermatol Ther. 2020;33:e13643. doi:10.1111/dth.13643
  6. Iscrupe L. How to receive virtual medical treatment while under quarantine. Allconnect website. Published March 26, 2020. Accessed December 9, 2021. https://www.allconnect.com/blog/online-doctor-visit-faq
  7. Elgash M, Dlova N, Ogunleye T, et al. Seborrheic dermatitis in skin of color: clinical considerations. J Drugs Dermatol. 2019;18:24-27.
  8. McLaurin CI. Annular facial dermatoses in blacks. Cutis. 1983;32:369-370, 384.
  9. Suchonwanit P, Hector CE, Bin Saif GA, McMichael AJ. Factors affecting the severity of central centrifugal cicatricial alopecia. Int J Dermatol. 2016;55:e338-343. doi:10.1111/ijd.13061
  10. Gabros S, Masood S. Central centrifugal cicatricial alopecia. StatPearls [Internet]. StatPearls Publishing; 2021. Updated July 20, 2021. Accessed December 9, 2021. https://www.ncbi.nlm.nih.gov/books/NBK559187/
  11. Ross EK, Tan E, Shapiro J. Update on primary cicatricial alopecias. J Am Acad Dermatol. 2005;53:1-37. doi:10.1016/j.jaad.2004.06.015
  12. Cobos G, Kim RH, Meehan S, et al. Lichen planus pigmentosus and lichen planopilaris. Dermatol Online J. 2016;22:13030/qt7hp8n6dn.
  13. Lyakhovitsky A, Amichai B, Sizopoulou C, et al. A case series of 46 patients with lichen planopilaris: demographics, clinical evaluation, and treatment experience. J Dermatolog Treat. 2015;26:275-279. doi:10.3109/09546634.2014.933165
  14. Tan E, Martinka M, Ball N, et al. Primary cicatricial alopecias: clinicopathology of 112 cases. J Am Acad Dermatol. 2004;50:25-32. doi:10.1016/j.jaad.2003.04.001
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Statin therapy seems safe in pregnancy

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Fri, 01/07/2022 - 08:07

 

Statins may be safe when used during pregnancy, with no increase in risk for fetal anomalies, although there may be a higher risk for low birth weight and preterm labor, results of a large study from Taiwan suggest.

The Food and Drug Administration relaxed its warning on statins in July 2021, removing the drug’s blanket contraindication in all pregnant women.

Removal of the broadly worded contraindication should “enable health care professionals and patients to make individual decisions about benefit and risk, especially for those at very high risk of heart attack or stroke,” the FDA said in their announcement.

“Our findings suggested that statins may be used during pregnancy with no increase in the rate of congenital anomalies,” wrote Jui-Chun Chang, MD, from Taichung Veterans General Hospital, Taiwan, and colleagues in the new study, published online Dec. 30, 2021, in JAMA Network Open.

“For pregnant women at low risk, statins should be used carefully after assessing the risks of low birth weight and preterm birth,” they said. “For women with dyslipidemia or high-risk cardiovascular disease, as well as those who use statins before conception, statins may be continuously used with no increased risks of neonatal adverse effects.”

The study included more than 1.4 million pregnant women aged 18 years and older who gave birth to their first child between 2004 and 2014.

A total of 469 women (mean age, 32.6 years; mean gestational age, 38.4 weeks) who used statins during pregnancy were compared with 4,690 matched controls who had no statin exposure during pregnancy.

After controlling for maternal comorbidities and age, women who used statins during pregnancy were more apt to have low-birth-weight babies weighing less than 2,500 g (risk ratio, 1.51; 95% confidence interval, 1.05-2.16) and to deliver preterm (RR, 1.99; 95% CI, 1.46-2.71).

The statin-exposed babies were also more likely to have a lower 1-minute Apgar score (RR, 1.83; 95% CI, 1.04-3.20). Importantly, however, there was no increase in risk for fetal anomalies in the statin-exposed infants, the researchers said.

In addition, for women who used statins for more than 3 months prior to pregnancy, maintaining statin use during pregnancy did not increase the risk for adverse neonatal outcomes, including congenital anomalies, low birth weight, preterm birth, very low birth weight, low Apgar scores, and fetal distress.

The researchers called for further studies to confirm their observations.

Funding for the study was provided by Taichung Veterans General Hospital. The authors have disclosed no relevant financial relationships.

A version of this article first appeared on Medscape.com.

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Statins may be safe when used during pregnancy, with no increase in risk for fetal anomalies, although there may be a higher risk for low birth weight and preterm labor, results of a large study from Taiwan suggest.

The Food and Drug Administration relaxed its warning on statins in July 2021, removing the drug’s blanket contraindication in all pregnant women.

Removal of the broadly worded contraindication should “enable health care professionals and patients to make individual decisions about benefit and risk, especially for those at very high risk of heart attack or stroke,” the FDA said in their announcement.

“Our findings suggested that statins may be used during pregnancy with no increase in the rate of congenital anomalies,” wrote Jui-Chun Chang, MD, from Taichung Veterans General Hospital, Taiwan, and colleagues in the new study, published online Dec. 30, 2021, in JAMA Network Open.

“For pregnant women at low risk, statins should be used carefully after assessing the risks of low birth weight and preterm birth,” they said. “For women with dyslipidemia or high-risk cardiovascular disease, as well as those who use statins before conception, statins may be continuously used with no increased risks of neonatal adverse effects.”

The study included more than 1.4 million pregnant women aged 18 years and older who gave birth to their first child between 2004 and 2014.

A total of 469 women (mean age, 32.6 years; mean gestational age, 38.4 weeks) who used statins during pregnancy were compared with 4,690 matched controls who had no statin exposure during pregnancy.

After controlling for maternal comorbidities and age, women who used statins during pregnancy were more apt to have low-birth-weight babies weighing less than 2,500 g (risk ratio, 1.51; 95% confidence interval, 1.05-2.16) and to deliver preterm (RR, 1.99; 95% CI, 1.46-2.71).

The statin-exposed babies were also more likely to have a lower 1-minute Apgar score (RR, 1.83; 95% CI, 1.04-3.20). Importantly, however, there was no increase in risk for fetal anomalies in the statin-exposed infants, the researchers said.

In addition, for women who used statins for more than 3 months prior to pregnancy, maintaining statin use during pregnancy did not increase the risk for adverse neonatal outcomes, including congenital anomalies, low birth weight, preterm birth, very low birth weight, low Apgar scores, and fetal distress.

The researchers called for further studies to confirm their observations.

Funding for the study was provided by Taichung Veterans General Hospital. The authors have disclosed no relevant financial relationships.

A version of this article first appeared on Medscape.com.

 

Statins may be safe when used during pregnancy, with no increase in risk for fetal anomalies, although there may be a higher risk for low birth weight and preterm labor, results of a large study from Taiwan suggest.

The Food and Drug Administration relaxed its warning on statins in July 2021, removing the drug’s blanket contraindication in all pregnant women.

Removal of the broadly worded contraindication should “enable health care professionals and patients to make individual decisions about benefit and risk, especially for those at very high risk of heart attack or stroke,” the FDA said in their announcement.

“Our findings suggested that statins may be used during pregnancy with no increase in the rate of congenital anomalies,” wrote Jui-Chun Chang, MD, from Taichung Veterans General Hospital, Taiwan, and colleagues in the new study, published online Dec. 30, 2021, in JAMA Network Open.

“For pregnant women at low risk, statins should be used carefully after assessing the risks of low birth weight and preterm birth,” they said. “For women with dyslipidemia or high-risk cardiovascular disease, as well as those who use statins before conception, statins may be continuously used with no increased risks of neonatal adverse effects.”

The study included more than 1.4 million pregnant women aged 18 years and older who gave birth to their first child between 2004 and 2014.

A total of 469 women (mean age, 32.6 years; mean gestational age, 38.4 weeks) who used statins during pregnancy were compared with 4,690 matched controls who had no statin exposure during pregnancy.

After controlling for maternal comorbidities and age, women who used statins during pregnancy were more apt to have low-birth-weight babies weighing less than 2,500 g (risk ratio, 1.51; 95% confidence interval, 1.05-2.16) and to deliver preterm (RR, 1.99; 95% CI, 1.46-2.71).

The statin-exposed babies were also more likely to have a lower 1-minute Apgar score (RR, 1.83; 95% CI, 1.04-3.20). Importantly, however, there was no increase in risk for fetal anomalies in the statin-exposed infants, the researchers said.

In addition, for women who used statins for more than 3 months prior to pregnancy, maintaining statin use during pregnancy did not increase the risk for adverse neonatal outcomes, including congenital anomalies, low birth weight, preterm birth, very low birth weight, low Apgar scores, and fetal distress.

The researchers called for further studies to confirm their observations.

Funding for the study was provided by Taichung Veterans General Hospital. The authors have disclosed no relevant financial relationships.

A version of this article first appeared on Medscape.com.

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My favorite physical exam pearls

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Thu, 01/06/2022 - 13:59

 

I would like to start the new year off by returning to the past – when the physical exam was emphasized and utilized in decision making. I think a big reason that its use has diminished in recent years is due to the physical exam not having been emphasized in training.

For those seeking to increase their comfort with conducting the physical exam, below are several methods I have found helpful to use in practice.
 

Examining the pharynx

We were usually taught to ask the patient to say ahhh, with or without a nasty tongue depressor.

Dr. Douglas S. Paauw

When I was on my pediatrics rotation, I was taught to ask the patients to roar like a lion, which always gave a nice look at their posterior pharynx. The kids also really liked doing this, but it might seem a little strange to ask adults to do this.

A technique I have found that works well with adults is to ask them to yawn. I have found that this get me a great look at the pharynx for about half of my patients.
 

Auscultatory percussion for pleural effusions

Guarino and colleagues described a technique that is easily mastered and very effective for determining the presence of pleural effusions.1 It involves placing the stethoscope 3 cm below the last rib in the mid clavicular line and tapping from the apex down to the last rib.

For patients without effusion, a sharp change to a loud percussion note will occur at the last rib.

If the patient has an effusion, the loud percussion note will start at the top of the effusion.

This method was remarkably successful at finding pleural effusions. In the study, Dr. Guarino found a sensitivity of 96% and a specificity of 100%.
 

Physical exam for anemia

Look at the nails and see if they look pale. How can we do this?

The first step is to know what your own hematocrit is. You can then compare the color of your nail to that of the patient.

If you have a normal hematocrit and the patient’s nail bed color is lighter than yours, the patient likely has anemia. If you do this frequently, you will get good at estimating hematocrit. This is especially important if you do not have labs readily available.

Another way to assess for anemia is to look at the color tint of the lower conjunctiva. The best way to look for this is to look at whether there is a generous amount of visible capillaries in the lower conjunctiva. Patients without anemia have a darker red color because of these vessels, whereas patients with anemia are a lighter pink.

Strobach and colleagues2 looked at both nail bed rubor and color tint of the lower conjunctiva and found that both reliably predicted presence and degree of anemia.

 

 

Determining if clubbing is present

Most physicians are aware of Shamroth sign, and use it to evaluate for clubbing. Shamroth sign is the loss of the diamond that is created by placing the back surfaces of opposite terminal phalanges together.

I have found that it’s easier to diagnose mild clubbing by looking at the finger in profile. If the ratio of the distal phalangeal depth compared to the depth across the distal interphalangeal joint is greater than 1:1, then clubbing is present.3

Pearls

1. Have the patient try yawning to better see the pharynx without using a tongue blade.

2. Try the technique of auscultatory percussion to be more accurate at picking up pleural effusions.

3. Know your hematocrit, so you can better use color shade to assess for anemia.

4. Try looking at fingers in profile to pick up clubbing.

Dr. Paauw is professor of medicine in the division of general internal medicine at the University of Washington, Seattle, and serves as 3rd-year medical student clerkship director at the University of Washington. He is a member of the editorial advisory board of Internal Medicine News. Dr. Paauw has no conflicts to disclose. Contact him at [email protected].

References

1. Guarino JR and Guarino JC. Auscultatory percussion: A simple method to detect pleural effusion. J Gen Intern Med. 1994 Feb;9(2):71-4.

2. Strobach RS et al. The value of the physical examination in the diagnosis of anemia. Correlation of the physical findings and the hemoglobin concentration. Arch Intern Med. 1988 Apr;148(4):831-2.

3. Spicknall KE et al. Clubbing: an update on diagnosis, differential diagnosis, pathophysiology, and clinical relevance. J Am Acad Dermatol. 2005 Jun;52(6):1020-8.

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I would like to start the new year off by returning to the past – when the physical exam was emphasized and utilized in decision making. I think a big reason that its use has diminished in recent years is due to the physical exam not having been emphasized in training.

For those seeking to increase their comfort with conducting the physical exam, below are several methods I have found helpful to use in practice.
 

Examining the pharynx

We were usually taught to ask the patient to say ahhh, with or without a nasty tongue depressor.

Dr. Douglas S. Paauw

When I was on my pediatrics rotation, I was taught to ask the patients to roar like a lion, which always gave a nice look at their posterior pharynx. The kids also really liked doing this, but it might seem a little strange to ask adults to do this.

A technique I have found that works well with adults is to ask them to yawn. I have found that this get me a great look at the pharynx for about half of my patients.
 

Auscultatory percussion for pleural effusions

Guarino and colleagues described a technique that is easily mastered and very effective for determining the presence of pleural effusions.1 It involves placing the stethoscope 3 cm below the last rib in the mid clavicular line and tapping from the apex down to the last rib.

For patients without effusion, a sharp change to a loud percussion note will occur at the last rib.

If the patient has an effusion, the loud percussion note will start at the top of the effusion.

This method was remarkably successful at finding pleural effusions. In the study, Dr. Guarino found a sensitivity of 96% and a specificity of 100%.
 

Physical exam for anemia

Look at the nails and see if they look pale. How can we do this?

The first step is to know what your own hematocrit is. You can then compare the color of your nail to that of the patient.

If you have a normal hematocrit and the patient’s nail bed color is lighter than yours, the patient likely has anemia. If you do this frequently, you will get good at estimating hematocrit. This is especially important if you do not have labs readily available.

Another way to assess for anemia is to look at the color tint of the lower conjunctiva. The best way to look for this is to look at whether there is a generous amount of visible capillaries in the lower conjunctiva. Patients without anemia have a darker red color because of these vessels, whereas patients with anemia are a lighter pink.

Strobach and colleagues2 looked at both nail bed rubor and color tint of the lower conjunctiva and found that both reliably predicted presence and degree of anemia.

 

 

Determining if clubbing is present

Most physicians are aware of Shamroth sign, and use it to evaluate for clubbing. Shamroth sign is the loss of the diamond that is created by placing the back surfaces of opposite terminal phalanges together.

I have found that it’s easier to diagnose mild clubbing by looking at the finger in profile. If the ratio of the distal phalangeal depth compared to the depth across the distal interphalangeal joint is greater than 1:1, then clubbing is present.3

Pearls

1. Have the patient try yawning to better see the pharynx without using a tongue blade.

2. Try the technique of auscultatory percussion to be more accurate at picking up pleural effusions.

3. Know your hematocrit, so you can better use color shade to assess for anemia.

4. Try looking at fingers in profile to pick up clubbing.

Dr. Paauw is professor of medicine in the division of general internal medicine at the University of Washington, Seattle, and serves as 3rd-year medical student clerkship director at the University of Washington. He is a member of the editorial advisory board of Internal Medicine News. Dr. Paauw has no conflicts to disclose. Contact him at [email protected].

References

1. Guarino JR and Guarino JC. Auscultatory percussion: A simple method to detect pleural effusion. J Gen Intern Med. 1994 Feb;9(2):71-4.

2. Strobach RS et al. The value of the physical examination in the diagnosis of anemia. Correlation of the physical findings and the hemoglobin concentration. Arch Intern Med. 1988 Apr;148(4):831-2.

3. Spicknall KE et al. Clubbing: an update on diagnosis, differential diagnosis, pathophysiology, and clinical relevance. J Am Acad Dermatol. 2005 Jun;52(6):1020-8.

 

I would like to start the new year off by returning to the past – when the physical exam was emphasized and utilized in decision making. I think a big reason that its use has diminished in recent years is due to the physical exam not having been emphasized in training.

For those seeking to increase their comfort with conducting the physical exam, below are several methods I have found helpful to use in practice.
 

Examining the pharynx

We were usually taught to ask the patient to say ahhh, with or without a nasty tongue depressor.

Dr. Douglas S. Paauw

When I was on my pediatrics rotation, I was taught to ask the patients to roar like a lion, which always gave a nice look at their posterior pharynx. The kids also really liked doing this, but it might seem a little strange to ask adults to do this.

A technique I have found that works well with adults is to ask them to yawn. I have found that this get me a great look at the pharynx for about half of my patients.
 

Auscultatory percussion for pleural effusions

Guarino and colleagues described a technique that is easily mastered and very effective for determining the presence of pleural effusions.1 It involves placing the stethoscope 3 cm below the last rib in the mid clavicular line and tapping from the apex down to the last rib.

For patients without effusion, a sharp change to a loud percussion note will occur at the last rib.

If the patient has an effusion, the loud percussion note will start at the top of the effusion.

This method was remarkably successful at finding pleural effusions. In the study, Dr. Guarino found a sensitivity of 96% and a specificity of 100%.
 

Physical exam for anemia

Look at the nails and see if they look pale. How can we do this?

The first step is to know what your own hematocrit is. You can then compare the color of your nail to that of the patient.

If you have a normal hematocrit and the patient’s nail bed color is lighter than yours, the patient likely has anemia. If you do this frequently, you will get good at estimating hematocrit. This is especially important if you do not have labs readily available.

Another way to assess for anemia is to look at the color tint of the lower conjunctiva. The best way to look for this is to look at whether there is a generous amount of visible capillaries in the lower conjunctiva. Patients without anemia have a darker red color because of these vessels, whereas patients with anemia are a lighter pink.

Strobach and colleagues2 looked at both nail bed rubor and color tint of the lower conjunctiva and found that both reliably predicted presence and degree of anemia.

 

 

Determining if clubbing is present

Most physicians are aware of Shamroth sign, and use it to evaluate for clubbing. Shamroth sign is the loss of the diamond that is created by placing the back surfaces of opposite terminal phalanges together.

I have found that it’s easier to diagnose mild clubbing by looking at the finger in profile. If the ratio of the distal phalangeal depth compared to the depth across the distal interphalangeal joint is greater than 1:1, then clubbing is present.3

Pearls

1. Have the patient try yawning to better see the pharynx without using a tongue blade.

2. Try the technique of auscultatory percussion to be more accurate at picking up pleural effusions.

3. Know your hematocrit, so you can better use color shade to assess for anemia.

4. Try looking at fingers in profile to pick up clubbing.

Dr. Paauw is professor of medicine in the division of general internal medicine at the University of Washington, Seattle, and serves as 3rd-year medical student clerkship director at the University of Washington. He is a member of the editorial advisory board of Internal Medicine News. Dr. Paauw has no conflicts to disclose. Contact him at [email protected].

References

1. Guarino JR and Guarino JC. Auscultatory percussion: A simple method to detect pleural effusion. J Gen Intern Med. 1994 Feb;9(2):71-4.

2. Strobach RS et al. The value of the physical examination in the diagnosis of anemia. Correlation of the physical findings and the hemoglobin concentration. Arch Intern Med. 1988 Apr;148(4):831-2.

3. Spicknall KE et al. Clubbing: an update on diagnosis, differential diagnosis, pathophysiology, and clinical relevance. J Am Acad Dermatol. 2005 Jun;52(6):1020-8.

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First ‘flurona’ cases reported in the U.S.

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Thu, 01/06/2022 - 13:27

 

Health authorities in California, Texas, and Kansas have reported cases of “flurona,” in which people have seasonal flu and COVID-19 at the same time.

The first known case was detected in Israel, but until the first week of January no cases had been reported in the United States.

In Los Angeles, a teenaged boy tested positive for both illnesses at a COVID testing site in Brentwood, the Los Angeles Times reported. The child’s mother tested positive for COVID the next day.

“This is the first one that we’re aware of,” Steve Farzam, chief operating officer of 911 COVID Testing, told the LA Times. “In and of itself, it’s not overly concerning; however, it is concerning and can be problematic for someone who has pre-existing medical conditions, anyone who is immunocompromised.”

The teen and his family of five had just returned from vacation in Cabo San Lucas, Mexico. All said they tested negative before the trip, but they tested again when they got home because one of the children had a runny nose, Mr. Farzam said.

The boy, who had not been vaccinated for COVID or the flu, doesn’t have serious symptoms and is recovering at home.

In Houston, a 17-year-old boy, his siblings, and his father felt sick a few days before Christmas and went in for testing, TV station KTRK reported. The teen tested positive for both the flu and COVID.

“I ended up getting tested the day before Christmas for strep throat, flu and COVID,” the teenager, Alec Zierlein, told KTRK. “I didn’t think I had any of the three. It felt like a mild cold.”

Health officials reported Jan. 5 that a flurona case was detected in Hays, Kan., TV station WIBW reported. The patient was being treated in the ICU. No other details were provided. In Israel, flurona was first found in an unvaccinated pregnant woman at Rabin Medical Center in Petach Tikva, according to the Times of Israel. She tested positive for both viruses when she arrived at the medical center, and doctors double-checked to confirm her diagnosis. The woman had mild symptoms and was released in good condition, the news outlet reported.

Public health officials in Israel said they are concerned that an increase in both viruses at the same time could lead to many hospitalizations.

A version of this article first appeared on WebMD.com.

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Health authorities in California, Texas, and Kansas have reported cases of “flurona,” in which people have seasonal flu and COVID-19 at the same time.

The first known case was detected in Israel, but until the first week of January no cases had been reported in the United States.

In Los Angeles, a teenaged boy tested positive for both illnesses at a COVID testing site in Brentwood, the Los Angeles Times reported. The child’s mother tested positive for COVID the next day.

“This is the first one that we’re aware of,” Steve Farzam, chief operating officer of 911 COVID Testing, told the LA Times. “In and of itself, it’s not overly concerning; however, it is concerning and can be problematic for someone who has pre-existing medical conditions, anyone who is immunocompromised.”

The teen and his family of five had just returned from vacation in Cabo San Lucas, Mexico. All said they tested negative before the trip, but they tested again when they got home because one of the children had a runny nose, Mr. Farzam said.

The boy, who had not been vaccinated for COVID or the flu, doesn’t have serious symptoms and is recovering at home.

In Houston, a 17-year-old boy, his siblings, and his father felt sick a few days before Christmas and went in for testing, TV station KTRK reported. The teen tested positive for both the flu and COVID.

“I ended up getting tested the day before Christmas for strep throat, flu and COVID,” the teenager, Alec Zierlein, told KTRK. “I didn’t think I had any of the three. It felt like a mild cold.”

Health officials reported Jan. 5 that a flurona case was detected in Hays, Kan., TV station WIBW reported. The patient was being treated in the ICU. No other details were provided. In Israel, flurona was first found in an unvaccinated pregnant woman at Rabin Medical Center in Petach Tikva, according to the Times of Israel. She tested positive for both viruses when she arrived at the medical center, and doctors double-checked to confirm her diagnosis. The woman had mild symptoms and was released in good condition, the news outlet reported.

Public health officials in Israel said they are concerned that an increase in both viruses at the same time could lead to many hospitalizations.

A version of this article first appeared on WebMD.com.

 

Health authorities in California, Texas, and Kansas have reported cases of “flurona,” in which people have seasonal flu and COVID-19 at the same time.

The first known case was detected in Israel, but until the first week of January no cases had been reported in the United States.

In Los Angeles, a teenaged boy tested positive for both illnesses at a COVID testing site in Brentwood, the Los Angeles Times reported. The child’s mother tested positive for COVID the next day.

“This is the first one that we’re aware of,” Steve Farzam, chief operating officer of 911 COVID Testing, told the LA Times. “In and of itself, it’s not overly concerning; however, it is concerning and can be problematic for someone who has pre-existing medical conditions, anyone who is immunocompromised.”

The teen and his family of five had just returned from vacation in Cabo San Lucas, Mexico. All said they tested negative before the trip, but they tested again when they got home because one of the children had a runny nose, Mr. Farzam said.

The boy, who had not been vaccinated for COVID or the flu, doesn’t have serious symptoms and is recovering at home.

In Houston, a 17-year-old boy, his siblings, and his father felt sick a few days before Christmas and went in for testing, TV station KTRK reported. The teen tested positive for both the flu and COVID.

“I ended up getting tested the day before Christmas for strep throat, flu and COVID,” the teenager, Alec Zierlein, told KTRK. “I didn’t think I had any of the three. It felt like a mild cold.”

Health officials reported Jan. 5 that a flurona case was detected in Hays, Kan., TV station WIBW reported. The patient was being treated in the ICU. No other details were provided. In Israel, flurona was first found in an unvaccinated pregnant woman at Rabin Medical Center in Petach Tikva, according to the Times of Israel. She tested positive for both viruses when she arrived at the medical center, and doctors double-checked to confirm her diagnosis. The woman had mild symptoms and was released in good condition, the news outlet reported.

Public health officials in Israel said they are concerned that an increase in both viruses at the same time could lead to many hospitalizations.

A version of this article first appeared on WebMD.com.

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Soon-to-be medical student awarded $10K after spotting melanoma

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Fri, 01/07/2022 - 08:08

 

A soon-to-be medical student and former oncology ward volunteer has received a $10,000 scholarship for her education recently after tipping off a Vancouver Canucks staff member about a cancerous mole on the back of his neck during a National Hockey League game in Seattle this past October.

Sitting immediately behind the visiting team’s bench, Nadia Popovici wrote a large-font message on her cell phone and tapped the protective glass to get the attention of Brian Hamilton, assistant equipment manager for the Canucks.

“The mole on the back of your neck is possibly cancerous. Please go see a doctor!” read the message.

Mr. Hamilton acted on the tip and was eventually diagnosed with a malignant stage II melanoma, according to a report in the Seattle Times.

As noted in a Medscape Q&A, “ABCDE” is the acronym that indicates the visible, physical characteristics suggestive of melanoma. ABCDE stands for asymmetry, irregular border, color variations (especially red, white, and blue tones in a brown or black lesion), diameter greater than 6 mm, and elevated surface. The lesions may itch, bleed, ulcerate, or develop satellites.

The Canucks returned to Seattle recently for another game against the Seattle Kraken, and the visiting team posted a note on social media from Mr. Hamilton seeking the identity of the good Samaritan.

“... the message you showed me on your cell phone will forever be etched into my brain and has made a true life-changing difference for me and my family,” wrote Mr. Hamilton.

Within hours, Ms. Popovici’s mother, whose family has season tickets to the Seattle team’s games, responded to the message.

Ms. Popovici and Mr. Hamilton met up again at the Jan. 1 game, where Ms. Popovici was rewarded with a $10,000 medical school scholarship in a surprise announcement, shared on Twitter and liked more than 42,000 times.

“She didn’t take me out of a burning car like the big stories, but she took me out of a slow fire. And the words out of the doctor’s mouth were, if I ignored that for 4-5 years, I wouldn’t be here,” Mr. Hamilton said at a news conference on Jan. 1.

Ms. Popovici says she has been accepted to several medical schools and will start school in the fall, according to a press release from the National Hockey League.

More money for medical school may be on the way for Ms. Popovici after a GoFundMe page was started. With a goal of $25,000, the fund had received just over $2,500 as of Jan. 4.

“The teams made a kind gesture of giving her 10K, but I think we can do better!” Josh Doxey, a sales manager from Lehi, Utah, wrote on the page he created for Ms. Popovici.

Mr. Doxey told this news organization, “I started the GoFundMe thinking it would be a nice gesture especially for someone going into health care after 2 crazy years of COVID ... I have gotten in touch with her and her mother, and have been chatting with both. They both seem incredibly kind, grateful, and humble.”

A version of this article first appeared on Medscape.com.

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A soon-to-be medical student and former oncology ward volunteer has received a $10,000 scholarship for her education recently after tipping off a Vancouver Canucks staff member about a cancerous mole on the back of his neck during a National Hockey League game in Seattle this past October.

Sitting immediately behind the visiting team’s bench, Nadia Popovici wrote a large-font message on her cell phone and tapped the protective glass to get the attention of Brian Hamilton, assistant equipment manager for the Canucks.

“The mole on the back of your neck is possibly cancerous. Please go see a doctor!” read the message.

Mr. Hamilton acted on the tip and was eventually diagnosed with a malignant stage II melanoma, according to a report in the Seattle Times.

As noted in a Medscape Q&A, “ABCDE” is the acronym that indicates the visible, physical characteristics suggestive of melanoma. ABCDE stands for asymmetry, irregular border, color variations (especially red, white, and blue tones in a brown or black lesion), diameter greater than 6 mm, and elevated surface. The lesions may itch, bleed, ulcerate, or develop satellites.

The Canucks returned to Seattle recently for another game against the Seattle Kraken, and the visiting team posted a note on social media from Mr. Hamilton seeking the identity of the good Samaritan.

“... the message you showed me on your cell phone will forever be etched into my brain and has made a true life-changing difference for me and my family,” wrote Mr. Hamilton.

Within hours, Ms. Popovici’s mother, whose family has season tickets to the Seattle team’s games, responded to the message.

Ms. Popovici and Mr. Hamilton met up again at the Jan. 1 game, where Ms. Popovici was rewarded with a $10,000 medical school scholarship in a surprise announcement, shared on Twitter and liked more than 42,000 times.

“She didn’t take me out of a burning car like the big stories, but she took me out of a slow fire. And the words out of the doctor’s mouth were, if I ignored that for 4-5 years, I wouldn’t be here,” Mr. Hamilton said at a news conference on Jan. 1.

Ms. Popovici says she has been accepted to several medical schools and will start school in the fall, according to a press release from the National Hockey League.

More money for medical school may be on the way for Ms. Popovici after a GoFundMe page was started. With a goal of $25,000, the fund had received just over $2,500 as of Jan. 4.

“The teams made a kind gesture of giving her 10K, but I think we can do better!” Josh Doxey, a sales manager from Lehi, Utah, wrote on the page he created for Ms. Popovici.

Mr. Doxey told this news organization, “I started the GoFundMe thinking it would be a nice gesture especially for someone going into health care after 2 crazy years of COVID ... I have gotten in touch with her and her mother, and have been chatting with both. They both seem incredibly kind, grateful, and humble.”

A version of this article first appeared on Medscape.com.

 

A soon-to-be medical student and former oncology ward volunteer has received a $10,000 scholarship for her education recently after tipping off a Vancouver Canucks staff member about a cancerous mole on the back of his neck during a National Hockey League game in Seattle this past October.

Sitting immediately behind the visiting team’s bench, Nadia Popovici wrote a large-font message on her cell phone and tapped the protective glass to get the attention of Brian Hamilton, assistant equipment manager for the Canucks.

“The mole on the back of your neck is possibly cancerous. Please go see a doctor!” read the message.

Mr. Hamilton acted on the tip and was eventually diagnosed with a malignant stage II melanoma, according to a report in the Seattle Times.

As noted in a Medscape Q&A, “ABCDE” is the acronym that indicates the visible, physical characteristics suggestive of melanoma. ABCDE stands for asymmetry, irregular border, color variations (especially red, white, and blue tones in a brown or black lesion), diameter greater than 6 mm, and elevated surface. The lesions may itch, bleed, ulcerate, or develop satellites.

The Canucks returned to Seattle recently for another game against the Seattle Kraken, and the visiting team posted a note on social media from Mr. Hamilton seeking the identity of the good Samaritan.

“... the message you showed me on your cell phone will forever be etched into my brain and has made a true life-changing difference for me and my family,” wrote Mr. Hamilton.

Within hours, Ms. Popovici’s mother, whose family has season tickets to the Seattle team’s games, responded to the message.

Ms. Popovici and Mr. Hamilton met up again at the Jan. 1 game, where Ms. Popovici was rewarded with a $10,000 medical school scholarship in a surprise announcement, shared on Twitter and liked more than 42,000 times.

“She didn’t take me out of a burning car like the big stories, but she took me out of a slow fire. And the words out of the doctor’s mouth were, if I ignored that for 4-5 years, I wouldn’t be here,” Mr. Hamilton said at a news conference on Jan. 1.

Ms. Popovici says she has been accepted to several medical schools and will start school in the fall, according to a press release from the National Hockey League.

More money for medical school may be on the way for Ms. Popovici after a GoFundMe page was started. With a goal of $25,000, the fund had received just over $2,500 as of Jan. 4.

“The teams made a kind gesture of giving her 10K, but I think we can do better!” Josh Doxey, a sales manager from Lehi, Utah, wrote on the page he created for Ms. Popovici.

Mr. Doxey told this news organization, “I started the GoFundMe thinking it would be a nice gesture especially for someone going into health care after 2 crazy years of COVID ... I have gotten in touch with her and her mother, and have been chatting with both. They both seem incredibly kind, grateful, and humble.”

A version of this article first appeared on Medscape.com.

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At-home geriatric assessment offers cost-effective alternative to hospital

Article Type
Changed
Mon, 01/10/2022 - 11:07

 

Older adults who avoided hospital admission with at-home geriatric assessment and home-based care incurred significantly lower costs compared with those hospitalized, in a new study.

The comprehensive geriatric assessment (CGA) is an established strategy for guiding care of older adults in a hospital setting, but its use in other settings has not been well studied, Surya Singh, PhD, of the University of Oxford (England), and colleagues wrote in their paper published in Age and Ageing. Hospital at home is active treatment by health care professionals in the patient’s home for a condition that otherwise would require acute hospital inpatient care, for a limited time period.

Interest in providing health care in the home as an alternative to hospitalization is on the rise as a way to improve patient outcomes and reduce costs, but actual cost-effectiveness data on HAH interventions are limited, the authors said. “Wide scale implementation of such services has also been constrained by the practical difficulties of designing and delivering services that cut across primary and secondary care, might involve social care and require different workforce and funding arrangements.”

In this study, the researchers conducted a cost-effectiveness analysis alongside a randomized trial of an admission avoidance CGA hospital at home (CGAHAH) service as an alternative to hospital admission. They identified individuals aged 65 years and older who were living in the community but being considered for an unplanned hospital admission in the United Kingdom. A total of 700 individuals were randomized to CGAHAH and 355 to hospital care using a 2:1 ratio. Patients were assessed at baseline in the community or in an acute care setting before being transferred to CGAHAH service. These services included access to social workers, home care, district nursing, community rehabilitation, community mental health services and acute hospital services, such as diagnostic tests and transfer to hospital. The core workforce usually included consultant geriatricians, junior doctors, nurse practitioners, health care assistants or support workers, physiotherapists, occupational therapists, and community pharmacists. There were at least daily virtual ward rounds
 

Comparison between HAH and in-hospital groups

Patients in the CGAHAH group had a mean of 7.17 days of care, and those in hospital had a mean of 4.92 hospital days. At 6 months’ follow-up, the mean number of care days was 9.47 in the CGAHAH group and 10.58 in the hospital group, which was a nonsignificant difference.

“For complete cases, we found that allocation to CGAHAH resulted in 3 fewer days in hospital, a difference that was reduced to 1 day at 6 months follow-up,” the researchers wrote.

Overall, after adjusting for baseline variables, the health and social care costs after 6 months were less for CGAHAH than admission to hospital. The average cost differences between the two were approximately $3,000 or 2,265 pounds. The cost difference remained and increased to a mean difference of 2,840 pounds in favor of HAH after adding informal care/societal costs.

In addition, patients randomized to CGAHAH were less likely to have been admitted to long-term residential care at 6 months follow-up, compared with the hospital group; the mean days in residential care at 6 months were 3.43 and 6.14, respectively.

Both groups showed an approximate 15% decrease in measures of quality of life from baseline to 6 months, and no differences were noted in quality-adjusted survival between the groups.
 

Pandemic ‘has accelerated interest’ in HAH

“Health systems around the world are exploring alternatives to hospital admission, such as hospital at home, to act as a buffer to the increasing demand for hospital care,” corresponding author Sasha Shepperd, MSc, DPhil, said in an interview. “This is partly due to a growing older population with increased health needs, but also an emphasis on providing health care that limits a decline in capacity for the older population. Inevitably, the COVID-19 pandemic has accelerated interest in hospital at home to create additional acute health care capacity.”

Dr. Sasha Shepperd

The take home-message supports the home service option. “If you can access a hospital-at-home service, consider this as an option for older people who would otherwise be admitted to hospital and are eligible for hospital at home care. However, is important that the provision of hospital at home is adequately resourced, and that families and caregivers are supported,” she said.

Barriers include delivering a different type of service that requires easy access to hospital services, including admission if required; a trained workforce to provide multidisciplinary care in a patient’s home; and ensuring a good fit with existing health and social care services,” Dr. Shepperd said.

Future research areas include the demands placed on caregivers from hospital-at-home services, and how the provision of hospital at home impacts hospital and community services, she added.

Findings support use of HAH

The data from the current study support the use of a hospital at home concept, especially in the geriatric age population, for acute health conditions that could be managed at home rather than acutely in a hospital-based environment,” Noel Deep, MD, emphasized in an interview.

Dr. Deep, who is a general internist in group practice in Antigo, Wisc., said he was not surprised by the study findings.

“I am a big proponent of the hospital at home approach to taking care of patients who can be safely and appropriately managed in the familiarity and comfort of their own home environment with help from physicians, nurses, and other home health care services,” he said. “It is a valuable option for appropriately screened and selected patients to be provided this approach to management of their acute health care situations.”

Primary care physicians should explore using HAH when faced with the decision of admitting an elderly individual to the hospital for management of an acute worsening of a chronic medical condition or a reversible acute illness, said Dr. Deep, who serves on the editorial advisory board of Internal Medicine News.

The current study reinforces previous studies and data showing the benefits of managing acute health problems of elderly individuals in their home environment. These benefits include “an opportunity to free up the emergency rooms and hospitals for providing care to those individuals who truly would be best served by being admitted to the hospital,” Dr. Deep explained. Home care for the elderly “would also lead to decreased utilization of the personal protective equipment and limit exposure of the vulnerable elderly individuals to the coronavirus. Primary care physicians should always explore this possibility of providing care to the patients in their homes if it is a viable option.

“While our practice environment [in the United States] is slightly different than that referenced in this article, many, if not almost all, of our primary care physicians provide care to the geriatric age population and provide assessment and management which would be comparable to this comprehensive geriatric assessment that is discussed in the article,” and many primary care physicians have seen similar results in outcomes that the study shows, said Dr. Deep. The available research and expert opinions are quite similar and agree upon the positive outcomes in terms of providing the CGAHAH approach.
 

Study is important but raises questions

The study is important because patient-centered, effective care should be the goal of any health system, William Golden, MD, of the University of Arkansas for Medical Sciences, Little Rock, said in an interview. 

Dr. Golden also noted that the study raised a number of questions. How each patient entered the treatment protocol was not clear. “Similarly, it is not clear whether admission criteria and resource costs in England cross to the United States experience.”

“Having close follow up of patients at home as opposed to an ‘observation status’ could be a nice innovation, but more details are needed to consider implementation in a specific community setting,” he emphasized.

As for the clinical value of the study for primary care, “primary care professionals should welcome well-staffed alternatives to inpatient care for select patient presentations,” said Dr. Golden, who is also a member of the editorial advisory board of Internal Medicine News.

The current study does not identify the conditions that were treated at home and the logistics of delivering such services, which limits comparison with what experts have seen in practice in terms of outcomes using the CGAHAH, he said. “Interested practitioners would benefit from literature detailing the staffing and decision support tools that form the core framework of this innovation.”
 

Limitations and strengths of study, according to authors

The study findings were limited by several factors including the calculation of CGAHAH based on service budgets, rather than from collecting information on the actual resources used; potential errors in patients’ estimation of their informal care; and lack of data on a differential impact of CGAHAH for underserved communities, the researchers noted.

However, the results were strengthened by the large study population and randomized design, and support the value of CGAHAH, which addresses the need for management of multiple long-term conditions and the potential decline in functional and cognitive ability in older adults, they said. Providing CGAHAH as an alternative to admission to hospital for older people, with a focus on multidimensional assessment, is one option that might reduce reliance on hospitalization and residential care and at a lower cost.

The study was supported by the National Institute for Health Research, and several coauthors received individual grants from the NIHR, with no other financial conflicts to disclose. Dr. Golden and Dr. Deep had no financial conflicts to disclose.

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Older adults who avoided hospital admission with at-home geriatric assessment and home-based care incurred significantly lower costs compared with those hospitalized, in a new study.

The comprehensive geriatric assessment (CGA) is an established strategy for guiding care of older adults in a hospital setting, but its use in other settings has not been well studied, Surya Singh, PhD, of the University of Oxford (England), and colleagues wrote in their paper published in Age and Ageing. Hospital at home is active treatment by health care professionals in the patient’s home for a condition that otherwise would require acute hospital inpatient care, for a limited time period.

Interest in providing health care in the home as an alternative to hospitalization is on the rise as a way to improve patient outcomes and reduce costs, but actual cost-effectiveness data on HAH interventions are limited, the authors said. “Wide scale implementation of such services has also been constrained by the practical difficulties of designing and delivering services that cut across primary and secondary care, might involve social care and require different workforce and funding arrangements.”

In this study, the researchers conducted a cost-effectiveness analysis alongside a randomized trial of an admission avoidance CGA hospital at home (CGAHAH) service as an alternative to hospital admission. They identified individuals aged 65 years and older who were living in the community but being considered for an unplanned hospital admission in the United Kingdom. A total of 700 individuals were randomized to CGAHAH and 355 to hospital care using a 2:1 ratio. Patients were assessed at baseline in the community or in an acute care setting before being transferred to CGAHAH service. These services included access to social workers, home care, district nursing, community rehabilitation, community mental health services and acute hospital services, such as diagnostic tests and transfer to hospital. The core workforce usually included consultant geriatricians, junior doctors, nurse practitioners, health care assistants or support workers, physiotherapists, occupational therapists, and community pharmacists. There were at least daily virtual ward rounds
 

Comparison between HAH and in-hospital groups

Patients in the CGAHAH group had a mean of 7.17 days of care, and those in hospital had a mean of 4.92 hospital days. At 6 months’ follow-up, the mean number of care days was 9.47 in the CGAHAH group and 10.58 in the hospital group, which was a nonsignificant difference.

“For complete cases, we found that allocation to CGAHAH resulted in 3 fewer days in hospital, a difference that was reduced to 1 day at 6 months follow-up,” the researchers wrote.

Overall, after adjusting for baseline variables, the health and social care costs after 6 months were less for CGAHAH than admission to hospital. The average cost differences between the two were approximately $3,000 or 2,265 pounds. The cost difference remained and increased to a mean difference of 2,840 pounds in favor of HAH after adding informal care/societal costs.

In addition, patients randomized to CGAHAH were less likely to have been admitted to long-term residential care at 6 months follow-up, compared with the hospital group; the mean days in residential care at 6 months were 3.43 and 6.14, respectively.

Both groups showed an approximate 15% decrease in measures of quality of life from baseline to 6 months, and no differences were noted in quality-adjusted survival between the groups.
 

Pandemic ‘has accelerated interest’ in HAH

“Health systems around the world are exploring alternatives to hospital admission, such as hospital at home, to act as a buffer to the increasing demand for hospital care,” corresponding author Sasha Shepperd, MSc, DPhil, said in an interview. “This is partly due to a growing older population with increased health needs, but also an emphasis on providing health care that limits a decline in capacity for the older population. Inevitably, the COVID-19 pandemic has accelerated interest in hospital at home to create additional acute health care capacity.”

Dr. Sasha Shepperd

The take home-message supports the home service option. “If you can access a hospital-at-home service, consider this as an option for older people who would otherwise be admitted to hospital and are eligible for hospital at home care. However, is important that the provision of hospital at home is adequately resourced, and that families and caregivers are supported,” she said.

Barriers include delivering a different type of service that requires easy access to hospital services, including admission if required; a trained workforce to provide multidisciplinary care in a patient’s home; and ensuring a good fit with existing health and social care services,” Dr. Shepperd said.

Future research areas include the demands placed on caregivers from hospital-at-home services, and how the provision of hospital at home impacts hospital and community services, she added.

Findings support use of HAH

The data from the current study support the use of a hospital at home concept, especially in the geriatric age population, for acute health conditions that could be managed at home rather than acutely in a hospital-based environment,” Noel Deep, MD, emphasized in an interview.

Dr. Deep, who is a general internist in group practice in Antigo, Wisc., said he was not surprised by the study findings.

“I am a big proponent of the hospital at home approach to taking care of patients who can be safely and appropriately managed in the familiarity and comfort of their own home environment with help from physicians, nurses, and other home health care services,” he said. “It is a valuable option for appropriately screened and selected patients to be provided this approach to management of their acute health care situations.”

Primary care physicians should explore using HAH when faced with the decision of admitting an elderly individual to the hospital for management of an acute worsening of a chronic medical condition or a reversible acute illness, said Dr. Deep, who serves on the editorial advisory board of Internal Medicine News.

The current study reinforces previous studies and data showing the benefits of managing acute health problems of elderly individuals in their home environment. These benefits include “an opportunity to free up the emergency rooms and hospitals for providing care to those individuals who truly would be best served by being admitted to the hospital,” Dr. Deep explained. Home care for the elderly “would also lead to decreased utilization of the personal protective equipment and limit exposure of the vulnerable elderly individuals to the coronavirus. Primary care physicians should always explore this possibility of providing care to the patients in their homes if it is a viable option.

“While our practice environment [in the United States] is slightly different than that referenced in this article, many, if not almost all, of our primary care physicians provide care to the geriatric age population and provide assessment and management which would be comparable to this comprehensive geriatric assessment that is discussed in the article,” and many primary care physicians have seen similar results in outcomes that the study shows, said Dr. Deep. The available research and expert opinions are quite similar and agree upon the positive outcomes in terms of providing the CGAHAH approach.
 

Study is important but raises questions

The study is important because patient-centered, effective care should be the goal of any health system, William Golden, MD, of the University of Arkansas for Medical Sciences, Little Rock, said in an interview. 

Dr. Golden also noted that the study raised a number of questions. How each patient entered the treatment protocol was not clear. “Similarly, it is not clear whether admission criteria and resource costs in England cross to the United States experience.”

“Having close follow up of patients at home as opposed to an ‘observation status’ could be a nice innovation, but more details are needed to consider implementation in a specific community setting,” he emphasized.

As for the clinical value of the study for primary care, “primary care professionals should welcome well-staffed alternatives to inpatient care for select patient presentations,” said Dr. Golden, who is also a member of the editorial advisory board of Internal Medicine News.

The current study does not identify the conditions that were treated at home and the logistics of delivering such services, which limits comparison with what experts have seen in practice in terms of outcomes using the CGAHAH, he said. “Interested practitioners would benefit from literature detailing the staffing and decision support tools that form the core framework of this innovation.”
 

Limitations and strengths of study, according to authors

The study findings were limited by several factors including the calculation of CGAHAH based on service budgets, rather than from collecting information on the actual resources used; potential errors in patients’ estimation of their informal care; and lack of data on a differential impact of CGAHAH for underserved communities, the researchers noted.

However, the results were strengthened by the large study population and randomized design, and support the value of CGAHAH, which addresses the need for management of multiple long-term conditions and the potential decline in functional and cognitive ability in older adults, they said. Providing CGAHAH as an alternative to admission to hospital for older people, with a focus on multidimensional assessment, is one option that might reduce reliance on hospitalization and residential care and at a lower cost.

The study was supported by the National Institute for Health Research, and several coauthors received individual grants from the NIHR, with no other financial conflicts to disclose. Dr. Golden and Dr. Deep had no financial conflicts to disclose.

 

Older adults who avoided hospital admission with at-home geriatric assessment and home-based care incurred significantly lower costs compared with those hospitalized, in a new study.

The comprehensive geriatric assessment (CGA) is an established strategy for guiding care of older adults in a hospital setting, but its use in other settings has not been well studied, Surya Singh, PhD, of the University of Oxford (England), and colleagues wrote in their paper published in Age and Ageing. Hospital at home is active treatment by health care professionals in the patient’s home for a condition that otherwise would require acute hospital inpatient care, for a limited time period.

Interest in providing health care in the home as an alternative to hospitalization is on the rise as a way to improve patient outcomes and reduce costs, but actual cost-effectiveness data on HAH interventions are limited, the authors said. “Wide scale implementation of such services has also been constrained by the practical difficulties of designing and delivering services that cut across primary and secondary care, might involve social care and require different workforce and funding arrangements.”

In this study, the researchers conducted a cost-effectiveness analysis alongside a randomized trial of an admission avoidance CGA hospital at home (CGAHAH) service as an alternative to hospital admission. They identified individuals aged 65 years and older who were living in the community but being considered for an unplanned hospital admission in the United Kingdom. A total of 700 individuals were randomized to CGAHAH and 355 to hospital care using a 2:1 ratio. Patients were assessed at baseline in the community or in an acute care setting before being transferred to CGAHAH service. These services included access to social workers, home care, district nursing, community rehabilitation, community mental health services and acute hospital services, such as diagnostic tests and transfer to hospital. The core workforce usually included consultant geriatricians, junior doctors, nurse practitioners, health care assistants or support workers, physiotherapists, occupational therapists, and community pharmacists. There were at least daily virtual ward rounds
 

Comparison between HAH and in-hospital groups

Patients in the CGAHAH group had a mean of 7.17 days of care, and those in hospital had a mean of 4.92 hospital days. At 6 months’ follow-up, the mean number of care days was 9.47 in the CGAHAH group and 10.58 in the hospital group, which was a nonsignificant difference.

“For complete cases, we found that allocation to CGAHAH resulted in 3 fewer days in hospital, a difference that was reduced to 1 day at 6 months follow-up,” the researchers wrote.

Overall, after adjusting for baseline variables, the health and social care costs after 6 months were less for CGAHAH than admission to hospital. The average cost differences between the two were approximately $3,000 or 2,265 pounds. The cost difference remained and increased to a mean difference of 2,840 pounds in favor of HAH after adding informal care/societal costs.

In addition, patients randomized to CGAHAH were less likely to have been admitted to long-term residential care at 6 months follow-up, compared with the hospital group; the mean days in residential care at 6 months were 3.43 and 6.14, respectively.

Both groups showed an approximate 15% decrease in measures of quality of life from baseline to 6 months, and no differences were noted in quality-adjusted survival between the groups.
 

Pandemic ‘has accelerated interest’ in HAH

“Health systems around the world are exploring alternatives to hospital admission, such as hospital at home, to act as a buffer to the increasing demand for hospital care,” corresponding author Sasha Shepperd, MSc, DPhil, said in an interview. “This is partly due to a growing older population with increased health needs, but also an emphasis on providing health care that limits a decline in capacity for the older population. Inevitably, the COVID-19 pandemic has accelerated interest in hospital at home to create additional acute health care capacity.”

Dr. Sasha Shepperd

The take home-message supports the home service option. “If you can access a hospital-at-home service, consider this as an option for older people who would otherwise be admitted to hospital and are eligible for hospital at home care. However, is important that the provision of hospital at home is adequately resourced, and that families and caregivers are supported,” she said.

Barriers include delivering a different type of service that requires easy access to hospital services, including admission if required; a trained workforce to provide multidisciplinary care in a patient’s home; and ensuring a good fit with existing health and social care services,” Dr. Shepperd said.

Future research areas include the demands placed on caregivers from hospital-at-home services, and how the provision of hospital at home impacts hospital and community services, she added.

Findings support use of HAH

The data from the current study support the use of a hospital at home concept, especially in the geriatric age population, for acute health conditions that could be managed at home rather than acutely in a hospital-based environment,” Noel Deep, MD, emphasized in an interview.

Dr. Deep, who is a general internist in group practice in Antigo, Wisc., said he was not surprised by the study findings.

“I am a big proponent of the hospital at home approach to taking care of patients who can be safely and appropriately managed in the familiarity and comfort of their own home environment with help from physicians, nurses, and other home health care services,” he said. “It is a valuable option for appropriately screened and selected patients to be provided this approach to management of their acute health care situations.”

Primary care physicians should explore using HAH when faced with the decision of admitting an elderly individual to the hospital for management of an acute worsening of a chronic medical condition or a reversible acute illness, said Dr. Deep, who serves on the editorial advisory board of Internal Medicine News.

The current study reinforces previous studies and data showing the benefits of managing acute health problems of elderly individuals in their home environment. These benefits include “an opportunity to free up the emergency rooms and hospitals for providing care to those individuals who truly would be best served by being admitted to the hospital,” Dr. Deep explained. Home care for the elderly “would also lead to decreased utilization of the personal protective equipment and limit exposure of the vulnerable elderly individuals to the coronavirus. Primary care physicians should always explore this possibility of providing care to the patients in their homes if it is a viable option.

“While our practice environment [in the United States] is slightly different than that referenced in this article, many, if not almost all, of our primary care physicians provide care to the geriatric age population and provide assessment and management which would be comparable to this comprehensive geriatric assessment that is discussed in the article,” and many primary care physicians have seen similar results in outcomes that the study shows, said Dr. Deep. The available research and expert opinions are quite similar and agree upon the positive outcomes in terms of providing the CGAHAH approach.
 

Study is important but raises questions

The study is important because patient-centered, effective care should be the goal of any health system, William Golden, MD, of the University of Arkansas for Medical Sciences, Little Rock, said in an interview. 

Dr. Golden also noted that the study raised a number of questions. How each patient entered the treatment protocol was not clear. “Similarly, it is not clear whether admission criteria and resource costs in England cross to the United States experience.”

“Having close follow up of patients at home as opposed to an ‘observation status’ could be a nice innovation, but more details are needed to consider implementation in a specific community setting,” he emphasized.

As for the clinical value of the study for primary care, “primary care professionals should welcome well-staffed alternatives to inpatient care for select patient presentations,” said Dr. Golden, who is also a member of the editorial advisory board of Internal Medicine News.

The current study does not identify the conditions that were treated at home and the logistics of delivering such services, which limits comparison with what experts have seen in practice in terms of outcomes using the CGAHAH, he said. “Interested practitioners would benefit from literature detailing the staffing and decision support tools that form the core framework of this innovation.”
 

Limitations and strengths of study, according to authors

The study findings were limited by several factors including the calculation of CGAHAH based on service budgets, rather than from collecting information on the actual resources used; potential errors in patients’ estimation of their informal care; and lack of data on a differential impact of CGAHAH for underserved communities, the researchers noted.

However, the results were strengthened by the large study population and randomized design, and support the value of CGAHAH, which addresses the need for management of multiple long-term conditions and the potential decline in functional and cognitive ability in older adults, they said. Providing CGAHAH as an alternative to admission to hospital for older people, with a focus on multidimensional assessment, is one option that might reduce reliance on hospitalization and residential care and at a lower cost.

The study was supported by the National Institute for Health Research, and several coauthors received individual grants from the NIHR, with no other financial conflicts to disclose. Dr. Golden and Dr. Deep had no financial conflicts to disclose.

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Pneumonia in infancy predicts respiratory problems in early childhood

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Thu, 01/06/2022 - 13:39

 

Preschoolers who experienced community-acquired pneumonia in infancy were significantly more likely than were those with no history of pneumonia to develop chronic respiratory disorders, based on data from approximately 7,000 individuals.

“Lower respiratory tract infections (LRTI) during the first years of life cause injury to the rapidly developing lung at its most critical stage,” wrote Rotem Lapidot, MD, of Boston University, and colleagues. Previous research has linked pneumonia with subsequent chronic cough, bronchitis, and recurrent pneumonia in children, but data are needed to assess the impact of early community-acquired pneumonia (CAP) on respiratory health in otherwise healthy infants, the researchers said.

In a retrospective matched cohort study published in Respiratory Medicine , the researchers identified 1,343 infants who had CAP in the first 2 years of life, and 6,715 controls, using a large electronic health records dataset (Optum EHR dataset) for the period from Jan. 2011 through June 2018.

The primary outcomes were the development of any chronic respiratory disorders, reactive airway disease, and CAP hospitalizations between ages 2 and 5 years. Infants in the CAP group were otherwise healthy; those with congenital or other conditions that might predispose them to pneumonia were excluded. Baseline characteristics were similar between the CAP patients and controls.
 

Future risk

Overall, the rates per 100 patient-years for any chronic respiratory disorder were 11.6 for CAP patients versus 4.9 for controls (relative risk, 2.4). Rates for reactive airway disease and CAP hospitalization were 6.1 versus 1.9 per 100 patient-years (RR, 3.2) and 1.0 versus 0.2 per 100 patient-years (RR, 6.3) for the CAP patients and controls, respectively.

The distribution of CAP etiology of CAP in infants at the first hospitalization was 20% bacterial, 27% viral, and 53% unspecified. The relative rates of later respiratory illness were similar across etiologies of the initial hospitalization for CAP, which support the association between infant CAP and later respiratory disease, the researchers said.

Nearly all (97%) of the CAP patients had only one qualifying hospitalization for CAP before 2 years of age, and the mean age at the first hospitalization was 8.9 months. “Rates and relative rates of any chronic respiratory disorder, and our composite for reactive airway disease, increased with age at which the initial CAP hospitalization occurred,” and were highest for children hospitalized at close to 2 years of age, the researchers noted.
 

Persistent inflammation?

“Our findings add to the evolving hypothesis that persistent inflammation following pneumonia creates an increased risk for subsequent respiratory disease and exacerbations of underlying disease,” the researchers wrote.

The study findings were limited by several factors, including the potential for misclassification of some infants with and without underlying conditions, reliance on discharge information for etiology, and possible lack of generalizability to other populations, the researchers noted.

However, the results indicate an increased risk for respiratory illness in early childhood among infants with CAP, and support the need for greater attention to CAP prevention and for strategies to reduce inflammation after pneumonia, they said. “Further study is needed to confirm the long-term consequences of infant CAP and the underlying mechanisms that lead to such long-term sequelae,” they concluded.

Dr. Lapidot and several coauthors disclosed ties with Pfizer, the study sponsor.

A version of this article first appeared on Medscape.com.

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Preschoolers who experienced community-acquired pneumonia in infancy were significantly more likely than were those with no history of pneumonia to develop chronic respiratory disorders, based on data from approximately 7,000 individuals.

“Lower respiratory tract infections (LRTI) during the first years of life cause injury to the rapidly developing lung at its most critical stage,” wrote Rotem Lapidot, MD, of Boston University, and colleagues. Previous research has linked pneumonia with subsequent chronic cough, bronchitis, and recurrent pneumonia in children, but data are needed to assess the impact of early community-acquired pneumonia (CAP) on respiratory health in otherwise healthy infants, the researchers said.

In a retrospective matched cohort study published in Respiratory Medicine , the researchers identified 1,343 infants who had CAP in the first 2 years of life, and 6,715 controls, using a large electronic health records dataset (Optum EHR dataset) for the period from Jan. 2011 through June 2018.

The primary outcomes were the development of any chronic respiratory disorders, reactive airway disease, and CAP hospitalizations between ages 2 and 5 years. Infants in the CAP group were otherwise healthy; those with congenital or other conditions that might predispose them to pneumonia were excluded. Baseline characteristics were similar between the CAP patients and controls.
 

Future risk

Overall, the rates per 100 patient-years for any chronic respiratory disorder were 11.6 for CAP patients versus 4.9 for controls (relative risk, 2.4). Rates for reactive airway disease and CAP hospitalization were 6.1 versus 1.9 per 100 patient-years (RR, 3.2) and 1.0 versus 0.2 per 100 patient-years (RR, 6.3) for the CAP patients and controls, respectively.

The distribution of CAP etiology of CAP in infants at the first hospitalization was 20% bacterial, 27% viral, and 53% unspecified. The relative rates of later respiratory illness were similar across etiologies of the initial hospitalization for CAP, which support the association between infant CAP and later respiratory disease, the researchers said.

Nearly all (97%) of the CAP patients had only one qualifying hospitalization for CAP before 2 years of age, and the mean age at the first hospitalization was 8.9 months. “Rates and relative rates of any chronic respiratory disorder, and our composite for reactive airway disease, increased with age at which the initial CAP hospitalization occurred,” and were highest for children hospitalized at close to 2 years of age, the researchers noted.
 

Persistent inflammation?

“Our findings add to the evolving hypothesis that persistent inflammation following pneumonia creates an increased risk for subsequent respiratory disease and exacerbations of underlying disease,” the researchers wrote.

The study findings were limited by several factors, including the potential for misclassification of some infants with and without underlying conditions, reliance on discharge information for etiology, and possible lack of generalizability to other populations, the researchers noted.

However, the results indicate an increased risk for respiratory illness in early childhood among infants with CAP, and support the need for greater attention to CAP prevention and for strategies to reduce inflammation after pneumonia, they said. “Further study is needed to confirm the long-term consequences of infant CAP and the underlying mechanisms that lead to such long-term sequelae,” they concluded.

Dr. Lapidot and several coauthors disclosed ties with Pfizer, the study sponsor.

A version of this article first appeared on Medscape.com.

 

Preschoolers who experienced community-acquired pneumonia in infancy were significantly more likely than were those with no history of pneumonia to develop chronic respiratory disorders, based on data from approximately 7,000 individuals.

“Lower respiratory tract infections (LRTI) during the first years of life cause injury to the rapidly developing lung at its most critical stage,” wrote Rotem Lapidot, MD, of Boston University, and colleagues. Previous research has linked pneumonia with subsequent chronic cough, bronchitis, and recurrent pneumonia in children, but data are needed to assess the impact of early community-acquired pneumonia (CAP) on respiratory health in otherwise healthy infants, the researchers said.

In a retrospective matched cohort study published in Respiratory Medicine , the researchers identified 1,343 infants who had CAP in the first 2 years of life, and 6,715 controls, using a large electronic health records dataset (Optum EHR dataset) for the period from Jan. 2011 through June 2018.

The primary outcomes were the development of any chronic respiratory disorders, reactive airway disease, and CAP hospitalizations between ages 2 and 5 years. Infants in the CAP group were otherwise healthy; those with congenital or other conditions that might predispose them to pneumonia were excluded. Baseline characteristics were similar between the CAP patients and controls.
 

Future risk

Overall, the rates per 100 patient-years for any chronic respiratory disorder were 11.6 for CAP patients versus 4.9 for controls (relative risk, 2.4). Rates for reactive airway disease and CAP hospitalization were 6.1 versus 1.9 per 100 patient-years (RR, 3.2) and 1.0 versus 0.2 per 100 patient-years (RR, 6.3) for the CAP patients and controls, respectively.

The distribution of CAP etiology of CAP in infants at the first hospitalization was 20% bacterial, 27% viral, and 53% unspecified. The relative rates of later respiratory illness were similar across etiologies of the initial hospitalization for CAP, which support the association between infant CAP and later respiratory disease, the researchers said.

Nearly all (97%) of the CAP patients had only one qualifying hospitalization for CAP before 2 years of age, and the mean age at the first hospitalization was 8.9 months. “Rates and relative rates of any chronic respiratory disorder, and our composite for reactive airway disease, increased with age at which the initial CAP hospitalization occurred,” and were highest for children hospitalized at close to 2 years of age, the researchers noted.
 

Persistent inflammation?

“Our findings add to the evolving hypothesis that persistent inflammation following pneumonia creates an increased risk for subsequent respiratory disease and exacerbations of underlying disease,” the researchers wrote.

The study findings were limited by several factors, including the potential for misclassification of some infants with and without underlying conditions, reliance on discharge information for etiology, and possible lack of generalizability to other populations, the researchers noted.

However, the results indicate an increased risk for respiratory illness in early childhood among infants with CAP, and support the need for greater attention to CAP prevention and for strategies to reduce inflammation after pneumonia, they said. “Further study is needed to confirm the long-term consequences of infant CAP and the underlying mechanisms that lead to such long-term sequelae,” they concluded.

Dr. Lapidot and several coauthors disclosed ties with Pfizer, the study sponsor.

A version of this article first appeared on Medscape.com.

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MRI is key to diagnosing CTE in living patients?

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Thu, 12/15/2022 - 15:39

A distinct pattern of frontal-temporal atrophy discernible on magnetic resonance imaging (MRI) may flag chronic traumatic encephalopathy (CTE) in living patients, new research suggests.

“These new results offer some hope for clinicians who are really struggling to confidently diagnose or detect CTE during life,” said lead author Michael L. Alosco, PhD, associate professor of neurology, codirector of the Boston University Alzheimer’s Disease Research Center, and investigator at the Boston University CTE Center.

The findings were published online Dec. 7, 2021, in Alzheimer’s Research & Therapy.
 

A new way to diagnose?

CTE is a neurodegenerative disease associated with exposure to repetitive blows to the head, such as those sustained playing contact sports. Currently, the condition can only be reliably diagnosed at autopsy using neuropathological diagnostic criteria.

There are four pathological stages of CTE, ranging from mild to severe. Each progressive stage reflects mounting accumulation of hyperphosphorylated tau (p-tau).

The study included 55 male brain donors with confirmed CTE, all with a history of repetitive head injury. Most (n = 52) played football, but two played ice hockey and one had military and combat exposure. The analysis also included 31 men with normal cognition (NC). Of these, some were living and some were deceased.

The study sample was restricted to participants age 60 and older and to those who had an MRI obtained through a medical record request.

Most referrals for MRI in the CTE group were related to dementia or neurodegenerative disease (65%). In the NC group, MRI indications were mostly related to cerebrovascular causes (22.6%), memory complaints (16.1%), or vertigo (9.7%).

From MRIs, neuroradiologists visually rated patterns of shrinkage in the brain, microvascular disease, and presence of cavum septum pellucidum (CSP) – a large hole in the tissue separating ventricles of the brain.
 

More atrophy

Results showed that compared with the NC group, the CTE group had significantly greater atrophy in several brain regions, including the orbital-frontal cortex, dorsolateral frontal cortex, superior frontal cortex, anterior temporal lobes, and medial temporal lobe.

The dorsolateral frontal cortex showed the largest group difference (estimated marginal mean difference, 1.31; 95% confidence interval, .42-2.19; false discovery rate-adjusted P = .01).

Previous research has shown early p-tau involvement in this area among CTE patients. Although the hippocampus is also affected in CTE, this occurs later in the disease course, the investigators noted.

The unique pattern, type, and distribution of p-tau pathology in CTE is different from Alzheimer’s disease. CTE is also distinct from Alzheimer’s disease in that there is no accumulation of beta-amyloid plaque.

The new results add to “converging evidence” for frontotemporal and medial temporal lobe atrophy in CTE “that might be able to be visualized on MRI,” the investigators noted.

Almost two-thirds of the CTE group had an additional neurodegenerative disease. Furthermore, the effect sizes remained similar in analyses that excluded CTE donors with frontotemporal lobar degeneration or Alzheimer’s disease.

“This suggests to us that these other diseases were not accounting for the atrophy,” Dr. Alosco said.

Individuals with CTE were 6.7 times more likely to have a CSP versus those with NC (odds ratio, 6.7; 95% CI, 1.5-50.1; P = .049).

Although previous research suggested an association between CSP and repetitive concussion, CSP is also frequently found in the general adult population. However, when combined with data on frontal lobe shrinkage, it may be a supportive differential diagnostic feature for CTE, Dr. Alosco said.
 

 

 

An important first step

The investigators also examined ventricle size. The lateral ventricles in the CTE group were significantly larger (mean difference, 1.72; 95% CI, .62-2.82; P = .01), as was the third ventricle (mean difference, .80; 95% CI, .26-1.35; P = .01).

When neuropathologists rated tau severity and atrophy at autopsy, they found that more severe p-tau pathology was associated with greater atrophy among those with CTE (beta = .68; P < .01).

Dr. Alosco called the finding “exciting,” noting that it suggests “this tau is a precipitant for neurodegeneration.”

He noted that, although some researchers have used positron emission tomography (PET) tau tracers to uncover a CTE pattern, MRI is relatively inexpensive and routinely used as part of dementia assessment.

While the new study is “an important first step” in using MRI to diagnose CTE, larger sample sizes are needed, Dr. Alosco said. “We also need to look at other disease groups and really nail down the difference with CTE in terms of patterns” (vs. Alzheimer’s disease and vs. frontotemporal lobar degeneration), he added.

“Once those differences are cleared, we will be ready to be more confident when we interpret these images.”.
 

‘Not unexpected’

Commenting on the research, neurologist and concussion expert Francis X. Conidi, DO, director, Florida Center for Headache and Sports Neurology, Port St. Lucie, said that, although the study was “well thought out and interesting,” the results were “not completely unexpected.”

Frontal and anterior temporal lobe atrophy and prominent third ventricles are very common in patients with traumatic brain injury (TBI), which is “a prerequisite to develop CTE,” said Dr. Conidi, who was not involved with the research.

The current study’s findings mirror observations found in a National Football League cohort he and his colleagues are following – and in his patients with TBI in general.

Dr. Conidi noted that there is a “significant subjective component” to the study results because they relied on the opinion of neuroradiologists. He is not convinced MRI findings of frontotemporal and medial temporal lobe atrophy necessarily represent CTE and not TBI. In fact, he noted that patients with TBI have a significantly greater chance of not developing a neurodegenerative disorder.

Dr. Conidi added that he doesn’t think MRI will ever be the gold standard for diagnosing or even assessing risk of developing CTE. “That lies in tau PET imaging,” he said.
 

Overstated conclusion?

Also commenting on the research findings, Kristen Dams-O’Connor, PhD, professor, vice chair of research, and director, Brain Injury Research Center, Department of Rehabilitation Medicine, Icahn School of Medicine at Mount Sinai in New York, said the sensitivity analyses, particularly those designed to clarify contributions of Alzheimer’s disease and other neuropathological contributions to associations between p-tau and atrophy, “increase our confidence” in the findings.

“What’s exciting about this paper is that it provides very preliminary support for adding another tool to our arsenal as we try to establish a constellation of in vivo diagnostic markers that, together, will help us rule in a post-traumatic neurodegenerative process and rule out other brain diseases.”

A possible study limitation is that the MRI scans were from low-field strength magnets, although that makes the study more “ecologically valid”, said Dr. Dams-O’Connor. “Many clinical scanners are built around a 1.5T magnet, so what the researchers see in this study is what a radiologist may see in the clinic.”

The conclusion that frontal-temporal atrophy is an MRI marker of CTE is “an overstatement” as this pattern of atrophy is not specific to CTE, said Dr. Dams-O’Connor. “The association of p-tau with atrophy is unsurprising and doesn’t bring us much closer to understanding how, or whether, the patterns of p-tau accumulation observed in CTE contribute to the clinical expression of symptoms.”

Dr. Alosco and Dr. Conidi report no relevant financial relationships. Disclosures for the other study authors are listed in the original journal article. The study was funded by grants from the National Institute on Aging, the National Institute on Neurological Disorders and Stroke, National Institute of Aging Boston University AD Center, Department of Veterans Affairs Merit Award, the Nick and Lynn Buoniconti Foundation, and BU-CTSI.

 

 

A version of this article first appeared on Medscape.com.

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A distinct pattern of frontal-temporal atrophy discernible on magnetic resonance imaging (MRI) may flag chronic traumatic encephalopathy (CTE) in living patients, new research suggests.

“These new results offer some hope for clinicians who are really struggling to confidently diagnose or detect CTE during life,” said lead author Michael L. Alosco, PhD, associate professor of neurology, codirector of the Boston University Alzheimer’s Disease Research Center, and investigator at the Boston University CTE Center.

The findings were published online Dec. 7, 2021, in Alzheimer’s Research & Therapy.
 

A new way to diagnose?

CTE is a neurodegenerative disease associated with exposure to repetitive blows to the head, such as those sustained playing contact sports. Currently, the condition can only be reliably diagnosed at autopsy using neuropathological diagnostic criteria.

There are four pathological stages of CTE, ranging from mild to severe. Each progressive stage reflects mounting accumulation of hyperphosphorylated tau (p-tau).

The study included 55 male brain donors with confirmed CTE, all with a history of repetitive head injury. Most (n = 52) played football, but two played ice hockey and one had military and combat exposure. The analysis also included 31 men with normal cognition (NC). Of these, some were living and some were deceased.

The study sample was restricted to participants age 60 and older and to those who had an MRI obtained through a medical record request.

Most referrals for MRI in the CTE group were related to dementia or neurodegenerative disease (65%). In the NC group, MRI indications were mostly related to cerebrovascular causes (22.6%), memory complaints (16.1%), or vertigo (9.7%).

From MRIs, neuroradiologists visually rated patterns of shrinkage in the brain, microvascular disease, and presence of cavum septum pellucidum (CSP) – a large hole in the tissue separating ventricles of the brain.
 

More atrophy

Results showed that compared with the NC group, the CTE group had significantly greater atrophy in several brain regions, including the orbital-frontal cortex, dorsolateral frontal cortex, superior frontal cortex, anterior temporal lobes, and medial temporal lobe.

The dorsolateral frontal cortex showed the largest group difference (estimated marginal mean difference, 1.31; 95% confidence interval, .42-2.19; false discovery rate-adjusted P = .01).

Previous research has shown early p-tau involvement in this area among CTE patients. Although the hippocampus is also affected in CTE, this occurs later in the disease course, the investigators noted.

The unique pattern, type, and distribution of p-tau pathology in CTE is different from Alzheimer’s disease. CTE is also distinct from Alzheimer’s disease in that there is no accumulation of beta-amyloid plaque.

The new results add to “converging evidence” for frontotemporal and medial temporal lobe atrophy in CTE “that might be able to be visualized on MRI,” the investigators noted.

Almost two-thirds of the CTE group had an additional neurodegenerative disease. Furthermore, the effect sizes remained similar in analyses that excluded CTE donors with frontotemporal lobar degeneration or Alzheimer’s disease.

“This suggests to us that these other diseases were not accounting for the atrophy,” Dr. Alosco said.

Individuals with CTE were 6.7 times more likely to have a CSP versus those with NC (odds ratio, 6.7; 95% CI, 1.5-50.1; P = .049).

Although previous research suggested an association between CSP and repetitive concussion, CSP is also frequently found in the general adult population. However, when combined with data on frontal lobe shrinkage, it may be a supportive differential diagnostic feature for CTE, Dr. Alosco said.
 

 

 

An important first step

The investigators also examined ventricle size. The lateral ventricles in the CTE group were significantly larger (mean difference, 1.72; 95% CI, .62-2.82; P = .01), as was the third ventricle (mean difference, .80; 95% CI, .26-1.35; P = .01).

When neuropathologists rated tau severity and atrophy at autopsy, they found that more severe p-tau pathology was associated with greater atrophy among those with CTE (beta = .68; P < .01).

Dr. Alosco called the finding “exciting,” noting that it suggests “this tau is a precipitant for neurodegeneration.”

He noted that, although some researchers have used positron emission tomography (PET) tau tracers to uncover a CTE pattern, MRI is relatively inexpensive and routinely used as part of dementia assessment.

While the new study is “an important first step” in using MRI to diagnose CTE, larger sample sizes are needed, Dr. Alosco said. “We also need to look at other disease groups and really nail down the difference with CTE in terms of patterns” (vs. Alzheimer’s disease and vs. frontotemporal lobar degeneration), he added.

“Once those differences are cleared, we will be ready to be more confident when we interpret these images.”.
 

‘Not unexpected’

Commenting on the research, neurologist and concussion expert Francis X. Conidi, DO, director, Florida Center for Headache and Sports Neurology, Port St. Lucie, said that, although the study was “well thought out and interesting,” the results were “not completely unexpected.”

Frontal and anterior temporal lobe atrophy and prominent third ventricles are very common in patients with traumatic brain injury (TBI), which is “a prerequisite to develop CTE,” said Dr. Conidi, who was not involved with the research.

The current study’s findings mirror observations found in a National Football League cohort he and his colleagues are following – and in his patients with TBI in general.

Dr. Conidi noted that there is a “significant subjective component” to the study results because they relied on the opinion of neuroradiologists. He is not convinced MRI findings of frontotemporal and medial temporal lobe atrophy necessarily represent CTE and not TBI. In fact, he noted that patients with TBI have a significantly greater chance of not developing a neurodegenerative disorder.

Dr. Conidi added that he doesn’t think MRI will ever be the gold standard for diagnosing or even assessing risk of developing CTE. “That lies in tau PET imaging,” he said.
 

Overstated conclusion?

Also commenting on the research findings, Kristen Dams-O’Connor, PhD, professor, vice chair of research, and director, Brain Injury Research Center, Department of Rehabilitation Medicine, Icahn School of Medicine at Mount Sinai in New York, said the sensitivity analyses, particularly those designed to clarify contributions of Alzheimer’s disease and other neuropathological contributions to associations between p-tau and atrophy, “increase our confidence” in the findings.

“What’s exciting about this paper is that it provides very preliminary support for adding another tool to our arsenal as we try to establish a constellation of in vivo diagnostic markers that, together, will help us rule in a post-traumatic neurodegenerative process and rule out other brain diseases.”

A possible study limitation is that the MRI scans were from low-field strength magnets, although that makes the study more “ecologically valid”, said Dr. Dams-O’Connor. “Many clinical scanners are built around a 1.5T magnet, so what the researchers see in this study is what a radiologist may see in the clinic.”

The conclusion that frontal-temporal atrophy is an MRI marker of CTE is “an overstatement” as this pattern of atrophy is not specific to CTE, said Dr. Dams-O’Connor. “The association of p-tau with atrophy is unsurprising and doesn’t bring us much closer to understanding how, or whether, the patterns of p-tau accumulation observed in CTE contribute to the clinical expression of symptoms.”

Dr. Alosco and Dr. Conidi report no relevant financial relationships. Disclosures for the other study authors are listed in the original journal article. The study was funded by grants from the National Institute on Aging, the National Institute on Neurological Disorders and Stroke, National Institute of Aging Boston University AD Center, Department of Veterans Affairs Merit Award, the Nick and Lynn Buoniconti Foundation, and BU-CTSI.

 

 

A version of this article first appeared on Medscape.com.

A distinct pattern of frontal-temporal atrophy discernible on magnetic resonance imaging (MRI) may flag chronic traumatic encephalopathy (CTE) in living patients, new research suggests.

“These new results offer some hope for clinicians who are really struggling to confidently diagnose or detect CTE during life,” said lead author Michael L. Alosco, PhD, associate professor of neurology, codirector of the Boston University Alzheimer’s Disease Research Center, and investigator at the Boston University CTE Center.

The findings were published online Dec. 7, 2021, in Alzheimer’s Research & Therapy.
 

A new way to diagnose?

CTE is a neurodegenerative disease associated with exposure to repetitive blows to the head, such as those sustained playing contact sports. Currently, the condition can only be reliably diagnosed at autopsy using neuropathological diagnostic criteria.

There are four pathological stages of CTE, ranging from mild to severe. Each progressive stage reflects mounting accumulation of hyperphosphorylated tau (p-tau).

The study included 55 male brain donors with confirmed CTE, all with a history of repetitive head injury. Most (n = 52) played football, but two played ice hockey and one had military and combat exposure. The analysis also included 31 men with normal cognition (NC). Of these, some were living and some were deceased.

The study sample was restricted to participants age 60 and older and to those who had an MRI obtained through a medical record request.

Most referrals for MRI in the CTE group were related to dementia or neurodegenerative disease (65%). In the NC group, MRI indications were mostly related to cerebrovascular causes (22.6%), memory complaints (16.1%), or vertigo (9.7%).

From MRIs, neuroradiologists visually rated patterns of shrinkage in the brain, microvascular disease, and presence of cavum septum pellucidum (CSP) – a large hole in the tissue separating ventricles of the brain.
 

More atrophy

Results showed that compared with the NC group, the CTE group had significantly greater atrophy in several brain regions, including the orbital-frontal cortex, dorsolateral frontal cortex, superior frontal cortex, anterior temporal lobes, and medial temporal lobe.

The dorsolateral frontal cortex showed the largest group difference (estimated marginal mean difference, 1.31; 95% confidence interval, .42-2.19; false discovery rate-adjusted P = .01).

Previous research has shown early p-tau involvement in this area among CTE patients. Although the hippocampus is also affected in CTE, this occurs later in the disease course, the investigators noted.

The unique pattern, type, and distribution of p-tau pathology in CTE is different from Alzheimer’s disease. CTE is also distinct from Alzheimer’s disease in that there is no accumulation of beta-amyloid plaque.

The new results add to “converging evidence” for frontotemporal and medial temporal lobe atrophy in CTE “that might be able to be visualized on MRI,” the investigators noted.

Almost two-thirds of the CTE group had an additional neurodegenerative disease. Furthermore, the effect sizes remained similar in analyses that excluded CTE donors with frontotemporal lobar degeneration or Alzheimer’s disease.

“This suggests to us that these other diseases were not accounting for the atrophy,” Dr. Alosco said.

Individuals with CTE were 6.7 times more likely to have a CSP versus those with NC (odds ratio, 6.7; 95% CI, 1.5-50.1; P = .049).

Although previous research suggested an association between CSP and repetitive concussion, CSP is also frequently found in the general adult population. However, when combined with data on frontal lobe shrinkage, it may be a supportive differential diagnostic feature for CTE, Dr. Alosco said.
 

 

 

An important first step

The investigators also examined ventricle size. The lateral ventricles in the CTE group were significantly larger (mean difference, 1.72; 95% CI, .62-2.82; P = .01), as was the third ventricle (mean difference, .80; 95% CI, .26-1.35; P = .01).

When neuropathologists rated tau severity and atrophy at autopsy, they found that more severe p-tau pathology was associated with greater atrophy among those with CTE (beta = .68; P < .01).

Dr. Alosco called the finding “exciting,” noting that it suggests “this tau is a precipitant for neurodegeneration.”

He noted that, although some researchers have used positron emission tomography (PET) tau tracers to uncover a CTE pattern, MRI is relatively inexpensive and routinely used as part of dementia assessment.

While the new study is “an important first step” in using MRI to diagnose CTE, larger sample sizes are needed, Dr. Alosco said. “We also need to look at other disease groups and really nail down the difference with CTE in terms of patterns” (vs. Alzheimer’s disease and vs. frontotemporal lobar degeneration), he added.

“Once those differences are cleared, we will be ready to be more confident when we interpret these images.”.
 

‘Not unexpected’

Commenting on the research, neurologist and concussion expert Francis X. Conidi, DO, director, Florida Center for Headache and Sports Neurology, Port St. Lucie, said that, although the study was “well thought out and interesting,” the results were “not completely unexpected.”

Frontal and anterior temporal lobe atrophy and prominent third ventricles are very common in patients with traumatic brain injury (TBI), which is “a prerequisite to develop CTE,” said Dr. Conidi, who was not involved with the research.

The current study’s findings mirror observations found in a National Football League cohort he and his colleagues are following – and in his patients with TBI in general.

Dr. Conidi noted that there is a “significant subjective component” to the study results because they relied on the opinion of neuroradiologists. He is not convinced MRI findings of frontotemporal and medial temporal lobe atrophy necessarily represent CTE and not TBI. In fact, he noted that patients with TBI have a significantly greater chance of not developing a neurodegenerative disorder.

Dr. Conidi added that he doesn’t think MRI will ever be the gold standard for diagnosing or even assessing risk of developing CTE. “That lies in tau PET imaging,” he said.
 

Overstated conclusion?

Also commenting on the research findings, Kristen Dams-O’Connor, PhD, professor, vice chair of research, and director, Brain Injury Research Center, Department of Rehabilitation Medicine, Icahn School of Medicine at Mount Sinai in New York, said the sensitivity analyses, particularly those designed to clarify contributions of Alzheimer’s disease and other neuropathological contributions to associations between p-tau and atrophy, “increase our confidence” in the findings.

“What’s exciting about this paper is that it provides very preliminary support for adding another tool to our arsenal as we try to establish a constellation of in vivo diagnostic markers that, together, will help us rule in a post-traumatic neurodegenerative process and rule out other brain diseases.”

A possible study limitation is that the MRI scans were from low-field strength magnets, although that makes the study more “ecologically valid”, said Dr. Dams-O’Connor. “Many clinical scanners are built around a 1.5T magnet, so what the researchers see in this study is what a radiologist may see in the clinic.”

The conclusion that frontal-temporal atrophy is an MRI marker of CTE is “an overstatement” as this pattern of atrophy is not specific to CTE, said Dr. Dams-O’Connor. “The association of p-tau with atrophy is unsurprising and doesn’t bring us much closer to understanding how, or whether, the patterns of p-tau accumulation observed in CTE contribute to the clinical expression of symptoms.”

Dr. Alosco and Dr. Conidi report no relevant financial relationships. Disclosures for the other study authors are listed in the original journal article. The study was funded by grants from the National Institute on Aging, the National Institute on Neurological Disorders and Stroke, National Institute of Aging Boston University AD Center, Department of Veterans Affairs Merit Award, the Nick and Lynn Buoniconti Foundation, and BU-CTSI.

 

 

A version of this article first appeared on Medscape.com.

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