Adolescent Medicine

AUSTIN, TEX. – Adolescents with moderate to severe atopic dermatitis who used dupilumab experienced significant improvements in signs and symptoms of the condition, with minimal safety concerns, according to results of a phase 3 study.

Doug Brunk/MDedge News

“Dupilumab works as effectively in adolescents as in adults,” Randy Prescilla, MD, one of the study authors, said in an interview at the annual meeting of the Society for Pediatric Dermatology. “It gives us promise that we could go into other age groups with the same optimism. We are enrolling patients in even younger age groups.”

The double-blind, placebo-controlled study analyzed the efficacy and safety of dupilumab monotherapy in patients between the ages of 12 and 17 years with moderate to severe atopic dermatitis (AD) inadequately controlled with topical therapies. In the United States, dupilumab is approved for those aged 12 years and older with moderate to severe disease inadequately controlled by topical prescription treatments or when those therapies are not advisable.

For the 16-week study, Dr. Prescilla, global medical affairs director of pediatric dermatology for Sanofi Genzyme, and colleagues randomized 251 patients to one of three groups: dupilumab every 2 weeks (200 mg if baseline weight was less than 60 kg; 300 mg if that weight was 60 kg or more); 300 mg dupilumab every 4 weeks; or placebo every 2 weeks.

At week 16, a significantly higher proportion of patients in the two drug treatment groups had Investigator’s Global Assessment scores of 0/1, compared with those in the placebo group (24.4%, 17.9%, and 2.4%) as well as a significantly higher percentage of patients who achieved at least a 75% improvement in the Eczema Area and Severity Index (EASI-75) score (41.5%, 38.1%, and 8.2%).

In addition, patients in the two drug treatment groups experienced improved percent change in least square-means on the EASI from baseline to week 16, compared with those in the placebo group (–65.9%, –64.8%, and –23.6%), the Peak Pruritus Numerical Rating Scale (–47.9%, –45.5%, and –19.0%), body surface area affected by AD (–30.1%, –33.4%, and –11.7%), and in the SCORing AD clinical tool (P less than .001 for all comparisons).


Between baseline and week 16, scores on the Children’s Dermatology Life Quality Index and Patient-Oriented Eczema Measure improved significantly in the two dupilumab groups, compared with the placebo group. The rate of skin infection was higher in the placebo group (20%), compared with 11% in the group that received dupilumab every 2 weeks and 13.3% in the group receiving the drug every 4 weeks.

Conjunctivitis occurred more frequently with dupilumab treatment (9.8% in the every-2-weeks dupilumab group, 10.8% in the every-4-weeks dupilumab group, and 4.7% in the placebo group) as did injection site reactions (8.5%, 6.0%, and 3.5%). Two adverse events, one of which was serious, occurred in the placebo group.

Dr. Prescilla acknowledged certain limitations of the study, including its small sample size and the fact that it was limited to 16 weeks. “However, smaller sample size and duration are typical for this type of study and in line with the study design of the SOLO 1 and SOLO 2 studies in adults,” he said.

On Aug. 6, the European Commission extended the marketing authorization for dupilumab in the European Union to include adolescents 12-17 years of age with moderate to severe atopic dermatitis who are candidates for systemic therapy. On the same day, Sanofi Genzyme and Regeneron announced positive topline results in a phase 3 trial in children aged 6-11 years with severe AD.

The study’s principal investigator was Amy S. Paller, MD. The study was funded by Sanofi Genzyme and Regeneron. Dr. Prescilla is an employee of Sanofi Genzyme.

[email protected]

AUSTIN, TEX. – Adolescents with moderate to severe atopic dermatitis who used dupilumab experienced significant improvements in signs and symptoms of the condition, with minimal safety concerns, according to results of a phase 3 study.

Doug Brunk/MDedge News

“Dupilumab works as effectively in adolescents as in adults,” Randy Prescilla, MD, one of the study authors, said in an interview at the annual meeting of the Society for Pediatric Dermatology. “It gives us promise that we could go into other age groups with the same optimism. We are enrolling patients in even younger age groups.”

The double-blind, placebo-controlled study analyzed the efficacy and safety of dupilumab monotherapy in patients between the ages of 12 and 17 years with moderate to severe atopic dermatitis (AD) inadequately controlled with topical therapies. In the United States, dupilumab is approved for those aged 12 years and older with moderate to severe disease inadequately controlled by topical prescription treatments or when those therapies are not advisable.

For the 16-week study, Dr. Prescilla, global medical affairs director of pediatric dermatology for Sanofi Genzyme, and colleagues randomized 251 patients to one of three groups: dupilumab every 2 weeks (200 mg if baseline weight was less than 60 kg; 300 mg if that weight was 60 kg or more); 300 mg dupilumab every 4 weeks; or placebo every 2 weeks.

At week 16, a significantly higher proportion of patients in the two drug treatment groups had Investigator’s Global Assessment scores of 0/1, compared with those in the placebo group (24.4%, 17.9%, and 2.4%) as well as a significantly higher percentage of patients who achieved at least a 75% improvement in the Eczema Area and Severity Index (EASI-75) score (41.5%, 38.1%, and 8.2%).

In addition, patients in the two drug treatment groups experienced improved percent change in least square-means on the EASI from baseline to week 16, compared with those in the placebo group (–65.9%, –64.8%, and –23.6%), the Peak Pruritus Numerical Rating Scale (–47.9%, –45.5%, and –19.0%), body surface area affected by AD (–30.1%, –33.4%, and –11.7%), and in the SCORing AD clinical tool (P less than .001 for all comparisons).


Between baseline and week 16, scores on the Children’s Dermatology Life Quality Index and Patient-Oriented Eczema Measure improved significantly in the two dupilumab groups, compared with the placebo group. The rate of skin infection was higher in the placebo group (20%), compared with 11% in the group that received dupilumab every 2 weeks and 13.3% in the group receiving the drug every 4 weeks.

Conjunctivitis occurred more frequently with dupilumab treatment (9.8% in the every-2-weeks dupilumab group, 10.8% in the every-4-weeks dupilumab group, and 4.7% in the placebo group) as did injection site reactions (8.5%, 6.0%, and 3.5%). Two adverse events, one of which was serious, occurred in the placebo group.

Dr. Prescilla acknowledged certain limitations of the study, including its small sample size and the fact that it was limited to 16 weeks. “However, smaller sample size and duration are typical for this type of study and in line with the study design of the SOLO 1 and SOLO 2 studies in adults,” he said.

On Aug. 6, the European Commission extended the marketing authorization for dupilumab in the European Union to include adolescents 12-17 years of age with moderate to severe atopic dermatitis who are candidates for systemic therapy. On the same day, Sanofi Genzyme and Regeneron announced positive topline results in a phase 3 trial in children aged 6-11 years with severe AD.

The study’s principal investigator was Amy S. Paller, MD. The study was funded by Sanofi Genzyme and Regeneron. Dr. Prescilla is an employee of Sanofi Genzyme.

[email protected]

AUSTIN, TEX. – Adolescents with moderate to severe atopic dermatitis who used dupilumab experienced significant improvements in signs and symptoms of the condition, with minimal safety concerns, according to results of a phase 3 study.

Doug Brunk/MDedge News

“Dupilumab works as effectively in adolescents as in adults,” Randy Prescilla, MD, one of the study authors, said in an interview at the annual meeting of the Society for Pediatric Dermatology. “It gives us promise that we could go into other age groups with the same optimism. We are enrolling patients in even younger age groups.”

The double-blind, placebo-controlled study analyzed the efficacy and safety of dupilumab monotherapy in patients between the ages of 12 and 17 years with moderate to severe atopic dermatitis (AD) inadequately controlled with topical therapies. In the United States, dupilumab is approved for those aged 12 years and older with moderate to severe disease inadequately controlled by topical prescription treatments or when those therapies are not advisable.

For the 16-week study, Dr. Prescilla, global medical affairs director of pediatric dermatology for Sanofi Genzyme, and colleagues randomized 251 patients to one of three groups: dupilumab every 2 weeks (200 mg if baseline weight was less than 60 kg; 300 mg if that weight was 60 kg or more); 300 mg dupilumab every 4 weeks; or placebo every 2 weeks.

At week 16, a significantly higher proportion of patients in the two drug treatment groups had Investigator’s Global Assessment scores of 0/1, compared with those in the placebo group (24.4%, 17.9%, and 2.4%) as well as a significantly higher percentage of patients who achieved at least a 75% improvement in the Eczema Area and Severity Index (EASI-75) score (41.5%, 38.1%, and 8.2%).

In addition, patients in the two drug treatment groups experienced improved percent change in least square-means on the EASI from baseline to week 16, compared with those in the placebo group (–65.9%, –64.8%, and –23.6%), the Peak Pruritus Numerical Rating Scale (–47.9%, –45.5%, and –19.0%), body surface area affected by AD (–30.1%, –33.4%, and –11.7%), and in the SCORing AD clinical tool (P less than .001 for all comparisons).


Between baseline and week 16, scores on the Children’s Dermatology Life Quality Index and Patient-Oriented Eczema Measure improved significantly in the two dupilumab groups, compared with the placebo group. The rate of skin infection was higher in the placebo group (20%), compared with 11% in the group that received dupilumab every 2 weeks and 13.3% in the group receiving the drug every 4 weeks.

Conjunctivitis occurred more frequently with dupilumab treatment (9.8% in the every-2-weeks dupilumab group, 10.8% in the every-4-weeks dupilumab group, and 4.7% in the placebo group) as did injection site reactions (8.5%, 6.0%, and 3.5%). Two adverse events, one of which was serious, occurred in the placebo group.

Dr. Prescilla acknowledged certain limitations of the study, including its small sample size and the fact that it was limited to 16 weeks. “However, smaller sample size and duration are typical for this type of study and in line with the study design of the SOLO 1 and SOLO 2 studies in adults,” he said.

On Aug. 6, the European Commission extended the marketing authorization for dupilumab in the European Union to include adolescents 12-17 years of age with moderate to severe atopic dermatitis who are candidates for systemic therapy. On the same day, Sanofi Genzyme and Regeneron announced positive topline results in a phase 3 trial in children aged 6-11 years with severe AD.

The study’s principal investigator was Amy S. Paller, MD. The study was funded by Sanofi Genzyme and Regeneron. Dr. Prescilla is an employee of Sanofi Genzyme.

[email protected]

Cryopreserving semen is a feasible option for preserving the fertility of adolescents and young adults who were assigned male at birth and are beginning or have already begun gender-affirming treatment as transgender women, according to results of a small retrospective cohort study.

The lack of data on this topic, however, makes it difficult to determine how long an individual must be off gender-affirming therapy before spermatogenesis resumes, if it resumes, and what the long-term effects of gender-affirming therapy are.

“This information is critical to address as part of a multidisciplinary fertility discussion with youth and their guardians so that an informed decision can be made regarding fertility preservation use,” wrote Emily P. Barnard, DO, of UPMC Magee-Womens Hospital in Pittsburgh and her associates.

The researchers retrospectively collected data on transgender patients who sought fertility preservation between 2015 and 2018.

The 11 white transgender women (sex assigned male at birth) who followed up on adolescent medicine or pediatric endocrinology referrals for fertility preservation received their consultations between ages 16 and 24, with 19 years having been the median age at which they occurred. Gender dysphoria onset happened at a median age of 12 for the patients, who were evaluated for it at a median age of 17.

All but one patient submitted at least one semen sample, and eight ultimately cryopreserved their semen.

The eight samples from gender-affirming therapy–naive patients had abnormal morphology, with the median morphology having been 6% versus the normal range of greater than 13.0%. Otherwise, the samples collected were normal, but the authors noted that established semen analysis parameters don’t exist for adolescents and young adults.

All eight patients who had their semen cryopreserved, began gonadotropin-releasing hormone (GnRH) agonist therapy after cryopreservation, and four of those patients concurrently began taking estradiol.

One patient had already been taking intramuscular leuprolide acetate every 6 months and discontinued it to attempt fertility preservation. Spermatogenesis returned after 5 months of azoospermia, albeit with abnormal morphology (9%).

Another patient had been taking spironolactone and estradiol for 26 months before ceasing therapy to attempt fertility preservation. She remained azoospermic 4 months after stopping therapy and then moved forward with an orchiectomy.

“For many transgender patients, the potential need to discontinue GnRH agonist or gender-affirming therapy to allow for resumption of spermatogenesis may be a significant barrier to pursuing fertility preservation because cessation of therapy may result in exacerbation of gender dysphoria and progression of undesired male secondary sex characteristics,” the researchers wrote. “For individuals for whom this risk is not acceptable or if azoospermia is noted on semen analysis, there are several alternate options, including electroejaculation, testicular sperm extraction, and testicular tissue cryopreservation,” they continued. Electroejaculation with a transrectal probe is an option particularly for those who cannot masturbate or feel uncomfortable doing so, the authors explained.

For those who have not previously received gender-affirming therapy, the fertility preservation “process can be completed quickly, with collections occurring every 2 to 3 days to preserve several samples before initiating GnRH agonist or gender-affirming therapy,” they concluded.

SOURCE: Barnard EP et al. Pediatrics. 2019 Aug 5. doi: 10.1542/peds.2018-3943.

Cryopreserving semen is a feasible option for preserving the fertility of adolescents and young adults who were assigned male at birth and are beginning or have already begun gender-affirming treatment as transgender women, according to results of a small retrospective cohort study.

The lack of data on this topic, however, makes it difficult to determine how long an individual must be off gender-affirming therapy before spermatogenesis resumes, if it resumes, and what the long-term effects of gender-affirming therapy are.

“This information is critical to address as part of a multidisciplinary fertility discussion with youth and their guardians so that an informed decision can be made regarding fertility preservation use,” wrote Emily P. Barnard, DO, of UPMC Magee-Womens Hospital in Pittsburgh and her associates.

The researchers retrospectively collected data on transgender patients who sought fertility preservation between 2015 and 2018.

The 11 white transgender women (sex assigned male at birth) who followed up on adolescent medicine or pediatric endocrinology referrals for fertility preservation received their consultations between ages 16 and 24, with 19 years having been the median age at which they occurred. Gender dysphoria onset happened at a median age of 12 for the patients, who were evaluated for it at a median age of 17.

All but one patient submitted at least one semen sample, and eight ultimately cryopreserved their semen.

The eight samples from gender-affirming therapy–naive patients had abnormal morphology, with the median morphology having been 6% versus the normal range of greater than 13.0%. Otherwise, the samples collected were normal, but the authors noted that established semen analysis parameters don’t exist for adolescents and young adults.

All eight patients who had their semen cryopreserved, began gonadotropin-releasing hormone (GnRH) agonist therapy after cryopreservation, and four of those patients concurrently began taking estradiol.

One patient had already been taking intramuscular leuprolide acetate every 6 months and discontinued it to attempt fertility preservation. Spermatogenesis returned after 5 months of azoospermia, albeit with abnormal morphology (9%).

Another patient had been taking spironolactone and estradiol for 26 months before ceasing therapy to attempt fertility preservation. She remained azoospermic 4 months after stopping therapy and then moved forward with an orchiectomy.

“For many transgender patients, the potential need to discontinue GnRH agonist or gender-affirming therapy to allow for resumption of spermatogenesis may be a significant barrier to pursuing fertility preservation because cessation of therapy may result in exacerbation of gender dysphoria and progression of undesired male secondary sex characteristics,” the researchers wrote. “For individuals for whom this risk is not acceptable or if azoospermia is noted on semen analysis, there are several alternate options, including electroejaculation, testicular sperm extraction, and testicular tissue cryopreservation,” they continued. Electroejaculation with a transrectal probe is an option particularly for those who cannot masturbate or feel uncomfortable doing so, the authors explained.

For those who have not previously received gender-affirming therapy, the fertility preservation “process can be completed quickly, with collections occurring every 2 to 3 days to preserve several samples before initiating GnRH agonist or gender-affirming therapy,” they concluded.

SOURCE: Barnard EP et al. Pediatrics. 2019 Aug 5. doi: 10.1542/peds.2018-3943.

Cryopreserving semen is a feasible option for preserving the fertility of adolescents and young adults who were assigned male at birth and are beginning or have already begun gender-affirming treatment as transgender women, according to results of a small retrospective cohort study.

The lack of data on this topic, however, makes it difficult to determine how long an individual must be off gender-affirming therapy before spermatogenesis resumes, if it resumes, and what the long-term effects of gender-affirming therapy are.

“This information is critical to address as part of a multidisciplinary fertility discussion with youth and their guardians so that an informed decision can be made regarding fertility preservation use,” wrote Emily P. Barnard, DO, of UPMC Magee-Womens Hospital in Pittsburgh and her associates.

The researchers retrospectively collected data on transgender patients who sought fertility preservation between 2015 and 2018.

The 11 white transgender women (sex assigned male at birth) who followed up on adolescent medicine or pediatric endocrinology referrals for fertility preservation received their consultations between ages 16 and 24, with 19 years having been the median age at which they occurred. Gender dysphoria onset happened at a median age of 12 for the patients, who were evaluated for it at a median age of 17.

All but one patient submitted at least one semen sample, and eight ultimately cryopreserved their semen.

The eight samples from gender-affirming therapy–naive patients had abnormal morphology, with the median morphology having been 6% versus the normal range of greater than 13.0%. Otherwise, the samples collected were normal, but the authors noted that established semen analysis parameters don’t exist for adolescents and young adults.

All eight patients who had their semen cryopreserved, began gonadotropin-releasing hormone (GnRH) agonist therapy after cryopreservation, and four of those patients concurrently began taking estradiol.

One patient had already been taking intramuscular leuprolide acetate every 6 months and discontinued it to attempt fertility preservation. Spermatogenesis returned after 5 months of azoospermia, albeit with abnormal morphology (9%).

Another patient had been taking spironolactone and estradiol for 26 months before ceasing therapy to attempt fertility preservation. She remained azoospermic 4 months after stopping therapy and then moved forward with an orchiectomy.

“For many transgender patients, the potential need to discontinue GnRH agonist or gender-affirming therapy to allow for resumption of spermatogenesis may be a significant barrier to pursuing fertility preservation because cessation of therapy may result in exacerbation of gender dysphoria and progression of undesired male secondary sex characteristics,” the researchers wrote. “For individuals for whom this risk is not acceptable or if azoospermia is noted on semen analysis, there are several alternate options, including electroejaculation, testicular sperm extraction, and testicular tissue cryopreservation,” they continued. Electroejaculation with a transrectal probe is an option particularly for those who cannot masturbate or feel uncomfortable doing so, the authors explained.

For those who have not previously received gender-affirming therapy, the fertility preservation “process can be completed quickly, with collections occurring every 2 to 3 days to preserve several samples before initiating GnRH agonist or gender-affirming therapy,” they concluded.

SOURCE: Barnard EP et al. Pediatrics. 2019 Aug 5. doi: 10.1542/peds.2018-3943.

There is probably no area where human contact is more important than in the area of counseling and psychotherapy. Or so most of us have thought. It turns out that, even in behavioral medicine, technology has made fantastic inroads in helping patients achieve real improvement in troublesome behavioral symptoms. There is good evidence that digital interfaces for cognitive behavioral therapy (CBT) can help in the treatment of anxiety and depression. We will not go over that evidence in this column, other than to say that the evidence is there, but rather we will review some of the best apps that those of us in primary care can utilize in the care of our patients. It is our opinion that these apps are best used in conjunction with our care to supplement the counseling we are giving our patients in the office. Many of the apps listed may be used for both anxiety and depression, as well as in areas related to problem solving, self-esteem, anger management, creating lifestyle changes, and coping with uncertainty.

MoodKit

MoodKit is a CBT app with four main tools: a collection of activities focused on coping self-efficacy (a person’s belief in success in specific situations) that includes individual productivity, social relationships, physical activity, and healthy habits; a thought checker; mood tracker; and journal. MoodKit is accessed in an unstructured way and can be used as an unguided self-help app. It is useful in patient interactions to access interventions in areas such as social engagement and options for choosing a healthy lifestyle. It is available in Apple’s App Store, and it costs $4.99.

Moodnotes

Based on CBT and positive psychology, Moodnotes assists in recognizing and learning about “traps” in thinking, as well as emphasizing healthier thinking habits. Traps in thinking include “catastrophic thinking” where patients with depression may think that a small error or behavioral indiscretion may lead to a consequence that far exceeds what is likely, or “mind-reading” where a person assumes that others are critical of them without actually having evidence that this is the case. Moodnotes tracks mood over a period of time while identifying factors that influence it. It is helpful in between visits to aid clinicians in gaining perspective on mood patterns. It is available in the App Store; it costs $4.99.

MoodMission

This app recommends strategies based in CBT after input of low moods or feelings of anxiety. MoodMission provides five “missions” to engage in that promote confidence in handling stressors and promotes coping self-efficacy. The app learns what style works best and tailors techniques according to when a patient uses it most frequently. Rewards in the app are used to promote motivation and to increase pleasure and self-confidence. It is useful for patients who could use a lift in mood or decrease in symptoms of anxiety and depression. It available in the App Store and Google Play, and it’s free.

What’s Up

In line with its development based on principles from CBT and Acceptance and Commitment Therapy (ACT), What’s Up identifies common negative thinking patterns and methods to overcome them with useful metaphors, a catastrophe scale, grounding techniques, and breathing exercises. What’s Up syncs data across multiple devices and uses a unique passcode to protect this information. One of the abilities that separates it from other apps is that it can become active in forums where people discuss similar feelings and strategies that have been useful for them. It is available in the App Store and Google Play, and it’s free.

Moodpath

Moodpath uses daily screenings to create better understanding of thoughts, feelings, and emotions. If needed, it provides a discussion guide to talking with a medical professional based on answers to its daily screenings. Included in the app are over 150 psychological exercises and videos to promote and strengthen overall mental health. It is useful in introducing how to discuss mental health with a professional. It is available in the App Store and Google Play free of cost.

MindShift CBT

Designed to assist youth and young adults in coping with anxiety, MindShift constructs an individualized toolbox to help individuals deal with test anxiety, perfectionism, social anxiety, worry, panic, and conflict. The app includes directions on how to construct “belief experiments” to test common beliefs that fuel anxiety, guided relaxation, as well as tools and tips to help set and accomplish goals. It is useful in helping teens and young adults learn about helpful and unhelpful anxiety, as well as to overcome fears by gradually facing them in manageable steps. It is available in the App Store and Google Play for free.

CBT-i Coach

CBT-i Coach, based on principles of cognitive behavioral therapy for insomnia (CBT-i), is a structured program to learn about sleep, develop positive sleep routines, and improve sleep environment. The CBT methods used attempt to change behaviors, which in turn provides confidence that patients will sleep better on a regular basis. It useful as a first-line intervention in treating symptoms of insomnia. It is available in the App Store and Google Play for no cost.

Getselfhelp.co.uk

This website provides free self-help and therapy resources grounded in methods that teach the change agents in CBT that can influence negative and destructive thought patterns. Negative thought patterns include thinking in terms of all or nothing: “Nothing ever works out for me,” fortune telling: “I shouldn’t even try,” and overgeneralization: “This didn’t work so this will not either.” Getselfhelp.co.uk provides handouts on a wide array of symptoms related to anxiety, depression, low self-esteem, panic attacks, social disorder, and more. The solution section of the website supplies interventions that can be printed and saved for future use. It is helpful for clinicians and patients in identifying an area of need and creating an action plan. It is also useful for clinicians to have as an augmented supplement for counseling and is free of cost.

The bottom line

When used correctly the resources that we have reviewed can essentially be deployed in a manner similar to how we use finger-stick blood sugar monitoring in the treatment of diabetes. Each of these technologies works best when combined with clinician input and periodic review. When used to supplement clinician counseling, the apps may help sustain motivation and provide insights and exercises that improve patient engagement and supplement the effect of counseling and/or medications that are prescribed in the office.

Dr. Skolnik is professor of family and community medicine at Jefferson Medical College, Philadelphia, and an associate director of the family medicine residency program at Abington (Pa.) Jefferson Health. Aaron Sutton is a behavioral health consultant and faculty member in the family medicine residency program at Abington Jefferson Health.

There is probably no area where human contact is more important than in the area of counseling and psychotherapy. Or so most of us have thought. It turns out that, even in behavioral medicine, technology has made fantastic inroads in helping patients achieve real improvement in troublesome behavioral symptoms. There is good evidence that digital interfaces for cognitive behavioral therapy (CBT) can help in the treatment of anxiety and depression. We will not go over that evidence in this column, other than to say that the evidence is there, but rather we will review some of the best apps that those of us in primary care can utilize in the care of our patients. It is our opinion that these apps are best used in conjunction with our care to supplement the counseling we are giving our patients in the office. Many of the apps listed may be used for both anxiety and depression, as well as in areas related to problem solving, self-esteem, anger management, creating lifestyle changes, and coping with uncertainty.

MoodKit

MoodKit is a CBT app with four main tools: a collection of activities focused on coping self-efficacy (a person’s belief in success in specific situations) that includes individual productivity, social relationships, physical activity, and healthy habits; a thought checker; mood tracker; and journal. MoodKit is accessed in an unstructured way and can be used as an unguided self-help app. It is useful in patient interactions to access interventions in areas such as social engagement and options for choosing a healthy lifestyle. It is available in Apple’s App Store, and it costs $4.99.

Moodnotes

Based on CBT and positive psychology, Moodnotes assists in recognizing and learning about “traps” in thinking, as well as emphasizing healthier thinking habits. Traps in thinking include “catastrophic thinking” where patients with depression may think that a small error or behavioral indiscretion may lead to a consequence that far exceeds what is likely, or “mind-reading” where a person assumes that others are critical of them without actually having evidence that this is the case. Moodnotes tracks mood over a period of time while identifying factors that influence it. It is helpful in between visits to aid clinicians in gaining perspective on mood patterns. It is available in the App Store; it costs $4.99.

MoodMission

This app recommends strategies based in CBT after input of low moods or feelings of anxiety. MoodMission provides five “missions” to engage in that promote confidence in handling stressors and promotes coping self-efficacy. The app learns what style works best and tailors techniques according to when a patient uses it most frequently. Rewards in the app are used to promote motivation and to increase pleasure and self-confidence. It is useful for patients who could use a lift in mood or decrease in symptoms of anxiety and depression. It available in the App Store and Google Play, and it’s free.

What’s Up

In line with its development based on principles from CBT and Acceptance and Commitment Therapy (ACT), What’s Up identifies common negative thinking patterns and methods to overcome them with useful metaphors, a catastrophe scale, grounding techniques, and breathing exercises. What’s Up syncs data across multiple devices and uses a unique passcode to protect this information. One of the abilities that separates it from other apps is that it can become active in forums where people discuss similar feelings and strategies that have been useful for them. It is available in the App Store and Google Play, and it’s free.

Moodpath

Moodpath uses daily screenings to create better understanding of thoughts, feelings, and emotions. If needed, it provides a discussion guide to talking with a medical professional based on answers to its daily screenings. Included in the app are over 150 psychological exercises and videos to promote and strengthen overall mental health. It is useful in introducing how to discuss mental health with a professional. It is available in the App Store and Google Play free of cost.

MindShift CBT

Designed to assist youth and young adults in coping with anxiety, MindShift constructs an individualized toolbox to help individuals deal with test anxiety, perfectionism, social anxiety, worry, panic, and conflict. The app includes directions on how to construct “belief experiments” to test common beliefs that fuel anxiety, guided relaxation, as well as tools and tips to help set and accomplish goals. It is useful in helping teens and young adults learn about helpful and unhelpful anxiety, as well as to overcome fears by gradually facing them in manageable steps. It is available in the App Store and Google Play for free.

CBT-i Coach

CBT-i Coach, based on principles of cognitive behavioral therapy for insomnia (CBT-i), is a structured program to learn about sleep, develop positive sleep routines, and improve sleep environment. The CBT methods used attempt to change behaviors, which in turn provides confidence that patients will sleep better on a regular basis. It useful as a first-line intervention in treating symptoms of insomnia. It is available in the App Store and Google Play for no cost.

Getselfhelp.co.uk

This website provides free self-help and therapy resources grounded in methods that teach the change agents in CBT that can influence negative and destructive thought patterns. Negative thought patterns include thinking in terms of all or nothing: “Nothing ever works out for me,” fortune telling: “I shouldn’t even try,” and overgeneralization: “This didn’t work so this will not either.” Getselfhelp.co.uk provides handouts on a wide array of symptoms related to anxiety, depression, low self-esteem, panic attacks, social disorder, and more. The solution section of the website supplies interventions that can be printed and saved for future use. It is helpful for clinicians and patients in identifying an area of need and creating an action plan. It is also useful for clinicians to have as an augmented supplement for counseling and is free of cost.

The bottom line

When used correctly the resources that we have reviewed can essentially be deployed in a manner similar to how we use finger-stick blood sugar monitoring in the treatment of diabetes. Each of these technologies works best when combined with clinician input and periodic review. When used to supplement clinician counseling, the apps may help sustain motivation and provide insights and exercises that improve patient engagement and supplement the effect of counseling and/or medications that are prescribed in the office.

Dr. Skolnik is professor of family and community medicine at Jefferson Medical College, Philadelphia, and an associate director of the family medicine residency program at Abington (Pa.) Jefferson Health. Aaron Sutton is a behavioral health consultant and faculty member in the family medicine residency program at Abington Jefferson Health.

There is probably no area where human contact is more important than in the area of counseling and psychotherapy. Or so most of us have thought. It turns out that, even in behavioral medicine, technology has made fantastic inroads in helping patients achieve real improvement in troublesome behavioral symptoms. There is good evidence that digital interfaces for cognitive behavioral therapy (CBT) can help in the treatment of anxiety and depression. We will not go over that evidence in this column, other than to say that the evidence is there, but rather we will review some of the best apps that those of us in primary care can utilize in the care of our patients. It is our opinion that these apps are best used in conjunction with our care to supplement the counseling we are giving our patients in the office. Many of the apps listed may be used for both anxiety and depression, as well as in areas related to problem solving, self-esteem, anger management, creating lifestyle changes, and coping with uncertainty.

MoodKit

MoodKit is a CBT app with four main tools: a collection of activities focused on coping self-efficacy (a person’s belief in success in specific situations) that includes individual productivity, social relationships, physical activity, and healthy habits; a thought checker; mood tracker; and journal. MoodKit is accessed in an unstructured way and can be used as an unguided self-help app. It is useful in patient interactions to access interventions in areas such as social engagement and options for choosing a healthy lifestyle. It is available in Apple’s App Store, and it costs $4.99.

Moodnotes

Based on CBT and positive psychology, Moodnotes assists in recognizing and learning about “traps” in thinking, as well as emphasizing healthier thinking habits. Traps in thinking include “catastrophic thinking” where patients with depression may think that a small error or behavioral indiscretion may lead to a consequence that far exceeds what is likely, or “mind-reading” where a person assumes that others are critical of them without actually having evidence that this is the case. Moodnotes tracks mood over a period of time while identifying factors that influence it. It is helpful in between visits to aid clinicians in gaining perspective on mood patterns. It is available in the App Store; it costs $4.99.

MoodMission

This app recommends strategies based in CBT after input of low moods or feelings of anxiety. MoodMission provides five “missions” to engage in that promote confidence in handling stressors and promotes coping self-efficacy. The app learns what style works best and tailors techniques according to when a patient uses it most frequently. Rewards in the app are used to promote motivation and to increase pleasure and self-confidence. It is useful for patients who could use a lift in mood or decrease in symptoms of anxiety and depression. It available in the App Store and Google Play, and it’s free.

What’s Up

In line with its development based on principles from CBT and Acceptance and Commitment Therapy (ACT), What’s Up identifies common negative thinking patterns and methods to overcome them with useful metaphors, a catastrophe scale, grounding techniques, and breathing exercises. What’s Up syncs data across multiple devices and uses a unique passcode to protect this information. One of the abilities that separates it from other apps is that it can become active in forums where people discuss similar feelings and strategies that have been useful for them. It is available in the App Store and Google Play, and it’s free.

Moodpath

Moodpath uses daily screenings to create better understanding of thoughts, feelings, and emotions. If needed, it provides a discussion guide to talking with a medical professional based on answers to its daily screenings. Included in the app are over 150 psychological exercises and videos to promote and strengthen overall mental health. It is useful in introducing how to discuss mental health with a professional. It is available in the App Store and Google Play free of cost.

MindShift CBT

Designed to assist youth and young adults in coping with anxiety, MindShift constructs an individualized toolbox to help individuals deal with test anxiety, perfectionism, social anxiety, worry, panic, and conflict. The app includes directions on how to construct “belief experiments” to test common beliefs that fuel anxiety, guided relaxation, as well as tools and tips to help set and accomplish goals. It is useful in helping teens and young adults learn about helpful and unhelpful anxiety, as well as to overcome fears by gradually facing them in manageable steps. It is available in the App Store and Google Play for free.

CBT-i Coach

CBT-i Coach, based on principles of cognitive behavioral therapy for insomnia (CBT-i), is a structured program to learn about sleep, develop positive sleep routines, and improve sleep environment. The CBT methods used attempt to change behaviors, which in turn provides confidence that patients will sleep better on a regular basis. It useful as a first-line intervention in treating symptoms of insomnia. It is available in the App Store and Google Play for no cost.

Getselfhelp.co.uk

This website provides free self-help and therapy resources grounded in methods that teach the change agents in CBT that can influence negative and destructive thought patterns. Negative thought patterns include thinking in terms of all or nothing: “Nothing ever works out for me,” fortune telling: “I shouldn’t even try,” and overgeneralization: “This didn’t work so this will not either.” Getselfhelp.co.uk provides handouts on a wide array of symptoms related to anxiety, depression, low self-esteem, panic attacks, social disorder, and more. The solution section of the website supplies interventions that can be printed and saved for future use. It is helpful for clinicians and patients in identifying an area of need and creating an action plan. It is also useful for clinicians to have as an augmented supplement for counseling and is free of cost.

The bottom line

When used correctly the resources that we have reviewed can essentially be deployed in a manner similar to how we use finger-stick blood sugar monitoring in the treatment of diabetes. Each of these technologies works best when combined with clinician input and periodic review. When used to supplement clinician counseling, the apps may help sustain motivation and provide insights and exercises that improve patient engagement and supplement the effect of counseling and/or medications that are prescribed in the office.

Dr. Skolnik is professor of family and community medicine at Jefferson Medical College, Philadelphia, and an associate director of the family medicine residency program at Abington (Pa.) Jefferson Health. Aaron Sutton is a behavioral health consultant and faculty member in the family medicine residency program at Abington Jefferson Health.

Autism spectrum disorder (ASD) has increased significantly over the past 40 years. Even in the past 2 decades, the prevalence increased from 6.7 per 1,000 in 2000¹ to 14.6 per 1,000 in 2012—1 in 59 people.² Of those with ASD, 46% have an intelligence quotient (IQ) greater than 85, meaning they are of average or above-average intelligence.¹

See related editorial

As more children with autism become adults, understanding this condition across the life span grows paramount. While many studies have focused on understanding how diagnosis and treatment can help young children, few have focused on adults with autism and how primary care teams can better assist these individuals. However, this is changing, with studies of the benefits of employment programs and pharmacologic treatment, and reproductive health needs of adults with ASD. Here we provide an updated review of ASD in adult patients.

NO MORE ASPERGER SYNDROME— IT’S ON THE SPECTRUM NOW

As the scientific understanding of autism has expanded, revisions in the Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-5),³ published in 2013, have paralleled these advances. For many adult patients with autism who were evaluated as children, these revisions have led to changes in diagnosis and available services.

In the previous edition (DSM-IV-TR, published in 2000),⁴ autistic disorder and Asperger syndrome were separate (Table 1). However, DSM-5 lumped autistic disorder and Asperger disorder together under the diagnosis of ASD; this leaves it to the clinician to specify whether the patient with ASD has accompanying intellectual or language impairment and to assign a level of severity based on communication deficits and restrictive behaviors.

The shift in diagnosis was worrisome for some, particularly for clinicians treating patients with DSM-IV Asperger syndrome, who lost this diagnostic label. Concerns that patients with Asperger syndrome may not meet the DSM-5 criteria for ASD were validated by a systematic review showing that only 50% to 75% of patients with DSM-IV autistic disorder, Asperger syndrome, or pervasive developmental disorder not otherwise specified (PDD-NOS) met the DSM-5 criteria for ASD.⁵ Most of those who no longer met the criteria for ASD carried a DSM-IV diagnosis of Asperger syndrome or PDD-NOS or had an IQ over 70.⁵ Nevertheless, these individuals may struggle with impairing symptoms related to repetitive behaviors or communication or may be affected by learning or social-emotional disabilities. Additionally, even if they meet the criteria for ASD, some may identify with the Asperger syndrome label and fear they will be stigmatized should they be classified as having the more general ASD.^6,7

Although future revisions to the DSM may include further changes in classification, grouping adults with ASD according to their functional and cognitive ability may allow for pragmatic characterization of their needs. At least 3 informal groupings of autistic adults have been described that integrate cognitive ability and independence⁸:

• Those with low cognitive and social abilities, who need lifelong support
• Those with midrange cognitive and social limitations but who can complete their work in special education classes; they often find employment in supervised workshops or other work with repetitive tasks
• Those who have greater cognitive ability and some social skills; they may proceed to college and employment and live independently.

UNCERTAIN PROGNOSIS

Prognostication for people with ASD remains an area of research. Some adults experience a reduction in symptoms as they age, with significant improvements in speech and, sometimes, modest improvements in restrictive and repetitive behaviors.^9,10

Nevertheless, autism remains a lifelong disorder for many. Adults may still require significant support and may experience impairment, particularly in social interaction.¹⁰ In longitudinal studies, only 15% to 27% of patients with ASD are characterized as having a positive outcome (often defined as variables related to independent function, near-normal relationships, employment, or a quantified reduction in core symptoms), and many experience significant dependency into adulthood.^10–13

IQ has been cited as a possible prognostic factor,^10,13 with an IQ below 70 associated with poorer outcome, although an IQ above 70 does not necessarily confer a positive outcome. Less-severe impairment in speech at baseline in early childhood also suggests better outcomes in adulthood.¹⁰

As we see more adults with autism, studies that include both children and adults, such as the Longitudinal European Autism Cohort, will be important to characterize the natural history, comorbidities, and genetics of ASD and may help provide more specific predictors of disease course into adulthood.¹⁴

While many patients are recognized as having autism in early to mid-childhood, some adults may not receive a formal diagnosis until much later in life. Those with fluent language and normal-range IQ are likely to be overlooked.¹⁵ People with ASD may have had mild symptoms during childhood that did not impair their functioning until demands of daily life exceeded their capacities in adulthood. Alternatively, parents of a child with newly diagnosed ASD may realize that they themselves or another adult family member also show signs of it.

The UK National Institute of Health and Care Excellence suggests that assessment should be considered if the patient meets psychiatric diagnostic criteria and one of the following:

• Difficulty obtaining or sustaining employment or education
• Difficulty initiating or sustaining social relationships
• Past or current contact with mental health or learning disability services
• History of a neurodevelopmental or mental health disorder.^15,16

Currently, diagnosis typically involves a multidisciplinary approach, with psychiatric assessment, neuropsychological testing, and speech and language evaluation.¹⁷ Providers may need to refer patients for these services, sometimes at the patient’s request, if previous mental health misdiagnoses are suspected, if patients report symptoms or impairment consistent with ASD, or if benefits, services, or accommodations, such as a coach in the workplace, are needed.

Diagnosing ASD in adults can be difficult, given that the gold-standard diagnostic tests such as the Autism Diagnostic Observation Schedule-2 (ADOS-2)¹⁸ and the Autism Diagnostic Interview-Revised (ADI-R)¹⁹ are typically used to diagnose autism in children. However, Module 4 in the ADOS-2 was developed for adolescents and older patients with fluent language and has shown at least moderate power to distinguish adults with ASD from those without ASD.^18,20

An initial psychiatric assessment should include a thorough history taken from the patient and, if applicable, the patient’s caregiver, as well as a psychiatric interview of the patient. Neuropsychological testing should include evaluation of cognitive function, social functioning (using the ADOS-2 for adults without intellectual disability, the ADI-R, or both), and adaptive functioning (using the Vineland Adaptive Behavior Scales, second edition²¹).

Evaluation of speech and language is particularly important in patients with limited language ability and should include both expressive and receptive language abilities. Serial testing every few years, as is often recommended in childhood, may help establish the pattern of impairment over time.

Comorbid psychiatric disorders are common

Many people with ASD also have other psychiatric disorders,^17,22 which clinicians should keep in mind when seeing an adult seeking evaluation for ASD.

Attention-deficit/hyperactivity disorder is present at higher rates in patients of average intellectual function with ASD than in the general population.²³

Anxiety disorders, including obsessive-compulsive disorder, were found to often coexist with autism in a sample of adults with autism without intellectual disability,^24,25 and approximately 40% of youths with ASD have at least 1 comorbid anxiety disorder.²⁶

Mood disorders are also prevalent in adults with ASD, with a small study showing that 70% of adults with DSM-IV Asperger syndrome had at least 1 depressive episode in their lifetime.²⁷

BEHAVIORAL AND PHARMACOLOGIC THERAPIES FOR THE ADULT PATIENT

Services and medications for adults with ASD are discussed below. These will vary by individual, and services available may vary by region.

Historically, vocational and social outcomes have been poor for adults with ASD. It is estimated that most larger universities may be home to 100 to 300 students with ASD. To combat isolation, the University of California, Los Angeles, the University of Alabama, and others provide special support services, including group social activities such as board games and individual coaching.⁸ Nevertheless, half of the students with autism who attend institutions of higher learning leave without completing their intended degree.²⁹ Many still struggle to establish meaningful friendships or romantic relationships.²⁹

Planning for a transition of care

Healthcare transition planning is important  but is strikingly underused.³⁰ Individual providers, including adult psychiatrists, vary in their level of training and comfort in diagnosing, treating, and monitoring adults with autism. Youths with ASD are half as likely to receive healthcare transition services as other youths with special healthcare needs.³¹

Pediatric providers, including pediatric psychiatrists, developmental behavioral specialists, and pediatric neurologists, may be best equipped to treat young adult patients or to refer patients to appropriate generalists and specialists comfortable with autism-specific transition of care. The question of eligibility for services is important to patients and families during the transition period, with many parents and professionals unaware of services available to them.³² Receiving adequate transition services is enabled by having a medical home during childhood—that is, a comprehensive, centralized medical record, culturally competent care, interaction with schools, and patient access to clear, unbiased information.³¹

Ideally, in our experience, transitioning should be discussed well before the child ages out of the pediatric provider’s practice. If necessary, healthcare transition services should include 4 components:

• Discussing the switch to a new physician who treats adults
• Discussing changing healthcare needs as an adult
• Planning insurance coverage as an adult
• Encouragement by the physician for the child to take age-appropriate responsibility for his or her healthcare.^31,33

Tools such as the Got Transition checklist from the National Health Care Transition Center can provide support during this process.³⁴

Other services

Other services provided as an extension or adjunct to the medical home in early adulthood may include customized vocational or employment training, specialized mentorship or support in a college setting, housing support, and psychological services.³⁵

Community-based programs that emphasize leisure have been shown to improve participants’ independence and quality of life.³⁶ Similarly, participants in programs that emphasized supported employment, with a job coach, on-the-job support, collaboration with the participant’s larger social support network, and selection of tasks to match an individual’s abilities and strengths, demonstrated improved cognitive performance, particularly executive functioning,³⁷ and employment.^38,39 These programs work best for patients who have mild to moderate symptoms.^37,39

Patients with symptoms that are more severe may do better in a residential program. Many of these programs maintain an emphasis on vocational and social skills development. One such long-standing program is Bittersweet Farms, a rural farming community in Ohio for adults with ASD, where individuals with moderate to low function live in a group setting, with emphasis on scheduled, meaningful work including horticulture, animal care, carpentry; and activities of daily living.⁴⁰

Studies of patients across the autism spectrum have generally found better outcomes when vocational support is given, but larger and randomized studies are needed to characterize how to best support these individuals after they leave high school.⁴¹

Psychological services such as applied behavioral therapy, social cognition training, cognitive behavioral therapy, and mindfulness training may be particularly useful in adults.^42–44

Some versions of applied behavioral therapy, such as the Early Start Denver Model,⁴⁵ have been found to be cost-effective and offset some expenses in the care of children with autism, using play-based and relationship-based interventions to promote development across domains while reducing symptoms.

In randomized controlled trials, modified cognitive behavioral therapy⁴³ and mindfulness⁴⁴ were shown to reduce symptoms of anxiety, obsessive-compulsive disorder, and depression.

Dialectical behavior therapy, used to find a balance between accepting oneself and desiring to change, may help in some circumstances to regulate emotions and reduce reactivity and lability, although large randomized clinical trials have not been conducted in the ASD population.⁴⁶

Drug therapy

Medications may be appropriate to manage symptoms or comorbid conditions in adults with ASD. Over 75% adults with ASD have been found to use psychotropic medications.⁴⁷ However, although these drugs have been approved for treating behaviors commonly associated with ASD, none of them provide definitive treatment for this disorder, and they have not been rigorously tested or approved for use in adults with ASD.⁴⁸

Irritability and aggression associated with ASD can be treated with risperidone (approved for children over age 5), aripiprazole (approved for children ages 6–17), clozapine, or haloperidol.⁴⁹

Aberrant social behavior can be treated with risperidone.⁵⁰ Treatments under investigation include oxytocin and secretin.⁴⁹

While no approved drug has been shown to improve social communication,⁵¹ balovaptan, a vasopressin V1a agonist, has shown potential and has been granted breakthrough status by the US Food and Drug Administration for treating challenging behaviors in adults, with additional studies ongoing in children.^52,53

Repetitive behaviors, if the patient finds them impairing, can be managed with selective serotonin reuptake inhibitors.⁴⁹

Much more study of drug therapy in adults with ASD is needed to fully understand the best approaches to psychotropic medication use, including appropriate classes and effective dosage, in this population.

SEX: UNEXPLORED TERRITORY

The reproductive health needs of people with autism remain largely underexplored.⁵⁴ Historically, individuals with ASD were thought to have little interest in sexual activity or parenthood, owing to the nature of the core symptoms of the disorder. This has been shown to be untrue, particularly as studies on this topic began to engage in direct interviews with people with ASD, rather than solely gathering information from caregivers or parents. The findings reinforce the importance of broaching this component of health in this population, for the following reasons:

Adults with ASD are at increased risk of sexual victimization, with nearly 4 out of 5 reporting unwanted sexual advances, coercion, or rape.⁵⁵

They have a smaller pool of knowledge with respect to sexual health. They report⁵⁶ that they learned about sex from television and from “making mistakes.” They use fewer sources. They are less likely to speak to peers and figures of authority to gain knowledge about sexually transmitted infections, sexual behaviors, and contraception. And they are more likely to use forms of nonsocial media, such as television, for information.⁵⁵

They report more concerns about the future with respect to sexual behavior, suggesting the need for targeted sexual education programs.⁵⁶

College-age young adults with ASD who misread communication may be particularly affected by Title IX, which requires schools to promptly investigate reports of sexual harassment and sexual assault, should they struggle to comport themselves appropriately.⁵⁷ Early and frank conversations about issues of consent and appropriate displays of interest and affection may better equip youth to navigate new social scenarios as they plan to leave a supervised home environment for college or the workforce.

Gender identification: Male, female, other

In one study, 77.8% of birth-sex males with ASD said they identified as men, and 67.1% of birth-sex females identified as women,  compared with 93.1% of birth-sex males and 87.3% of birth-sex females without ASD. Many of the remaining individuals with ASD reported a transgender, genderqueer, or other gender identity.⁵⁸ Some studies have found females with ASD report a gay or bisexual orientation more often than males with ASD.^59–61

Adolescents and young adults may be exploring their changing bodies, sexual preferences, and gender roles, and as for all people at this age, these roles emerge against a backdrop of familial and societal expectations that may or may not be concordant with their own projected path regarding sexuality and reproductive health.⁶²

Having the conversation

As with non-ASD patients, a thorough sexual history should be collected via open-ended questions when possible to determine types of sexual activity and partners.

Education of the patient, alongside caregivers and parents, about healthy and safe sexual practices, screening for sexual violence, and hormonal and nonhormonal contraception options are important components of care for this population.

CAREGIVER STRESS MAY PERSIST INTO PATIENT’S ADULTHOOD

Caregiver burden is a monumental concern for parents or others who may have lifelong primary responsibility for these neurodiverse adults.⁶³ Family members may feel isolated and may feel they have encountered many barriers to services.⁶⁴ Remaining sensitive, knowledgeable, and inquisitive about the types of support that are needed may help forge a trusting relationship between the provider and the family.

Parents of children with ASD have been reported to experience worse physical and emotional health than parents whose children do not have developmental disabilities.^63,65 These disparities have been found to persist  as their children enter adolescence and young adulthood.^66,67 Parents of children with ASD report more anxiety, depression, and distress compared with parents of children without ASD,⁶³ and parents themselves may be affected by ASD symptoms, which has been linked to increased parenting stress.⁶⁸ Some studies have found blunted cortisol responses,^63,69,70 and some,⁷¹ but not all,⁶³ have found elevated blood pressure in caregivers of children with developmental disabilities. Headache, backache, muscle soreness, and fatigue may also be commonly reported.⁶⁷

In our experience, caregivers are tremendously appreciative when provided connections to adult ASD services and support systems as their child ages. The school system and other formal support systems often assist until the time of transition into adulthood. This transition can be stressful for the adolescent and family alike, and informal support systems such as friends and family may become increasingly crucial, particularly if the adolescent still lives at home.^72,73

The affected young adult’s unmet needs, as perceived by the caregiver, have been found to be significantly associated with caregiver burden, whereas the severity of the adult patient’s ASD symptoms has not.⁶⁶ Therefore, it may be helpful to ask caregivers whether they perceive any unmet needs, regardless of the clinician’s perception of the severity of the patient’s ASD symptoms. Providing support to address these needs, particularly those relating to the child’s mood disorders, communication, social needs, safety, and daytime activities, may be the domains of support that most effectively reduce the caregiver burden in this population.⁶⁶

Caregiver positivity, lower stress levels, and increased social support, particularly in the form of friends and family members providing no-cost assistance to caregivers whose children do not live independently,⁷⁴ have been linked to better outcomes for caregivers.^70,74,75 Rigorous studies that examine caregiver burden as individuals with ASD enter mid- and late-adulthood are limited.

THE ROLE OF THE INTERNIST IN CARING FOR ADULTS WITH AUTISM

A major challenge for many adults with ASD is the transition from services provided during childhood to those provided in adulthood. While children with autism have subspecialty providers who diagnose and manage their condition, including developmental-behavioral pediatricians, pediatric neurologists, and child psychiatrists, adults with autism may have fewer options.

Autism centers are becoming more available across the nation, and many provide care across the life span. However, depending on a patient’s needs, the primary care provider may need to manage residual symptoms as the patient transitions from pediatric to adult care, ultimately deciding when and where to refer the patient.

The patient’s family should pay close attention to function and mood around the time the patient leaves the structure of high school, and they should build rapport with a primary care provider they can turn to if problems persist or arise. Referrals for behavioral therapy and for social work, job training, and vocational support can greatly benefit patients as they transition to young adulthood. Referrals and suggestions for social support can also help caregivers.

Medical care

Deciding when and how to medicate the patient for symptoms of autism and related behaviors necessitates consideration of the patient’s impairment, side effects of the medication, and the impact medications may have on the patient’s other conditions. Disordered eating, mood problems, anxiety, and attention-deficit/hyperactivity disorder should be considered, and, as in all patients, regular screenings of mental health status should be conducted.^76,77

Comorbid medical conditions may cause worsening of a patient’s known behavioral symptoms or may precipitate new behaviors or aggression as a result of pain or discomfort, particularly in patients with limited speech. A change in stereotypes or increased irritability warrants a thoughtful investigation for a cause other than ASD before adding or increasing behavioral medications. Common comorbid conditions include gastrointestinal distress, most commonly constipation and diarrhea in an idiopathic ASD population, with increasing ASD symptom severity correlating with increased odds of a gastrointestinal problem.⁷⁸ Allergies, sleep disorders, seizures, and other psychiatric conditions are also frequent.⁷⁹

Preventive care, including vaccinations, should be given as scheduled. Caregivers and patients can be reminded if needed that vaccines do not cause or worsen autism, and vaccination is intended to improve the safety of the patient and those around them, protecting against potentially life-threatening disease. Regular dental care visits, particularly for patients who are using medications that may affect tooth or gingival health,⁸⁰ and regular visits to an optometrist or ophthalmologist for screening of vision are also advised.

Adverse effects. Weight gain and metabolic syndrome are common adverse effects of medications used for behavioral management, and the primary care physician may uncover diabetes, cardiac disorders, and hyperlipidemia. Patients with ASD may be particularly sensitive to the effects of medications and therefore may require a lower dose or a slower titration than other patients. Working with a behavioral team, careful weaning of psychiatric medications to the minimum needed is strongly recommended whenever possible.⁸¹

TAKE-HOME POINTS

As more adults with autism enter society, they may require varying levels of support from the healthcare community to ensure that therapeutic gains from childhood persist, allowing them to achieve maximal functional potential.

Adults with ASD may have a high, normal, or low IQ and intellectual capability. Knowledge of this and of the patient’s symptom severity and presence of comorbid psychiatric and other health conditions can help the clinician guide the patient to appropriate social services and pharmacologic treatments.

Individualized support in the workplace, as well as education regarding sexual health, can help improve outcomes for affected individuals.

Caregiver burden for individuals with autism can be high, but it can be mitigated by social support.

Further research regarding appropriate diagnostic instruments in adulthood and appropriate treatments for impairing autism-related symptoms across the life span may be particularly helpful in supporting this patient population.

Autism spectrum disorder (ASD) has increased significantly over the past 40 years. Even in the past 2 decades, the prevalence increased from 6.7 per 1,000 in 2000¹ to 14.6 per 1,000 in 2012—1 in 59 people.² Of those with ASD, 46% have an intelligence quotient (IQ) greater than 85, meaning they are of average or above-average intelligence.¹

See related editorial

As more children with autism become adults, understanding this condition across the life span grows paramount. While many studies have focused on understanding how diagnosis and treatment can help young children, few have focused on adults with autism and how primary care teams can better assist these individuals. However, this is changing, with studies of the benefits of employment programs and pharmacologic treatment, and reproductive health needs of adults with ASD. Here we provide an updated review of ASD in adult patients.

NO MORE ASPERGER SYNDROME— IT’S ON THE SPECTRUM NOW

As the scientific understanding of autism has expanded, revisions in the Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-5),³ published in 2013, have paralleled these advances. For many adult patients with autism who were evaluated as children, these revisions have led to changes in diagnosis and available services.

In the previous edition (DSM-IV-TR, published in 2000),⁴ autistic disorder and Asperger syndrome were separate (Table 1). However, DSM-5 lumped autistic disorder and Asperger disorder together under the diagnosis of ASD; this leaves it to the clinician to specify whether the patient with ASD has accompanying intellectual or language impairment and to assign a level of severity based on communication deficits and restrictive behaviors.

The shift in diagnosis was worrisome for some, particularly for clinicians treating patients with DSM-IV Asperger syndrome, who lost this diagnostic label. Concerns that patients with Asperger syndrome may not meet the DSM-5 criteria for ASD were validated by a systematic review showing that only 50% to 75% of patients with DSM-IV autistic disorder, Asperger syndrome, or pervasive developmental disorder not otherwise specified (PDD-NOS) met the DSM-5 criteria for ASD.⁵ Most of those who no longer met the criteria for ASD carried a DSM-IV diagnosis of Asperger syndrome or PDD-NOS or had an IQ over 70.⁵ Nevertheless, these individuals may struggle with impairing symptoms related to repetitive behaviors or communication or may be affected by learning or social-emotional disabilities. Additionally, even if they meet the criteria for ASD, some may identify with the Asperger syndrome label and fear they will be stigmatized should they be classified as having the more general ASD.^6,7

Although future revisions to the DSM may include further changes in classification, grouping adults with ASD according to their functional and cognitive ability may allow for pragmatic characterization of their needs. At least 3 informal groupings of autistic adults have been described that integrate cognitive ability and independence⁸:

• Those with low cognitive and social abilities, who need lifelong support
• Those with midrange cognitive and social limitations but who can complete their work in special education classes; they often find employment in supervised workshops or other work with repetitive tasks
• Those who have greater cognitive ability and some social skills; they may proceed to college and employment and live independently.

UNCERTAIN PROGNOSIS

Prognostication for people with ASD remains an area of research. Some adults experience a reduction in symptoms as they age, with significant improvements in speech and, sometimes, modest improvements in restrictive and repetitive behaviors.^9,10

Nevertheless, autism remains a lifelong disorder for many. Adults may still require significant support and may experience impairment, particularly in social interaction.¹⁰ In longitudinal studies, only 15% to 27% of patients with ASD are characterized as having a positive outcome (often defined as variables related to independent function, near-normal relationships, employment, or a quantified reduction in core symptoms), and many experience significant dependency into adulthood.^10–13

IQ has been cited as a possible prognostic factor,^10,13 with an IQ below 70 associated with poorer outcome, although an IQ above 70 does not necessarily confer a positive outcome. Less-severe impairment in speech at baseline in early childhood also suggests better outcomes in adulthood.¹⁰

As we see more adults with autism, studies that include both children and adults, such as the Longitudinal European Autism Cohort, will be important to characterize the natural history, comorbidities, and genetics of ASD and may help provide more specific predictors of disease course into adulthood.¹⁴

While many patients are recognized as having autism in early to mid-childhood, some adults may not receive a formal diagnosis until much later in life. Those with fluent language and normal-range IQ are likely to be overlooked.¹⁵ People with ASD may have had mild symptoms during childhood that did not impair their functioning until demands of daily life exceeded their capacities in adulthood. Alternatively, parents of a child with newly diagnosed ASD may realize that they themselves or another adult family member also show signs of it.

The UK National Institute of Health and Care Excellence suggests that assessment should be considered if the patient meets psychiatric diagnostic criteria and one of the following:

• Difficulty obtaining or sustaining employment or education
• Difficulty initiating or sustaining social relationships
• Past or current contact with mental health or learning disability services
• History of a neurodevelopmental or mental health disorder.^15,16

Currently, diagnosis typically involves a multidisciplinary approach, with psychiatric assessment, neuropsychological testing, and speech and language evaluation.¹⁷ Providers may need to refer patients for these services, sometimes at the patient’s request, if previous mental health misdiagnoses are suspected, if patients report symptoms or impairment consistent with ASD, or if benefits, services, or accommodations, such as a coach in the workplace, are needed.

Diagnosing ASD in adults can be difficult, given that the gold-standard diagnostic tests such as the Autism Diagnostic Observation Schedule-2 (ADOS-2)¹⁸ and the Autism Diagnostic Interview-Revised (ADI-R)¹⁹ are typically used to diagnose autism in children. However, Module 4 in the ADOS-2 was developed for adolescents and older patients with fluent language and has shown at least moderate power to distinguish adults with ASD from those without ASD.^18,20

An initial psychiatric assessment should include a thorough history taken from the patient and, if applicable, the patient’s caregiver, as well as a psychiatric interview of the patient. Neuropsychological testing should include evaluation of cognitive function, social functioning (using the ADOS-2 for adults without intellectual disability, the ADI-R, or both), and adaptive functioning (using the Vineland Adaptive Behavior Scales, second edition²¹).

Evaluation of speech and language is particularly important in patients with limited language ability and should include both expressive and receptive language abilities. Serial testing every few years, as is often recommended in childhood, may help establish the pattern of impairment over time.

Comorbid psychiatric disorders are common

Many people with ASD also have other psychiatric disorders,^17,22 which clinicians should keep in mind when seeing an adult seeking evaluation for ASD.

Attention-deficit/hyperactivity disorder is present at higher rates in patients of average intellectual function with ASD than in the general population.²³

Anxiety disorders, including obsessive-compulsive disorder, were found to often coexist with autism in a sample of adults with autism without intellectual disability,^24,25 and approximately 40% of youths with ASD have at least 1 comorbid anxiety disorder.²⁶

Mood disorders are also prevalent in adults with ASD, with a small study showing that 70% of adults with DSM-IV Asperger syndrome had at least 1 depressive episode in their lifetime.²⁷

BEHAVIORAL AND PHARMACOLOGIC THERAPIES FOR THE ADULT PATIENT

Services and medications for adults with ASD are discussed below. These will vary by individual, and services available may vary by region.

Historically, vocational and social outcomes have been poor for adults with ASD. It is estimated that most larger universities may be home to 100 to 300 students with ASD. To combat isolation, the University of California, Los Angeles, the University of Alabama, and others provide special support services, including group social activities such as board games and individual coaching.⁸ Nevertheless, half of the students with autism who attend institutions of higher learning leave without completing their intended degree.²⁹ Many still struggle to establish meaningful friendships or romantic relationships.²⁹

Planning for a transition of care

Healthcare transition planning is important  but is strikingly underused.³⁰ Individual providers, including adult psychiatrists, vary in their level of training and comfort in diagnosing, treating, and monitoring adults with autism. Youths with ASD are half as likely to receive healthcare transition services as other youths with special healthcare needs.³¹

Pediatric providers, including pediatric psychiatrists, developmental behavioral specialists, and pediatric neurologists, may be best equipped to treat young adult patients or to refer patients to appropriate generalists and specialists comfortable with autism-specific transition of care. The question of eligibility for services is important to patients and families during the transition period, with many parents and professionals unaware of services available to them.³² Receiving adequate transition services is enabled by having a medical home during childhood—that is, a comprehensive, centralized medical record, culturally competent care, interaction with schools, and patient access to clear, unbiased information.³¹

Ideally, in our experience, transitioning should be discussed well before the child ages out of the pediatric provider’s practice. If necessary, healthcare transition services should include 4 components:

• Discussing the switch to a new physician who treats adults
• Discussing changing healthcare needs as an adult
• Planning insurance coverage as an adult
• Encouragement by the physician for the child to take age-appropriate responsibility for his or her healthcare.^31,33

Tools such as the Got Transition checklist from the National Health Care Transition Center can provide support during this process.³⁴

Other services

Other services provided as an extension or adjunct to the medical home in early adulthood may include customized vocational or employment training, specialized mentorship or support in a college setting, housing support, and psychological services.³⁵

Community-based programs that emphasize leisure have been shown to improve participants’ independence and quality of life.³⁶ Similarly, participants in programs that emphasized supported employment, with a job coach, on-the-job support, collaboration with the participant’s larger social support network, and selection of tasks to match an individual’s abilities and strengths, demonstrated improved cognitive performance, particularly executive functioning,³⁷ and employment.^38,39 These programs work best for patients who have mild to moderate symptoms.^37,39

Patients with symptoms that are more severe may do better in a residential program. Many of these programs maintain an emphasis on vocational and social skills development. One such long-standing program is Bittersweet Farms, a rural farming community in Ohio for adults with ASD, where individuals with moderate to low function live in a group setting, with emphasis on scheduled, meaningful work including horticulture, animal care, carpentry; and activities of daily living.⁴⁰

Studies of patients across the autism spectrum have generally found better outcomes when vocational support is given, but larger and randomized studies are needed to characterize how to best support these individuals after they leave high school.⁴¹

Psychological services such as applied behavioral therapy, social cognition training, cognitive behavioral therapy, and mindfulness training may be particularly useful in adults.^42–44

Some versions of applied behavioral therapy, such as the Early Start Denver Model,⁴⁵ have been found to be cost-effective and offset some expenses in the care of children with autism, using play-based and relationship-based interventions to promote development across domains while reducing symptoms.

In randomized controlled trials, modified cognitive behavioral therapy⁴³ and mindfulness⁴⁴ were shown to reduce symptoms of anxiety, obsessive-compulsive disorder, and depression.

Dialectical behavior therapy, used to find a balance between accepting oneself and desiring to change, may help in some circumstances to regulate emotions and reduce reactivity and lability, although large randomized clinical trials have not been conducted in the ASD population.⁴⁶

Drug therapy

Medications may be appropriate to manage symptoms or comorbid conditions in adults with ASD. Over 75% adults with ASD have been found to use psychotropic medications.⁴⁷ However, although these drugs have been approved for treating behaviors commonly associated with ASD, none of them provide definitive treatment for this disorder, and they have not been rigorously tested or approved for use in adults with ASD.⁴⁸

Irritability and aggression associated with ASD can be treated with risperidone (approved for children over age 5), aripiprazole (approved for children ages 6–17), clozapine, or haloperidol.⁴⁹

Aberrant social behavior can be treated with risperidone.⁵⁰ Treatments under investigation include oxytocin and secretin.⁴⁹

While no approved drug has been shown to improve social communication,⁵¹ balovaptan, a vasopressin V1a agonist, has shown potential and has been granted breakthrough status by the US Food and Drug Administration for treating challenging behaviors in adults, with additional studies ongoing in children.^52,53

Repetitive behaviors, if the patient finds them impairing, can be managed with selective serotonin reuptake inhibitors.⁴⁹

Much more study of drug therapy in adults with ASD is needed to fully understand the best approaches to psychotropic medication use, including appropriate classes and effective dosage, in this population.

SEX: UNEXPLORED TERRITORY

The reproductive health needs of people with autism remain largely underexplored.⁵⁴ Historically, individuals with ASD were thought to have little interest in sexual activity or parenthood, owing to the nature of the core symptoms of the disorder. This has been shown to be untrue, particularly as studies on this topic began to engage in direct interviews with people with ASD, rather than solely gathering information from caregivers or parents. The findings reinforce the importance of broaching this component of health in this population, for the following reasons:

Adults with ASD are at increased risk of sexual victimization, with nearly 4 out of 5 reporting unwanted sexual advances, coercion, or rape.⁵⁵

They have a smaller pool of knowledge with respect to sexual health. They report⁵⁶ that they learned about sex from television and from “making mistakes.” They use fewer sources. They are less likely to speak to peers and figures of authority to gain knowledge about sexually transmitted infections, sexual behaviors, and contraception. And they are more likely to use forms of nonsocial media, such as television, for information.⁵⁵

They report more concerns about the future with respect to sexual behavior, suggesting the need for targeted sexual education programs.⁵⁶

College-age young adults with ASD who misread communication may be particularly affected by Title IX, which requires schools to promptly investigate reports of sexual harassment and sexual assault, should they struggle to comport themselves appropriately.⁵⁷ Early and frank conversations about issues of consent and appropriate displays of interest and affection may better equip youth to navigate new social scenarios as they plan to leave a supervised home environment for college or the workforce.

Gender identification: Male, female, other

In one study, 77.8% of birth-sex males with ASD said they identified as men, and 67.1% of birth-sex females identified as women,  compared with 93.1% of birth-sex males and 87.3% of birth-sex females without ASD. Many of the remaining individuals with ASD reported a transgender, genderqueer, or other gender identity.⁵⁸ Some studies have found females with ASD report a gay or bisexual orientation more often than males with ASD.^59–61

Adolescents and young adults may be exploring their changing bodies, sexual preferences, and gender roles, and as for all people at this age, these roles emerge against a backdrop of familial and societal expectations that may or may not be concordant with their own projected path regarding sexuality and reproductive health.⁶²

Having the conversation

As with non-ASD patients, a thorough sexual history should be collected via open-ended questions when possible to determine types of sexual activity and partners.

Education of the patient, alongside caregivers and parents, about healthy and safe sexual practices, screening for sexual violence, and hormonal and nonhormonal contraception options are important components of care for this population.

CAREGIVER STRESS MAY PERSIST INTO PATIENT’S ADULTHOOD

Caregiver burden is a monumental concern for parents or others who may have lifelong primary responsibility for these neurodiverse adults.⁶³ Family members may feel isolated and may feel they have encountered many barriers to services.⁶⁴ Remaining sensitive, knowledgeable, and inquisitive about the types of support that are needed may help forge a trusting relationship between the provider and the family.

Parents of children with ASD have been reported to experience worse physical and emotional health than parents whose children do not have developmental disabilities.^63,65 These disparities have been found to persist  as their children enter adolescence and young adulthood.^66,67 Parents of children with ASD report more anxiety, depression, and distress compared with parents of children without ASD,⁶³ and parents themselves may be affected by ASD symptoms, which has been linked to increased parenting stress.⁶⁸ Some studies have found blunted cortisol responses,^63,69,70 and some,⁷¹ but not all,⁶³ have found elevated blood pressure in caregivers of children with developmental disabilities. Headache, backache, muscle soreness, and fatigue may also be commonly reported.⁶⁷

In our experience, caregivers are tremendously appreciative when provided connections to adult ASD services and support systems as their child ages. The school system and other formal support systems often assist until the time of transition into adulthood. This transition can be stressful for the adolescent and family alike, and informal support systems such as friends and family may become increasingly crucial, particularly if the adolescent still lives at home.^72,73

The affected young adult’s unmet needs, as perceived by the caregiver, have been found to be significantly associated with caregiver burden, whereas the severity of the adult patient’s ASD symptoms has not.⁶⁶ Therefore, it may be helpful to ask caregivers whether they perceive any unmet needs, regardless of the clinician’s perception of the severity of the patient’s ASD symptoms. Providing support to address these needs, particularly those relating to the child’s mood disorders, communication, social needs, safety, and daytime activities, may be the domains of support that most effectively reduce the caregiver burden in this population.⁶⁶

Caregiver positivity, lower stress levels, and increased social support, particularly in the form of friends and family members providing no-cost assistance to caregivers whose children do not live independently,⁷⁴ have been linked to better outcomes for caregivers.^70,74,75 Rigorous studies that examine caregiver burden as individuals with ASD enter mid- and late-adulthood are limited.

THE ROLE OF THE INTERNIST IN CARING FOR ADULTS WITH AUTISM

A major challenge for many adults with ASD is the transition from services provided during childhood to those provided in adulthood. While children with autism have subspecialty providers who diagnose and manage their condition, including developmental-behavioral pediatricians, pediatric neurologists, and child psychiatrists, adults with autism may have fewer options.

Autism centers are becoming more available across the nation, and many provide care across the life span. However, depending on a patient’s needs, the primary care provider may need to manage residual symptoms as the patient transitions from pediatric to adult care, ultimately deciding when and where to refer the patient.

The patient’s family should pay close attention to function and mood around the time the patient leaves the structure of high school, and they should build rapport with a primary care provider they can turn to if problems persist or arise. Referrals for behavioral therapy and for social work, job training, and vocational support can greatly benefit patients as they transition to young adulthood. Referrals and suggestions for social support can also help caregivers.

Medical care

Deciding when and how to medicate the patient for symptoms of autism and related behaviors necessitates consideration of the patient’s impairment, side effects of the medication, and the impact medications may have on the patient’s other conditions. Disordered eating, mood problems, anxiety, and attention-deficit/hyperactivity disorder should be considered, and, as in all patients, regular screenings of mental health status should be conducted.^76,77

Comorbid medical conditions may cause worsening of a patient’s known behavioral symptoms or may precipitate new behaviors or aggression as a result of pain or discomfort, particularly in patients with limited speech. A change in stereotypes or increased irritability warrants a thoughtful investigation for a cause other than ASD before adding or increasing behavioral medications. Common comorbid conditions include gastrointestinal distress, most commonly constipation and diarrhea in an idiopathic ASD population, with increasing ASD symptom severity correlating with increased odds of a gastrointestinal problem.⁷⁸ Allergies, sleep disorders, seizures, and other psychiatric conditions are also frequent.⁷⁹

Preventive care, including vaccinations, should be given as scheduled. Caregivers and patients can be reminded if needed that vaccines do not cause or worsen autism, and vaccination is intended to improve the safety of the patient and those around them, protecting against potentially life-threatening disease. Regular dental care visits, particularly for patients who are using medications that may affect tooth or gingival health,⁸⁰ and regular visits to an optometrist or ophthalmologist for screening of vision are also advised.

Adverse effects. Weight gain and metabolic syndrome are common adverse effects of medications used for behavioral management, and the primary care physician may uncover diabetes, cardiac disorders, and hyperlipidemia. Patients with ASD may be particularly sensitive to the effects of medications and therefore may require a lower dose or a slower titration than other patients. Working with a behavioral team, careful weaning of psychiatric medications to the minimum needed is strongly recommended whenever possible.⁸¹

TAKE-HOME POINTS

As more adults with autism enter society, they may require varying levels of support from the healthcare community to ensure that therapeutic gains from childhood persist, allowing them to achieve maximal functional potential.

Adults with ASD may have a high, normal, or low IQ and intellectual capability. Knowledge of this and of the patient’s symptom severity and presence of comorbid psychiatric and other health conditions can help the clinician guide the patient to appropriate social services and pharmacologic treatments.

Individualized support in the workplace, as well as education regarding sexual health, can help improve outcomes for affected individuals.

Caregiver burden for individuals with autism can be high, but it can be mitigated by social support.

Further research regarding appropriate diagnostic instruments in adulthood and appropriate treatments for impairing autism-related symptoms across the life span may be particularly helpful in supporting this patient population.

Autism spectrum disorder (ASD) has increased significantly over the past 40 years. Even in the past 2 decades, the prevalence increased from 6.7 per 1,000 in 2000¹ to 14.6 per 1,000 in 2012—1 in 59 people.² Of those with ASD, 46% have an intelligence quotient (IQ) greater than 85, meaning they are of average or above-average intelligence.¹

See related editorial

As more children with autism become adults, understanding this condition across the life span grows paramount. While many studies have focused on understanding how diagnosis and treatment can help young children, few have focused on adults with autism and how primary care teams can better assist these individuals. However, this is changing, with studies of the benefits of employment programs and pharmacologic treatment, and reproductive health needs of adults with ASD. Here we provide an updated review of ASD in adult patients.

NO MORE ASPERGER SYNDROME— IT’S ON THE SPECTRUM NOW

As the scientific understanding of autism has expanded, revisions in the Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-5),³ published in 2013, have paralleled these advances. For many adult patients with autism who were evaluated as children, these revisions have led to changes in diagnosis and available services.

In the previous edition (DSM-IV-TR, published in 2000),⁴ autistic disorder and Asperger syndrome were separate (Table 1). However, DSM-5 lumped autistic disorder and Asperger disorder together under the diagnosis of ASD; this leaves it to the clinician to specify whether the patient with ASD has accompanying intellectual or language impairment and to assign a level of severity based on communication deficits and restrictive behaviors.

The shift in diagnosis was worrisome for some, particularly for clinicians treating patients with DSM-IV Asperger syndrome, who lost this diagnostic label. Concerns that patients with Asperger syndrome may not meet the DSM-5 criteria for ASD were validated by a systematic review showing that only 50% to 75% of patients with DSM-IV autistic disorder, Asperger syndrome, or pervasive developmental disorder not otherwise specified (PDD-NOS) met the DSM-5 criteria for ASD.⁵ Most of those who no longer met the criteria for ASD carried a DSM-IV diagnosis of Asperger syndrome or PDD-NOS or had an IQ over 70.⁵ Nevertheless, these individuals may struggle with impairing symptoms related to repetitive behaviors or communication or may be affected by learning or social-emotional disabilities. Additionally, even if they meet the criteria for ASD, some may identify with the Asperger syndrome label and fear they will be stigmatized should they be classified as having the more general ASD.^6,7

Although future revisions to the DSM may include further changes in classification, grouping adults with ASD according to their functional and cognitive ability may allow for pragmatic characterization of their needs. At least 3 informal groupings of autistic adults have been described that integrate cognitive ability and independence⁸:

• Those with low cognitive and social abilities, who need lifelong support
• Those with midrange cognitive and social limitations but who can complete their work in special education classes; they often find employment in supervised workshops or other work with repetitive tasks
• Those who have greater cognitive ability and some social skills; they may proceed to college and employment and live independently.

UNCERTAIN PROGNOSIS

Prognostication for people with ASD remains an area of research. Some adults experience a reduction in symptoms as they age, with significant improvements in speech and, sometimes, modest improvements in restrictive and repetitive behaviors.^9,10

Nevertheless, autism remains a lifelong disorder for many. Adults may still require significant support and may experience impairment, particularly in social interaction.¹⁰ In longitudinal studies, only 15% to 27% of patients with ASD are characterized as having a positive outcome (often defined as variables related to independent function, near-normal relationships, employment, or a quantified reduction in core symptoms), and many experience significant dependency into adulthood.^10–13

IQ has been cited as a possible prognostic factor,^10,13 with an IQ below 70 associated with poorer outcome, although an IQ above 70 does not necessarily confer a positive outcome. Less-severe impairment in speech at baseline in early childhood also suggests better outcomes in adulthood.¹⁰

As we see more adults with autism, studies that include both children and adults, such as the Longitudinal European Autism Cohort, will be important to characterize the natural history, comorbidities, and genetics of ASD and may help provide more specific predictors of disease course into adulthood.¹⁴

While many patients are recognized as having autism in early to mid-childhood, some adults may not receive a formal diagnosis until much later in life. Those with fluent language and normal-range IQ are likely to be overlooked.¹⁵ People with ASD may have had mild symptoms during childhood that did not impair their functioning until demands of daily life exceeded their capacities in adulthood. Alternatively, parents of a child with newly diagnosed ASD may realize that they themselves or another adult family member also show signs of it.

The UK National Institute of Health and Care Excellence suggests that assessment should be considered if the patient meets psychiatric diagnostic criteria and one of the following:

• Difficulty obtaining or sustaining employment or education
• Difficulty initiating or sustaining social relationships
• Past or current contact with mental health or learning disability services
• History of a neurodevelopmental or mental health disorder.^15,16

Currently, diagnosis typically involves a multidisciplinary approach, with psychiatric assessment, neuropsychological testing, and speech and language evaluation.¹⁷ Providers may need to refer patients for these services, sometimes at the patient’s request, if previous mental health misdiagnoses are suspected, if patients report symptoms or impairment consistent with ASD, or if benefits, services, or accommodations, such as a coach in the workplace, are needed.

Diagnosing ASD in adults can be difficult, given that the gold-standard diagnostic tests such as the Autism Diagnostic Observation Schedule-2 (ADOS-2)¹⁸ and the Autism Diagnostic Interview-Revised (ADI-R)¹⁹ are typically used to diagnose autism in children. However, Module 4 in the ADOS-2 was developed for adolescents and older patients with fluent language and has shown at least moderate power to distinguish adults with ASD from those without ASD.^18,20

An initial psychiatric assessment should include a thorough history taken from the patient and, if applicable, the patient’s caregiver, as well as a psychiatric interview of the patient. Neuropsychological testing should include evaluation of cognitive function, social functioning (using the ADOS-2 for adults without intellectual disability, the ADI-R, or both), and adaptive functioning (using the Vineland Adaptive Behavior Scales, second edition²¹).

Evaluation of speech and language is particularly important in patients with limited language ability and should include both expressive and receptive language abilities. Serial testing every few years, as is often recommended in childhood, may help establish the pattern of impairment over time.

Comorbid psychiatric disorders are common

Many people with ASD also have other psychiatric disorders,^17,22 which clinicians should keep in mind when seeing an adult seeking evaluation for ASD.

Attention-deficit/hyperactivity disorder is present at higher rates in patients of average intellectual function with ASD than in the general population.²³

Anxiety disorders, including obsessive-compulsive disorder, were found to often coexist with autism in a sample of adults with autism without intellectual disability,^24,25 and approximately 40% of youths with ASD have at least 1 comorbid anxiety disorder.²⁶

Mood disorders are also prevalent in adults with ASD, with a small study showing that 70% of adults with DSM-IV Asperger syndrome had at least 1 depressive episode in their lifetime.²⁷

BEHAVIORAL AND PHARMACOLOGIC THERAPIES FOR THE ADULT PATIENT

Services and medications for adults with ASD are discussed below. These will vary by individual, and services available may vary by region.

Historically, vocational and social outcomes have been poor for adults with ASD. It is estimated that most larger universities may be home to 100 to 300 students with ASD. To combat isolation, the University of California, Los Angeles, the University of Alabama, and others provide special support services, including group social activities such as board games and individual coaching.⁸ Nevertheless, half of the students with autism who attend institutions of higher learning leave without completing their intended degree.²⁹ Many still struggle to establish meaningful friendships or romantic relationships.²⁹

Planning for a transition of care

Healthcare transition planning is important  but is strikingly underused.³⁰ Individual providers, including adult psychiatrists, vary in their level of training and comfort in diagnosing, treating, and monitoring adults with autism. Youths with ASD are half as likely to receive healthcare transition services as other youths with special healthcare needs.³¹

Pediatric providers, including pediatric psychiatrists, developmental behavioral specialists, and pediatric neurologists, may be best equipped to treat young adult patients or to refer patients to appropriate generalists and specialists comfortable with autism-specific transition of care. The question of eligibility for services is important to patients and families during the transition period, with many parents and professionals unaware of services available to them.³² Receiving adequate transition services is enabled by having a medical home during childhood—that is, a comprehensive, centralized medical record, culturally competent care, interaction with schools, and patient access to clear, unbiased information.³¹

Ideally, in our experience, transitioning should be discussed well before the child ages out of the pediatric provider’s practice. If necessary, healthcare transition services should include 4 components:

• Discussing the switch to a new physician who treats adults
• Discussing changing healthcare needs as an adult
• Planning insurance coverage as an adult
• Encouragement by the physician for the child to take age-appropriate responsibility for his or her healthcare.^31,33

Tools such as the Got Transition checklist from the National Health Care Transition Center can provide support during this process.³⁴

Other services

Other services provided as an extension or adjunct to the medical home in early adulthood may include customized vocational or employment training, specialized mentorship or support in a college setting, housing support, and psychological services.³⁵

Community-based programs that emphasize leisure have been shown to improve participants’ independence and quality of life.³⁶ Similarly, participants in programs that emphasized supported employment, with a job coach, on-the-job support, collaboration with the participant’s larger social support network, and selection of tasks to match an individual’s abilities and strengths, demonstrated improved cognitive performance, particularly executive functioning,³⁷ and employment.^38,39 These programs work best for patients who have mild to moderate symptoms.^37,39

Patients with symptoms that are more severe may do better in a residential program. Many of these programs maintain an emphasis on vocational and social skills development. One such long-standing program is Bittersweet Farms, a rural farming community in Ohio for adults with ASD, where individuals with moderate to low function live in a group setting, with emphasis on scheduled, meaningful work including horticulture, animal care, carpentry; and activities of daily living.⁴⁰

Studies of patients across the autism spectrum have generally found better outcomes when vocational support is given, but larger and randomized studies are needed to characterize how to best support these individuals after they leave high school.⁴¹

Psychological services such as applied behavioral therapy, social cognition training, cognitive behavioral therapy, and mindfulness training may be particularly useful in adults.^42–44

Some versions of applied behavioral therapy, such as the Early Start Denver Model,⁴⁵ have been found to be cost-effective and offset some expenses in the care of children with autism, using play-based and relationship-based interventions to promote development across domains while reducing symptoms.

In randomized controlled trials, modified cognitive behavioral therapy⁴³ and mindfulness⁴⁴ were shown to reduce symptoms of anxiety, obsessive-compulsive disorder, and depression.

Dialectical behavior therapy, used to find a balance between accepting oneself and desiring to change, may help in some circumstances to regulate emotions and reduce reactivity and lability, although large randomized clinical trials have not been conducted in the ASD population.⁴⁶

Drug therapy

Medications may be appropriate to manage symptoms or comorbid conditions in adults with ASD. Over 75% adults with ASD have been found to use psychotropic medications.⁴⁷ However, although these drugs have been approved for treating behaviors commonly associated with ASD, none of them provide definitive treatment for this disorder, and they have not been rigorously tested or approved for use in adults with ASD.⁴⁸

Irritability and aggression associated with ASD can be treated with risperidone (approved for children over age 5), aripiprazole (approved for children ages 6–17), clozapine, or haloperidol.⁴⁹

Aberrant social behavior can be treated with risperidone.⁵⁰ Treatments under investigation include oxytocin and secretin.⁴⁹

While no approved drug has been shown to improve social communication,⁵¹ balovaptan, a vasopressin V1a agonist, has shown potential and has been granted breakthrough status by the US Food and Drug Administration for treating challenging behaviors in adults, with additional studies ongoing in children.^52,53

Repetitive behaviors, if the patient finds them impairing, can be managed with selective serotonin reuptake inhibitors.⁴⁹

Much more study of drug therapy in adults with ASD is needed to fully understand the best approaches to psychotropic medication use, including appropriate classes and effective dosage, in this population.

SEX: UNEXPLORED TERRITORY

The reproductive health needs of people with autism remain largely underexplored.⁵⁴ Historically, individuals with ASD were thought to have little interest in sexual activity or parenthood, owing to the nature of the core symptoms of the disorder. This has been shown to be untrue, particularly as studies on this topic began to engage in direct interviews with people with ASD, rather than solely gathering information from caregivers or parents. The findings reinforce the importance of broaching this component of health in this population, for the following reasons:

Adults with ASD are at increased risk of sexual victimization, with nearly 4 out of 5 reporting unwanted sexual advances, coercion, or rape.⁵⁵

They have a smaller pool of knowledge with respect to sexual health. They report⁵⁶ that they learned about sex from television and from “making mistakes.” They use fewer sources. They are less likely to speak to peers and figures of authority to gain knowledge about sexually transmitted infections, sexual behaviors, and contraception. And they are more likely to use forms of nonsocial media, such as television, for information.⁵⁵

They report more concerns about the future with respect to sexual behavior, suggesting the need for targeted sexual education programs.⁵⁶

College-age young adults with ASD who misread communication may be particularly affected by Title IX, which requires schools to promptly investigate reports of sexual harassment and sexual assault, should they struggle to comport themselves appropriately.⁵⁷ Early and frank conversations about issues of consent and appropriate displays of interest and affection may better equip youth to navigate new social scenarios as they plan to leave a supervised home environment for college or the workforce.

Gender identification: Male, female, other

In one study, 77.8% of birth-sex males with ASD said they identified as men, and 67.1% of birth-sex females identified as women,  compared with 93.1% of birth-sex males and 87.3% of birth-sex females without ASD. Many of the remaining individuals with ASD reported a transgender, genderqueer, or other gender identity.⁵⁸ Some studies have found females with ASD report a gay or bisexual orientation more often than males with ASD.^59–61

Adolescents and young adults may be exploring their changing bodies, sexual preferences, and gender roles, and as for all people at this age, these roles emerge against a backdrop of familial and societal expectations that may or may not be concordant with their own projected path regarding sexuality and reproductive health.⁶²

Having the conversation

As with non-ASD patients, a thorough sexual history should be collected via open-ended questions when possible to determine types of sexual activity and partners.

Education of the patient, alongside caregivers and parents, about healthy and safe sexual practices, screening for sexual violence, and hormonal and nonhormonal contraception options are important components of care for this population.

CAREGIVER STRESS MAY PERSIST INTO PATIENT’S ADULTHOOD

Caregiver burden is a monumental concern for parents or others who may have lifelong primary responsibility for these neurodiverse adults.⁶³ Family members may feel isolated and may feel they have encountered many barriers to services.⁶⁴ Remaining sensitive, knowledgeable, and inquisitive about the types of support that are needed may help forge a trusting relationship between the provider and the family.

Parents of children with ASD have been reported to experience worse physical and emotional health than parents whose children do not have developmental disabilities.^63,65 These disparities have been found to persist  as their children enter adolescence and young adulthood.^66,67 Parents of children with ASD report more anxiety, depression, and distress compared with parents of children without ASD,⁶³ and parents themselves may be affected by ASD symptoms, which has been linked to increased parenting stress.⁶⁸ Some studies have found blunted cortisol responses,^63,69,70 and some,⁷¹ but not all,⁶³ have found elevated blood pressure in caregivers of children with developmental disabilities. Headache, backache, muscle soreness, and fatigue may also be commonly reported.⁶⁷

In our experience, caregivers are tremendously appreciative when provided connections to adult ASD services and support systems as their child ages. The school system and other formal support systems often assist until the time of transition into adulthood. This transition can be stressful for the adolescent and family alike, and informal support systems such as friends and family may become increasingly crucial, particularly if the adolescent still lives at home.^72,73

The affected young adult’s unmet needs, as perceived by the caregiver, have been found to be significantly associated with caregiver burden, whereas the severity of the adult patient’s ASD symptoms has not.⁶⁶ Therefore, it may be helpful to ask caregivers whether they perceive any unmet needs, regardless of the clinician’s perception of the severity of the patient’s ASD symptoms. Providing support to address these needs, particularly those relating to the child’s mood disorders, communication, social needs, safety, and daytime activities, may be the domains of support that most effectively reduce the caregiver burden in this population.⁶⁶

Caregiver positivity, lower stress levels, and increased social support, particularly in the form of friends and family members providing no-cost assistance to caregivers whose children do not live independently,⁷⁴ have been linked to better outcomes for caregivers.^70,74,75 Rigorous studies that examine caregiver burden as individuals with ASD enter mid- and late-adulthood are limited.

THE ROLE OF THE INTERNIST IN CARING FOR ADULTS WITH AUTISM

A major challenge for many adults with ASD is the transition from services provided during childhood to those provided in adulthood. While children with autism have subspecialty providers who diagnose and manage their condition, including developmental-behavioral pediatricians, pediatric neurologists, and child psychiatrists, adults with autism may have fewer options.

Autism centers are becoming more available across the nation, and many provide care across the life span. However, depending on a patient’s needs, the primary care provider may need to manage residual symptoms as the patient transitions from pediatric to adult care, ultimately deciding when and where to refer the patient.

The patient’s family should pay close attention to function and mood around the time the patient leaves the structure of high school, and they should build rapport with a primary care provider they can turn to if problems persist or arise. Referrals for behavioral therapy and for social work, job training, and vocational support can greatly benefit patients as they transition to young adulthood. Referrals and suggestions for social support can also help caregivers.

Medical care

Deciding when and how to medicate the patient for symptoms of autism and related behaviors necessitates consideration of the patient’s impairment, side effects of the medication, and the impact medications may have on the patient’s other conditions. Disordered eating, mood problems, anxiety, and attention-deficit/hyperactivity disorder should be considered, and, as in all patients, regular screenings of mental health status should be conducted.^76,77

Comorbid medical conditions may cause worsening of a patient’s known behavioral symptoms or may precipitate new behaviors or aggression as a result of pain or discomfort, particularly in patients with limited speech. A change in stereotypes or increased irritability warrants a thoughtful investigation for a cause other than ASD before adding or increasing behavioral medications. Common comorbid conditions include gastrointestinal distress, most commonly constipation and diarrhea in an idiopathic ASD population, with increasing ASD symptom severity correlating with increased odds of a gastrointestinal problem.⁷⁸ Allergies, sleep disorders, seizures, and other psychiatric conditions are also frequent.⁷⁹

Preventive care, including vaccinations, should be given as scheduled. Caregivers and patients can be reminded if needed that vaccines do not cause or worsen autism, and vaccination is intended to improve the safety of the patient and those around them, protecting against potentially life-threatening disease. Regular dental care visits, particularly for patients who are using medications that may affect tooth or gingival health,⁸⁰ and regular visits to an optometrist or ophthalmologist for screening of vision are also advised.

Adverse effects. Weight gain and metabolic syndrome are common adverse effects of medications used for behavioral management, and the primary care physician may uncover diabetes, cardiac disorders, and hyperlipidemia. Patients with ASD may be particularly sensitive to the effects of medications and therefore may require a lower dose or a slower titration than other patients. Working with a behavioral team, careful weaning of psychiatric medications to the minimum needed is strongly recommended whenever possible.⁸¹

TAKE-HOME POINTS

As more adults with autism enter society, they may require varying levels of support from the healthcare community to ensure that therapeutic gains from childhood persist, allowing them to achieve maximal functional potential.

Adults with ASD may have a high, normal, or low IQ and intellectual capability. Knowledge of this and of the patient’s symptom severity and presence of comorbid psychiatric and other health conditions can help the clinician guide the patient to appropriate social services and pharmacologic treatments.

Individualized support in the workplace, as well as education regarding sexual health, can help improve outcomes for affected individuals.

Caregiver burden for individuals with autism can be high, but it can be mitigated by social support.

Further research regarding appropriate diagnostic instruments in adulthood and appropriate treatments for impairing autism-related symptoms across the life span may be particularly helpful in supporting this patient population.

Autism spectrum disorder (ASD) is a neurodevelopmental condition typically diagnosed early in life: the median age at diagnosis is 52 months.¹ Because research demonstrates the benefits of early intervention,² when we think about people with ASD, we generally think about children and adolescents. 

See related article

However, autism spans the entirety of one’s life. This means that children with ASD will grow to be adults with ASD. The US Centers for Disease Control and Prevention estimated that 1 in 59 children were diagnosed with ASD during the surveillance year 2014,¹ which was nearly double the prevalence from just 8 years earlier,³ and a 15% increase since 2012.⁴ As these children grow up, this translates to an ever-growing number of adults with autism.

UNMET NEEDS

Healthcare, housing, and intellectual and developmental disability services for adults with ASD currently fall well short of meeting the needs of this exploding population. If solutions are to be realized, innovative approaches must be employed.

Swetlik et al,⁵ in this issue of the Journal, offer valuable insights into the challenges that practitioners and their adult patients with ASD encounter as a result of seismic shifts in diagnostic criteria, increasing prevalence, and changes to healthcare financial coverage. They also review behavioral and pharmacologic treatments, reproductive health, and caregiver fatigue and discuss the role of the physician and other healthcare practitioners who are likely to have only limited exposure to adult patients with ASD. These wide-ranging considerations speak to the complexity of the healthcare needs of this population.

Swetlik et al also underscore that transition planning is essential for primary care, psychiatry, behavioral health services, continuing education, skill development, and appropriate prevocational training for adolescents with ASD, and yet it is often underutilized or unavailable. There is a dearth of experienced practitioners across these disciplines to serve adults with ASD. The complexity of navigating bureaucratic processes to secure funding (typically Medicaid) supports the necessity of planning early to achieve desired outcomes for each young adult. Additionally, the number of Medicaid waivers that fund many supportive services are limited.

GROWING UP IS HARD; START PLANNING EARLY

Swetlik et al describe the stress these circumstances create for people with ASD and their families. Entering adulthood is a complicated process, fraught with emotional overtones that must include medical care, work considerations, legal and financial arrangements, and, for many, the search for an appropriate residential environment. Planning for these transitions should begin years before adulthood if the process is to work smoothly and effectively.

A transition involving a shift away from a team of familiar pediatric healthcare providers to unfamiliar adult practitioners can be distressing for any adolescent with a chronic condition. For those with ASD, who may have diminished socialization and communication skills, the transition can be especially challenging and must be handled with care.

This transition pales in comparison with the disruptive force of a permanent move out of the family home. Over the next 10 years, 500,000 youths in the United States will age out of school-based ASD services,⁶ and a great many of them will be put on long waiting lists for residential placement.⁷

For young adults with ASD, particularly those with complex needs, establishing an advantageous long-term living arrangement may mean the difference between a healthy, self-directed launch into a new phase of life, or a consequential misstep that exacerbates or worsens symptoms and creates new stressors for the young adult and his or her family. It is especially important that arrangements be made before an aging guardian starts to experience declining health.

Thoughtful and deliberate preplanning helps to reduce stress and prevent emergency placements, and promotes long-term quality of life for people with ASD.

For many years, the prevailing model for the provision of long-term care services for individuals with intellectual and developmental disabilities was institutional care. Large facilities, often located in expansive, self-contained campuses, provided around-the-clock care. Residents slept, ate, worked, and were expected to receive social and emotional fulfillment at the facility.

For some, this was an acceptable model. For many, it was not, but there were few available alternatives. At its best, this model provided a safe environment for its residents, but it did not facilitate achieving an integrated, self-directed life experience. At its worst, neglect and abuse were rampant.

Numerous legislative acts, court decisions, and advocacy efforts drove the deinstitutionalization movement for individuals with intellectual and developmental disabilities between the early 1960s and today. The 1999 case of Olmstead v LC⁸ was among the most significant. In this landmark case, in accordance with the 1990 Americans With Disabilities Act, the US Supreme Court ruled that people with disabilities have the right to receive state-funded services and support in the community rather than in institutions, as long as several criteria are met:

• Community supports are appropriate
• The individual desires to live in the community
• The accommodations to facilitate that arrangement are considered to be reasonable.

In the 20 years since the Olmstead decision, residential services for adults have shifted at an accelerated rate away from institutions toward smaller, community-based settings.^9,10 Community models include but are not limited to:

• Group homes that serve individuals with intellectual and developmental disabilities and provide 24-hour support
• Apartments or homes where individuals live and receive intermittent, less-intensive support
• Adult foster care.

DSM-5: AUTISM IS HETEROGENEOUS

In the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5),¹¹ ASD is characterized by persistent deficits in social interaction and social communication, which begin in early development and are observed in conjunction with restricted, repetitive behaviors, interests, or activities.

DSM-5 provides more than 20 examples of how these criteria might be met. Further, DSM-5 encourages clinicians to select diagnostic specifiers to address overall symptom severity, cognitive abilities, and associated medical conditions.

ONE RESIDENTIAL MODEL DOES NOT FIT ALL

The complex matrix of potential symptom manifestations in people with ASD clearly indicates the need for numerous distinctive residential models for adults with ASD.

One person with severe symptoms of ASD may require one-to-one staffing and proactive preparatory support in order to safely leave the house for a desired social experience. The person may be unable to read, to independently access public transportation, to cope with deviations in expected routine, to initiate conversation, or to remain calm if distressed. This person would benefit from a residential model that allows for a high staffing ratio, access to appropriate transportation, sophisticated autism-informed supports, and the availability of social experiences that are easily accessed—in other words, a very controlled environment.

Another person, with less severe symptoms and fewer behavioral challenges, who possesses a driver’s license and holds a job, may struggle with isolation and loneliness resulting from social inhibitions and skill deficits. This person’s support needs would differ, with emphasis placed on maintaining the appropriate social context rather than on providing a high level of individualized behavioral support.

The shift away from a one-size-fits-all institutional model for long-term care has benefited many individuals with intellectual and developmental disabilities who have experienced opportunities for community integration.

Still, for many adults with ASD, particularly those with complex needs and complex behavior profiles, the widespread conceptual shift to new and different models that assume that all people with intellectual and developmental disabilities will benefit from smaller, scattered-site settings is ill-fitting. It is erroneous to believe that for all adults with ASD, regardless of the complexity of their symptoms, living within a broader community of neurotypically developing neighbors breeds a richer sense of inclusion and connectivity.

FINDING CARE CAN BE DAUNTING

Families of adults with severe symptoms of ASD who seek placement in more traditional community residential models often find it difficult to find capable healthcare providers to serve them. Such settings are ill-equipped to deal with significantly challenging behaviors such as physical aggression, self-injury, property destruction, and elopement (wandering). These supported housing models lack the necessary staffing resources.

Further, publicly available funding options for stand-alone group homes do not typically allow for intensive supervision and management from professionals with expertise in autism. Without specialists who can  implement autism-specific best-practice methods for assessment, service planning, staff training, data collection, and the provision of visual and technological supports for residents, it is difficult to achieve desired outcomes. For example, patients can find it challenging to visit physicians’ offices for preventive and urgent care. Lacking a caregiver who is familiar with the adult patient with ASD and who can help express his or her concerns to healthcare providers, efficient evaluation of any potentially serious medical issue is a daunting task.

A residential model that is gaining popularity across the United States among families and individuals affected by ASD is the intentional community.

Although forms and functions may vary, intentional communities are planned residential developments that promote social cohesion and strive to meet the shared needs of its members. Intentional communities for adults with ASD are designed to meet their social, communication, sensory, and behavioral needs. Every detail from the selection of land, to the construction of housing, the selected staffing model, the daily structure, and the considerations for transportation and amenities are all informed by the specific needs of individuals with autism. Safety, integration, self-direction, independence, and social connectivity are common goals.   

Successful intentional communities designed for people with intellectual and developmental disabilities often have facilities devoted to recreation, continuing education, socialization, and supportive services. Staff members who work within these communities are highly trained in the unique needs of people with these disorders. Intentional communities aspire to embody the individualized, integrated community-living approach that the Olmstead decision called for, while simultaneously offering the resource-rich, safe, and supportive experience that a campus atmosphere can offer.

Almost all recently developed models allow for residents to live among neurotypical peers and have easy access to the broader community. Communities range in size from several condominiums on a cul-de-sac to expansive developments with more than a hundred homes.

The allure of an ASD-informed intentional community that provides for the social, vocational, health, and safety needs of its residents is similar to that which leads large numbers of aging, neurotypically developing individuals to seek out retirement communities. Nationally recognized models of intentional communities include First Place (Phoenix, AZ), Sweetwater Spectrum (Sonoma, CA), Cape Cod Village (Orleans, MA), and Bittersweet Farms in Ohio.

First Place is a 55-unit apartment complex near downtown Phoenix that identifies as “community-connected” and “transit-oriented.” Although there are some individuals in the complex who do not have ASD, the development was created for those who do. The goal is to enhance the quality of life for residents through the provision of housing, jobs, social opportunities, and a supportive community.

Sweetwater Spectrum is located blocks from the Sonoma downtown plaza, on just under 3 acres of land. It includes several 4-bedroom homes, a community center with a kitchen, exercise studio, media room, and library, an expansive organic garden, and an outdoor pool.

The Autism Housing Network lists more than 75 intentional communities on its resource page. There are many exciting models in development. For example, Monarch Center for Autism in Cleveland, OH, is planning to develop an innovative intentional community. It will include mixed supported living options for adults across the autism spectrum, separate housing options for parents and family members, on-site social and recreational opportunities, green space, and retail stores intended to serve members of the surrounding community and provide employment and socialization opportunities for its residents.

Casa Familia in South Florida will soon begin constructing a large intentional community that will include innovative housing options, classrooms, social areas, an auditorium, walkways, bike paths, pools, and social enterprises.

It is critical that these ASD intentional communities continue to emerge to meet the long-term needs of the rapidly growing and aging ASD population. 

THE TIME TO ACT IS NOW

Swetlik et al synthesize important, contemporary research on adult ASD healthcare considerations, pursuant to informing the many decisions that physicians and other healthcare professionals must make to address the diverse needs of this population. Their article advocates for further research and highlights the crisis surrounding the scarcity of practitioners specializing in adult ASD.

As for current healthcare providers, parents, care coordinators, and other stakeholders who are tasked with transition planning for individuals with ASD, particularly those with severe symptoms, the time to act is now, especially in creating new intentional community models.

Most adult healthcare providers have not been routinely charged with the responsibility, nor do they have the available time and resources to meet the social and communication needs of these patients. But when faced with an ever-expanding group of patients who demonstrate inadequate social and communication skills, the healthcare system must not turn a blind eye.

The symptoms of autism do not magically resolve when a child reaches adulthood. The medical community must partner with society at large to offer transitional solutions, including intentional communities, to the rapidly growing number of adults with ASD. Current demand outweighs supply, but if we work together, we can create innovative and highly effective solutions. After all, children with autism do not disappear. They grow into adults with autism.

Autism spectrum disorder (ASD) is a neurodevelopmental condition typically diagnosed early in life: the median age at diagnosis is 52 months.¹ Because research demonstrates the benefits of early intervention,² when we think about people with ASD, we generally think about children and adolescents. 

See related article

However, autism spans the entirety of one’s life. This means that children with ASD will grow to be adults with ASD. The US Centers for Disease Control and Prevention estimated that 1 in 59 children were diagnosed with ASD during the surveillance year 2014,¹ which was nearly double the prevalence from just 8 years earlier,³ and a 15% increase since 2012.⁴ As these children grow up, this translates to an ever-growing number of adults with autism.

UNMET NEEDS

Healthcare, housing, and intellectual and developmental disability services for adults with ASD currently fall well short of meeting the needs of this exploding population. If solutions are to be realized, innovative approaches must be employed.

Swetlik et al,⁵ in this issue of the Journal, offer valuable insights into the challenges that practitioners and their adult patients with ASD encounter as a result of seismic shifts in diagnostic criteria, increasing prevalence, and changes to healthcare financial coverage. They also review behavioral and pharmacologic treatments, reproductive health, and caregiver fatigue and discuss the role of the physician and other healthcare practitioners who are likely to have only limited exposure to adult patients with ASD. These wide-ranging considerations speak to the complexity of the healthcare needs of this population.

Swetlik et al also underscore that transition planning is essential for primary care, psychiatry, behavioral health services, continuing education, skill development, and appropriate prevocational training for adolescents with ASD, and yet it is often underutilized or unavailable. There is a dearth of experienced practitioners across these disciplines to serve adults with ASD. The complexity of navigating bureaucratic processes to secure funding (typically Medicaid) supports the necessity of planning early to achieve desired outcomes for each young adult. Additionally, the number of Medicaid waivers that fund many supportive services are limited.

GROWING UP IS HARD; START PLANNING EARLY

Swetlik et al describe the stress these circumstances create for people with ASD and their families. Entering adulthood is a complicated process, fraught with emotional overtones that must include medical care, work considerations, legal and financial arrangements, and, for many, the search for an appropriate residential environment. Planning for these transitions should begin years before adulthood if the process is to work smoothly and effectively.

A transition involving a shift away from a team of familiar pediatric healthcare providers to unfamiliar adult practitioners can be distressing for any adolescent with a chronic condition. For those with ASD, who may have diminished socialization and communication skills, the transition can be especially challenging and must be handled with care.

This transition pales in comparison with the disruptive force of a permanent move out of the family home. Over the next 10 years, 500,000 youths in the United States will age out of school-based ASD services,⁶ and a great many of them will be put on long waiting lists for residential placement.⁷

For young adults with ASD, particularly those with complex needs, establishing an advantageous long-term living arrangement may mean the difference between a healthy, self-directed launch into a new phase of life, or a consequential misstep that exacerbates or worsens symptoms and creates new stressors for the young adult and his or her family. It is especially important that arrangements be made before an aging guardian starts to experience declining health.

Thoughtful and deliberate preplanning helps to reduce stress and prevent emergency placements, and promotes long-term quality of life for people with ASD.

For many years, the prevailing model for the provision of long-term care services for individuals with intellectual and developmental disabilities was institutional care. Large facilities, often located in expansive, self-contained campuses, provided around-the-clock care. Residents slept, ate, worked, and were expected to receive social and emotional fulfillment at the facility.

For some, this was an acceptable model. For many, it was not, but there were few available alternatives. At its best, this model provided a safe environment for its residents, but it did not facilitate achieving an integrated, self-directed life experience. At its worst, neglect and abuse were rampant.

Numerous legislative acts, court decisions, and advocacy efforts drove the deinstitutionalization movement for individuals with intellectual and developmental disabilities between the early 1960s and today. The 1999 case of Olmstead v LC⁸ was among the most significant. In this landmark case, in accordance with the 1990 Americans With Disabilities Act, the US Supreme Court ruled that people with disabilities have the right to receive state-funded services and support in the community rather than in institutions, as long as several criteria are met:

• Community supports are appropriate
• The individual desires to live in the community
• The accommodations to facilitate that arrangement are considered to be reasonable.

In the 20 years since the Olmstead decision, residential services for adults have shifted at an accelerated rate away from institutions toward smaller, community-based settings.^9,10 Community models include but are not limited to:

• Group homes that serve individuals with intellectual and developmental disabilities and provide 24-hour support
• Apartments or homes where individuals live and receive intermittent, less-intensive support
• Adult foster care.

DSM-5: AUTISM IS HETEROGENEOUS

In the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5),¹¹ ASD is characterized by persistent deficits in social interaction and social communication, which begin in early development and are observed in conjunction with restricted, repetitive behaviors, interests, or activities.

DSM-5 provides more than 20 examples of how these criteria might be met. Further, DSM-5 encourages clinicians to select diagnostic specifiers to address overall symptom severity, cognitive abilities, and associated medical conditions.

ONE RESIDENTIAL MODEL DOES NOT FIT ALL

The complex matrix of potential symptom manifestations in people with ASD clearly indicates the need for numerous distinctive residential models for adults with ASD.

One person with severe symptoms of ASD may require one-to-one staffing and proactive preparatory support in order to safely leave the house for a desired social experience. The person may be unable to read, to independently access public transportation, to cope with deviations in expected routine, to initiate conversation, or to remain calm if distressed. This person would benefit from a residential model that allows for a high staffing ratio, access to appropriate transportation, sophisticated autism-informed supports, and the availability of social experiences that are easily accessed—in other words, a very controlled environment.

Another person, with less severe symptoms and fewer behavioral challenges, who possesses a driver’s license and holds a job, may struggle with isolation and loneliness resulting from social inhibitions and skill deficits. This person’s support needs would differ, with emphasis placed on maintaining the appropriate social context rather than on providing a high level of individualized behavioral support.

The shift away from a one-size-fits-all institutional model for long-term care has benefited many individuals with intellectual and developmental disabilities who have experienced opportunities for community integration.

Still, for many adults with ASD, particularly those with complex needs and complex behavior profiles, the widespread conceptual shift to new and different models that assume that all people with intellectual and developmental disabilities will benefit from smaller, scattered-site settings is ill-fitting. It is erroneous to believe that for all adults with ASD, regardless of the complexity of their symptoms, living within a broader community of neurotypically developing neighbors breeds a richer sense of inclusion and connectivity.

FINDING CARE CAN BE DAUNTING

Families of adults with severe symptoms of ASD who seek placement in more traditional community residential models often find it difficult to find capable healthcare providers to serve them. Such settings are ill-equipped to deal with significantly challenging behaviors such as physical aggression, self-injury, property destruction, and elopement (wandering). These supported housing models lack the necessary staffing resources.

Further, publicly available funding options for stand-alone group homes do not typically allow for intensive supervision and management from professionals with expertise in autism. Without specialists who can  implement autism-specific best-practice methods for assessment, service planning, staff training, data collection, and the provision of visual and technological supports for residents, it is difficult to achieve desired outcomes. For example, patients can find it challenging to visit physicians’ offices for preventive and urgent care. Lacking a caregiver who is familiar with the adult patient with ASD and who can help express his or her concerns to healthcare providers, efficient evaluation of any potentially serious medical issue is a daunting task.

A residential model that is gaining popularity across the United States among families and individuals affected by ASD is the intentional community.

Although forms and functions may vary, intentional communities are planned residential developments that promote social cohesion and strive to meet the shared needs of its members. Intentional communities for adults with ASD are designed to meet their social, communication, sensory, and behavioral needs. Every detail from the selection of land, to the construction of housing, the selected staffing model, the daily structure, and the considerations for transportation and amenities are all informed by the specific needs of individuals with autism. Safety, integration, self-direction, independence, and social connectivity are common goals.   

Successful intentional communities designed for people with intellectual and developmental disabilities often have facilities devoted to recreation, continuing education, socialization, and supportive services. Staff members who work within these communities are highly trained in the unique needs of people with these disorders. Intentional communities aspire to embody the individualized, integrated community-living approach that the Olmstead decision called for, while simultaneously offering the resource-rich, safe, and supportive experience that a campus atmosphere can offer.

Almost all recently developed models allow for residents to live among neurotypical peers and have easy access to the broader community. Communities range in size from several condominiums on a cul-de-sac to expansive developments with more than a hundred homes.

The allure of an ASD-informed intentional community that provides for the social, vocational, health, and safety needs of its residents is similar to that which leads large numbers of aging, neurotypically developing individuals to seek out retirement communities. Nationally recognized models of intentional communities include First Place (Phoenix, AZ), Sweetwater Spectrum (Sonoma, CA), Cape Cod Village (Orleans, MA), and Bittersweet Farms in Ohio.

First Place is a 55-unit apartment complex near downtown Phoenix that identifies as “community-connected” and “transit-oriented.” Although there are some individuals in the complex who do not have ASD, the development was created for those who do. The goal is to enhance the quality of life for residents through the provision of housing, jobs, social opportunities, and a supportive community.

Sweetwater Spectrum is located blocks from the Sonoma downtown plaza, on just under 3 acres of land. It includes several 4-bedroom homes, a community center with a kitchen, exercise studio, media room, and library, an expansive organic garden, and an outdoor pool.

The Autism Housing Network lists more than 75 intentional communities on its resource page. There are many exciting models in development. For example, Monarch Center for Autism in Cleveland, OH, is planning to develop an innovative intentional community. It will include mixed supported living options for adults across the autism spectrum, separate housing options for parents and family members, on-site social and recreational opportunities, green space, and retail stores intended to serve members of the surrounding community and provide employment and socialization opportunities for its residents.

Casa Familia in South Florida will soon begin constructing a large intentional community that will include innovative housing options, classrooms, social areas, an auditorium, walkways, bike paths, pools, and social enterprises.

It is critical that these ASD intentional communities continue to emerge to meet the long-term needs of the rapidly growing and aging ASD population. 

THE TIME TO ACT IS NOW

Swetlik et al synthesize important, contemporary research on adult ASD healthcare considerations, pursuant to informing the many decisions that physicians and other healthcare professionals must make to address the diverse needs of this population. Their article advocates for further research and highlights the crisis surrounding the scarcity of practitioners specializing in adult ASD.

As for current healthcare providers, parents, care coordinators, and other stakeholders who are tasked with transition planning for individuals with ASD, particularly those with severe symptoms, the time to act is now, especially in creating new intentional community models.

Most adult healthcare providers have not been routinely charged with the responsibility, nor do they have the available time and resources to meet the social and communication needs of these patients. But when faced with an ever-expanding group of patients who demonstrate inadequate social and communication skills, the healthcare system must not turn a blind eye.

The symptoms of autism do not magically resolve when a child reaches adulthood. The medical community must partner with society at large to offer transitional solutions, including intentional communities, to the rapidly growing number of adults with ASD. Current demand outweighs supply, but if we work together, we can create innovative and highly effective solutions. After all, children with autism do not disappear. They grow into adults with autism.

Autism spectrum disorder (ASD) is a neurodevelopmental condition typically diagnosed early in life: the median age at diagnosis is 52 months.¹ Because research demonstrates the benefits of early intervention,² when we think about people with ASD, we generally think about children and adolescents. 

See related article

However, autism spans the entirety of one’s life. This means that children with ASD will grow to be adults with ASD. The US Centers for Disease Control and Prevention estimated that 1 in 59 children were diagnosed with ASD during the surveillance year 2014,¹ which was nearly double the prevalence from just 8 years earlier,³ and a 15% increase since 2012.⁴ As these children grow up, this translates to an ever-growing number of adults with autism.

UNMET NEEDS

Healthcare, housing, and intellectual and developmental disability services for adults with ASD currently fall well short of meeting the needs of this exploding population. If solutions are to be realized, innovative approaches must be employed.

Swetlik et al,⁵ in this issue of the Journal, offer valuable insights into the challenges that practitioners and their adult patients with ASD encounter as a result of seismic shifts in diagnostic criteria, increasing prevalence, and changes to healthcare financial coverage. They also review behavioral and pharmacologic treatments, reproductive health, and caregiver fatigue and discuss the role of the physician and other healthcare practitioners who are likely to have only limited exposure to adult patients with ASD. These wide-ranging considerations speak to the complexity of the healthcare needs of this population.

Swetlik et al also underscore that transition planning is essential for primary care, psychiatry, behavioral health services, continuing education, skill development, and appropriate prevocational training for adolescents with ASD, and yet it is often underutilized or unavailable. There is a dearth of experienced practitioners across these disciplines to serve adults with ASD. The complexity of navigating bureaucratic processes to secure funding (typically Medicaid) supports the necessity of planning early to achieve desired outcomes for each young adult. Additionally, the number of Medicaid waivers that fund many supportive services are limited.

GROWING UP IS HARD; START PLANNING EARLY

Swetlik et al describe the stress these circumstances create for people with ASD and their families. Entering adulthood is a complicated process, fraught with emotional overtones that must include medical care, work considerations, legal and financial arrangements, and, for many, the search for an appropriate residential environment. Planning for these transitions should begin years before adulthood if the process is to work smoothly and effectively.

A transition involving a shift away from a team of familiar pediatric healthcare providers to unfamiliar adult practitioners can be distressing for any adolescent with a chronic condition. For those with ASD, who may have diminished socialization and communication skills, the transition can be especially challenging and must be handled with care.

This transition pales in comparison with the disruptive force of a permanent move out of the family home. Over the next 10 years, 500,000 youths in the United States will age out of school-based ASD services,⁶ and a great many of them will be put on long waiting lists for residential placement.⁷

For young adults with ASD, particularly those with complex needs, establishing an advantageous long-term living arrangement may mean the difference between a healthy, self-directed launch into a new phase of life, or a consequential misstep that exacerbates or worsens symptoms and creates new stressors for the young adult and his or her family. It is especially important that arrangements be made before an aging guardian starts to experience declining health.

Thoughtful and deliberate preplanning helps to reduce stress and prevent emergency placements, and promotes long-term quality of life for people with ASD.

For many years, the prevailing model for the provision of long-term care services for individuals with intellectual and developmental disabilities was institutional care. Large facilities, often located in expansive, self-contained campuses, provided around-the-clock care. Residents slept, ate, worked, and were expected to receive social and emotional fulfillment at the facility.

For some, this was an acceptable model. For many, it was not, but there were few available alternatives. At its best, this model provided a safe environment for its residents, but it did not facilitate achieving an integrated, self-directed life experience. At its worst, neglect and abuse were rampant.

Numerous legislative acts, court decisions, and advocacy efforts drove the deinstitutionalization movement for individuals with intellectual and developmental disabilities between the early 1960s and today. The 1999 case of Olmstead v LC⁸ was among the most significant. In this landmark case, in accordance with the 1990 Americans With Disabilities Act, the US Supreme Court ruled that people with disabilities have the right to receive state-funded services and support in the community rather than in institutions, as long as several criteria are met:

• Community supports are appropriate
• The individual desires to live in the community
• The accommodations to facilitate that arrangement are considered to be reasonable.

In the 20 years since the Olmstead decision, residential services for adults have shifted at an accelerated rate away from institutions toward smaller, community-based settings.^9,10 Community models include but are not limited to:

• Group homes that serve individuals with intellectual and developmental disabilities and provide 24-hour support
• Apartments or homes where individuals live and receive intermittent, less-intensive support
• Adult foster care.

DSM-5: AUTISM IS HETEROGENEOUS

In the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5),¹¹ ASD is characterized by persistent deficits in social interaction and social communication, which begin in early development and are observed in conjunction with restricted, repetitive behaviors, interests, or activities.

DSM-5 provides more than 20 examples of how these criteria might be met. Further, DSM-5 encourages clinicians to select diagnostic specifiers to address overall symptom severity, cognitive abilities, and associated medical conditions.

ONE RESIDENTIAL MODEL DOES NOT FIT ALL

The complex matrix of potential symptom manifestations in people with ASD clearly indicates the need for numerous distinctive residential models for adults with ASD.

One person with severe symptoms of ASD may require one-to-one staffing and proactive preparatory support in order to safely leave the house for a desired social experience. The person may be unable to read, to independently access public transportation, to cope with deviations in expected routine, to initiate conversation, or to remain calm if distressed. This person would benefit from a residential model that allows for a high staffing ratio, access to appropriate transportation, sophisticated autism-informed supports, and the availability of social experiences that are easily accessed—in other words, a very controlled environment.

Another person, with less severe symptoms and fewer behavioral challenges, who possesses a driver’s license and holds a job, may struggle with isolation and loneliness resulting from social inhibitions and skill deficits. This person’s support needs would differ, with emphasis placed on maintaining the appropriate social context rather than on providing a high level of individualized behavioral support.

The shift away from a one-size-fits-all institutional model for long-term care has benefited many individuals with intellectual and developmental disabilities who have experienced opportunities for community integration.

Still, for many adults with ASD, particularly those with complex needs and complex behavior profiles, the widespread conceptual shift to new and different models that assume that all people with intellectual and developmental disabilities will benefit from smaller, scattered-site settings is ill-fitting. It is erroneous to believe that for all adults with ASD, regardless of the complexity of their symptoms, living within a broader community of neurotypically developing neighbors breeds a richer sense of inclusion and connectivity.

FINDING CARE CAN BE DAUNTING

Families of adults with severe symptoms of ASD who seek placement in more traditional community residential models often find it difficult to find capable healthcare providers to serve them. Such settings are ill-equipped to deal with significantly challenging behaviors such as physical aggression, self-injury, property destruction, and elopement (wandering). These supported housing models lack the necessary staffing resources.

Further, publicly available funding options for stand-alone group homes do not typically allow for intensive supervision and management from professionals with expertise in autism. Without specialists who can  implement autism-specific best-practice methods for assessment, service planning, staff training, data collection, and the provision of visual and technological supports for residents, it is difficult to achieve desired outcomes. For example, patients can find it challenging to visit physicians’ offices for preventive and urgent care. Lacking a caregiver who is familiar with the adult patient with ASD and who can help express his or her concerns to healthcare providers, efficient evaluation of any potentially serious medical issue is a daunting task.

A residential model that is gaining popularity across the United States among families and individuals affected by ASD is the intentional community.

Although forms and functions may vary, intentional communities are planned residential developments that promote social cohesion and strive to meet the shared needs of its members. Intentional communities for adults with ASD are designed to meet their social, communication, sensory, and behavioral needs. Every detail from the selection of land, to the construction of housing, the selected staffing model, the daily structure, and the considerations for transportation and amenities are all informed by the specific needs of individuals with autism. Safety, integration, self-direction, independence, and social connectivity are common goals.   

Successful intentional communities designed for people with intellectual and developmental disabilities often have facilities devoted to recreation, continuing education, socialization, and supportive services. Staff members who work within these communities are highly trained in the unique needs of people with these disorders. Intentional communities aspire to embody the individualized, integrated community-living approach that the Olmstead decision called for, while simultaneously offering the resource-rich, safe, and supportive experience that a campus atmosphere can offer.

Almost all recently developed models allow for residents to live among neurotypical peers and have easy access to the broader community. Communities range in size from several condominiums on a cul-de-sac to expansive developments with more than a hundred homes.

The allure of an ASD-informed intentional community that provides for the social, vocational, health, and safety needs of its residents is similar to that which leads large numbers of aging, neurotypically developing individuals to seek out retirement communities. Nationally recognized models of intentional communities include First Place (Phoenix, AZ), Sweetwater Spectrum (Sonoma, CA), Cape Cod Village (Orleans, MA), and Bittersweet Farms in Ohio.

First Place is a 55-unit apartment complex near downtown Phoenix that identifies as “community-connected” and “transit-oriented.” Although there are some individuals in the complex who do not have ASD, the development was created for those who do. The goal is to enhance the quality of life for residents through the provision of housing, jobs, social opportunities, and a supportive community.

Sweetwater Spectrum is located blocks from the Sonoma downtown plaza, on just under 3 acres of land. It includes several 4-bedroom homes, a community center with a kitchen, exercise studio, media room, and library, an expansive organic garden, and an outdoor pool.

The Autism Housing Network lists more than 75 intentional communities on its resource page. There are many exciting models in development. For example, Monarch Center for Autism in Cleveland, OH, is planning to develop an innovative intentional community. It will include mixed supported living options for adults across the autism spectrum, separate housing options for parents and family members, on-site social and recreational opportunities, green space, and retail stores intended to serve members of the surrounding community and provide employment and socialization opportunities for its residents.

Casa Familia in South Florida will soon begin constructing a large intentional community that will include innovative housing options, classrooms, social areas, an auditorium, walkways, bike paths, pools, and social enterprises.

It is critical that these ASD intentional communities continue to emerge to meet the long-term needs of the rapidly growing and aging ASD population. 

THE TIME TO ACT IS NOW

Swetlik et al synthesize important, contemporary research on adult ASD healthcare considerations, pursuant to informing the many decisions that physicians and other healthcare professionals must make to address the diverse needs of this population. Their article advocates for further research and highlights the crisis surrounding the scarcity of practitioners specializing in adult ASD.

As for current healthcare providers, parents, care coordinators, and other stakeholders who are tasked with transition planning for individuals with ASD, particularly those with severe symptoms, the time to act is now, especially in creating new intentional community models.

Most adult healthcare providers have not been routinely charged with the responsibility, nor do they have the available time and resources to meet the social and communication needs of these patients. But when faced with an ever-expanding group of patients who demonstrate inadequate social and communication skills, the healthcare system must not turn a blind eye.

The symptoms of autism do not magically resolve when a child reaches adulthood. The medical community must partner with society at large to offer transitional solutions, including intentional communities, to the rapidly growing number of adults with ASD. Current demand outweighs supply, but if we work together, we can create innovative and highly effective solutions. After all, children with autism do not disappear. They grow into adults with autism.

Among adolescents examined in the emergency department, exposure to synthetic cannabinoids is strongly associated with neuropsychiatric morbidity, according to data published online July 8 ahead of print in Pediatrics. The results support a distinct neuropsychiatric profile of acute synthetic cannabinoid toxicity in adolescents, wrote the investigators.

Synthetic cannabinoids have become popular and accessible and primarily are used for recreation. The adverse effects of synthetic cannabinoid toxicity reported in the literature include tachycardia, cardiac ischemia, acute kidney injury, agitation, first episode of psychosis, seizures, and death. Adolescents are the largest age group presenting to the emergency department with acute synthetic cannabinoid toxicity, and this population requires more intensive care than adults with the same presentation.
 

A multicenter registry analysis

To describe the neuropsychiatric presentation of adolescents to the emergency department after synthetic cannabinoid exposure, compared with that of cannabis exposure, Sarah Ann R. Anderson, MD, PhD, an adolescent medicine fellow at Columbia University Irving Medical Center in New York, and colleagues performed a multicenter registry analysis. They examined data collected from January 2010 through September 2018 from adolescent patients who presented to sites that participate in the Toxicology Investigators Consortium. For each patient, clinicians requested a consultation by a medical toxicologist to aid care. The exposures recorded in the case registry are reported by the patients or witnesses.

Eligible patients were between ages 13 and 19 years and presented to an emergency department with synthetic cannabinoid or cannabis exposure. Dr. Anderson and colleagues collected variables such as age, sex, reported exposures, death in hospital, location of toxicology encounter, and neuropsychiatric signs or symptoms. Patients whose exposure report came from a service outside of an emergency department and those with concomitant use of cannabis and synthetic cannabinoids were excluded. For the purpose of analysis, the investigators classified patients into the following four categories: exposure to synthetic cannabinoids alone, exposure to synthetic cannabinoids and other drugs, exposure to cannabis alone, and exposure to cannabis and other drugs.

Dr. Anderson and colleagues included 348 patients in their study. The sample included 107 patients in the synthetic cannabinoid–only group, 38 in the synthetic cannabinoid/polydrug group, 86 in the cannabis-only group, and 117 in the cannabis/polydrug group. Males predominated in all groups. The one death in the study occurred in the synthetic cannabinoid–only group.
 

Synthetic cannabinoid exposure increased risk for seizures

Compared with the cannabis-only group, the synthetic cannabinoid–only group had an increased risk of coma or CNS depression (odds ratio, 3.42) and seizures (OR, 3.89). The risk of agitation was significantly lower in the synthetic cannabinoid–only group, compared with the cannabis-only group (OR, 0.18). The two single-drug exposure groups did not differ in their associated risks of delirium or toxic psychosis, extrapyramidal signs, dystonia or rigidity, or hallucinations.

Exposure to synthetic cannabinoids plus other drugs was associated with increased risk of agitation (OR, 3.11) and seizures (OR, 4.8), compared with exposure to cannabis plus other drugs. Among patients exposed to synthetic cannabinoids plus other drugs, the most common class of other drug was sympathomimetics (such as synthetic cathinones, cocaine, and amphetamines). Sympathomimetics and ethanol were the two most common classes of drugs among patients exposed to cannabis plus other drugs.
 

Synthetic cannabinoids may have distinctive neuropsychiatric outcomes

“Findings from our study further confirm the previously described association between synthetic cannabinoid–specific overdose and severe neuropsychiatric outcomes,” wrote Dr. Anderson and colleagues. They underscore “the need for targeted public health messaging to adolescents about the dangers of using synthetic cannabinoids alone or combined with other substances.”

The investigators’ finding that patients exposed to synthetic cannabinoids alone had a lower risk of agitation than those exposed to cannabis alone is not consistent with contemporary literature on synthetic cannabinoid–associated agitation. This discordance may reflect differences in the populations studied, “with more severe toxicity prompting the emergency department presentations reported in this study,” wrote Dr. Anderson and colleagues. The current study also may be affected by selection bias, they added.

The researchers acknowledged several limitations of their study. For example, the registry lacked data for variables such as race or ethnicity, concurrent illness, previous drug use, and comorbid conditions. Another limitation was that substance exposure was patient- or witness-reported, and no testing to confirm exposure to synthetic cannabinoids was performed. Finally, the study had a relatively small sample size and lacked information about patients’ long-term outcomes.

Dr. Anderson and colleagues described future research that could address open questions. Analyzing urine to identify the synthetic cannabinoid used and correlating it with the presentation in the emergency department could illuminate specific toxidromes associated with particular compounds, they wrote. Longitudinal data on the long-term effects of adolescent exposure to synthetic cannabinoids would be valuable for understanding potential long-term neurocognitive impairments. “Lastly, additional investigations into the management of adolescent synthetic cannabinoid toxicity in the emergency department is warranted, given the health care cost burden of synthetic cannabinoid–related emergency department visits,” they concluded.

The study was not supported by external funding, and the authors had no relevant disclosures.

[email protected]

SOURCE: Anderson SAR et al. Pediatrics. 2019 Jul 8. doi: 10.1542/peds.2018-2690.

Among adolescents examined in the emergency department, exposure to synthetic cannabinoids is strongly associated with neuropsychiatric morbidity, according to data published online July 8 ahead of print in Pediatrics. The results support a distinct neuropsychiatric profile of acute synthetic cannabinoid toxicity in adolescents, wrote the investigators.

Synthetic cannabinoids have become popular and accessible and primarily are used for recreation. The adverse effects of synthetic cannabinoid toxicity reported in the literature include tachycardia, cardiac ischemia, acute kidney injury, agitation, first episode of psychosis, seizures, and death. Adolescents are the largest age group presenting to the emergency department with acute synthetic cannabinoid toxicity, and this population requires more intensive care than adults with the same presentation.
 

A multicenter registry analysis

To describe the neuropsychiatric presentation of adolescents to the emergency department after synthetic cannabinoid exposure, compared with that of cannabis exposure, Sarah Ann R. Anderson, MD, PhD, an adolescent medicine fellow at Columbia University Irving Medical Center in New York, and colleagues performed a multicenter registry analysis. They examined data collected from January 2010 through September 2018 from adolescent patients who presented to sites that participate in the Toxicology Investigators Consortium. For each patient, clinicians requested a consultation by a medical toxicologist to aid care. The exposures recorded in the case registry are reported by the patients or witnesses.

Eligible patients were between ages 13 and 19 years and presented to an emergency department with synthetic cannabinoid or cannabis exposure. Dr. Anderson and colleagues collected variables such as age, sex, reported exposures, death in hospital, location of toxicology encounter, and neuropsychiatric signs or symptoms. Patients whose exposure report came from a service outside of an emergency department and those with concomitant use of cannabis and synthetic cannabinoids were excluded. For the purpose of analysis, the investigators classified patients into the following four categories: exposure to synthetic cannabinoids alone, exposure to synthetic cannabinoids and other drugs, exposure to cannabis alone, and exposure to cannabis and other drugs.

Dr. Anderson and colleagues included 348 patients in their study. The sample included 107 patients in the synthetic cannabinoid–only group, 38 in the synthetic cannabinoid/polydrug group, 86 in the cannabis-only group, and 117 in the cannabis/polydrug group. Males predominated in all groups. The one death in the study occurred in the synthetic cannabinoid–only group.
 

Synthetic cannabinoid exposure increased risk for seizures

Compared with the cannabis-only group, the synthetic cannabinoid–only group had an increased risk of coma or CNS depression (odds ratio, 3.42) and seizures (OR, 3.89). The risk of agitation was significantly lower in the synthetic cannabinoid–only group, compared with the cannabis-only group (OR, 0.18). The two single-drug exposure groups did not differ in their associated risks of delirium or toxic psychosis, extrapyramidal signs, dystonia or rigidity, or hallucinations.

Exposure to synthetic cannabinoids plus other drugs was associated with increased risk of agitation (OR, 3.11) and seizures (OR, 4.8), compared with exposure to cannabis plus other drugs. Among patients exposed to synthetic cannabinoids plus other drugs, the most common class of other drug was sympathomimetics (such as synthetic cathinones, cocaine, and amphetamines). Sympathomimetics and ethanol were the two most common classes of drugs among patients exposed to cannabis plus other drugs.
 

Synthetic cannabinoids may have distinctive neuropsychiatric outcomes

“Findings from our study further confirm the previously described association between synthetic cannabinoid–specific overdose and severe neuropsychiatric outcomes,” wrote Dr. Anderson and colleagues. They underscore “the need for targeted public health messaging to adolescents about the dangers of using synthetic cannabinoids alone or combined with other substances.”

The investigators’ finding that patients exposed to synthetic cannabinoids alone had a lower risk of agitation than those exposed to cannabis alone is not consistent with contemporary literature on synthetic cannabinoid–associated agitation. This discordance may reflect differences in the populations studied, “with more severe toxicity prompting the emergency department presentations reported in this study,” wrote Dr. Anderson and colleagues. The current study also may be affected by selection bias, they added.

The researchers acknowledged several limitations of their study. For example, the registry lacked data for variables such as race or ethnicity, concurrent illness, previous drug use, and comorbid conditions. Another limitation was that substance exposure was patient- or witness-reported, and no testing to confirm exposure to synthetic cannabinoids was performed. Finally, the study had a relatively small sample size and lacked information about patients’ long-term outcomes.

Dr. Anderson and colleagues described future research that could address open questions. Analyzing urine to identify the synthetic cannabinoid used and correlating it with the presentation in the emergency department could illuminate specific toxidromes associated with particular compounds, they wrote. Longitudinal data on the long-term effects of adolescent exposure to synthetic cannabinoids would be valuable for understanding potential long-term neurocognitive impairments. “Lastly, additional investigations into the management of adolescent synthetic cannabinoid toxicity in the emergency department is warranted, given the health care cost burden of synthetic cannabinoid–related emergency department visits,” they concluded.

The study was not supported by external funding, and the authors had no relevant disclosures.

[email protected]

SOURCE: Anderson SAR et al. Pediatrics. 2019 Jul 8. doi: 10.1542/peds.2018-2690.

Among adolescents examined in the emergency department, exposure to synthetic cannabinoids is strongly associated with neuropsychiatric morbidity, according to data published online July 8 ahead of print in Pediatrics. The results support a distinct neuropsychiatric profile of acute synthetic cannabinoid toxicity in adolescents, wrote the investigators.

Synthetic cannabinoids have become popular and accessible and primarily are used for recreation. The adverse effects of synthetic cannabinoid toxicity reported in the literature include tachycardia, cardiac ischemia, acute kidney injury, agitation, first episode of psychosis, seizures, and death. Adolescents are the largest age group presenting to the emergency department with acute synthetic cannabinoid toxicity, and this population requires more intensive care than adults with the same presentation.
 

A multicenter registry analysis

To describe the neuropsychiatric presentation of adolescents to the emergency department after synthetic cannabinoid exposure, compared with that of cannabis exposure, Sarah Ann R. Anderson, MD, PhD, an adolescent medicine fellow at Columbia University Irving Medical Center in New York, and colleagues performed a multicenter registry analysis. They examined data collected from January 2010 through September 2018 from adolescent patients who presented to sites that participate in the Toxicology Investigators Consortium. For each patient, clinicians requested a consultation by a medical toxicologist to aid care. The exposures recorded in the case registry are reported by the patients or witnesses.

Eligible patients were between ages 13 and 19 years and presented to an emergency department with synthetic cannabinoid or cannabis exposure. Dr. Anderson and colleagues collected variables such as age, sex, reported exposures, death in hospital, location of toxicology encounter, and neuropsychiatric signs or symptoms. Patients whose exposure report came from a service outside of an emergency department and those with concomitant use of cannabis and synthetic cannabinoids were excluded. For the purpose of analysis, the investigators classified patients into the following four categories: exposure to synthetic cannabinoids alone, exposure to synthetic cannabinoids and other drugs, exposure to cannabis alone, and exposure to cannabis and other drugs.

Dr. Anderson and colleagues included 348 patients in their study. The sample included 107 patients in the synthetic cannabinoid–only group, 38 in the synthetic cannabinoid/polydrug group, 86 in the cannabis-only group, and 117 in the cannabis/polydrug group. Males predominated in all groups. The one death in the study occurred in the synthetic cannabinoid–only group.
 

Synthetic cannabinoid exposure increased risk for seizures

Compared with the cannabis-only group, the synthetic cannabinoid–only group had an increased risk of coma or CNS depression (odds ratio, 3.42) and seizures (OR, 3.89). The risk of agitation was significantly lower in the synthetic cannabinoid–only group, compared with the cannabis-only group (OR, 0.18). The two single-drug exposure groups did not differ in their associated risks of delirium or toxic psychosis, extrapyramidal signs, dystonia or rigidity, or hallucinations.

Exposure to synthetic cannabinoids plus other drugs was associated with increased risk of agitation (OR, 3.11) and seizures (OR, 4.8), compared with exposure to cannabis plus other drugs. Among patients exposed to synthetic cannabinoids plus other drugs, the most common class of other drug was sympathomimetics (such as synthetic cathinones, cocaine, and amphetamines). Sympathomimetics and ethanol were the two most common classes of drugs among patients exposed to cannabis plus other drugs.
 

Synthetic cannabinoids may have distinctive neuropsychiatric outcomes

“Findings from our study further confirm the previously described association between synthetic cannabinoid–specific overdose and severe neuropsychiatric outcomes,” wrote Dr. Anderson and colleagues. They underscore “the need for targeted public health messaging to adolescents about the dangers of using synthetic cannabinoids alone or combined with other substances.”

The investigators’ finding that patients exposed to synthetic cannabinoids alone had a lower risk of agitation than those exposed to cannabis alone is not consistent with contemporary literature on synthetic cannabinoid–associated agitation. This discordance may reflect differences in the populations studied, “with more severe toxicity prompting the emergency department presentations reported in this study,” wrote Dr. Anderson and colleagues. The current study also may be affected by selection bias, they added.

The researchers acknowledged several limitations of their study. For example, the registry lacked data for variables such as race or ethnicity, concurrent illness, previous drug use, and comorbid conditions. Another limitation was that substance exposure was patient- or witness-reported, and no testing to confirm exposure to synthetic cannabinoids was performed. Finally, the study had a relatively small sample size and lacked information about patients’ long-term outcomes.

Dr. Anderson and colleagues described future research that could address open questions. Analyzing urine to identify the synthetic cannabinoid used and correlating it with the presentation in the emergency department could illuminate specific toxidromes associated with particular compounds, they wrote. Longitudinal data on the long-term effects of adolescent exposure to synthetic cannabinoids would be valuable for understanding potential long-term neurocognitive impairments. “Lastly, additional investigations into the management of adolescent synthetic cannabinoid toxicity in the emergency department is warranted, given the health care cost burden of synthetic cannabinoid–related emergency department visits,” they concluded.

The study was not supported by external funding, and the authors had no relevant disclosures.

[email protected]

SOURCE: Anderson SAR et al. Pediatrics. 2019 Jul 8. doi: 10.1542/peds.2018-2690.

The number of pregnancies among women taking isotretinoin has decreased since the introduction of the iPledge program, but pregnancy, abortions, and fetal defects associated with isotretinoin exposure are still occurring in women of reproductive age, according to a retrospective study published in JAMA Dermatology.

In 2006, the Food and Drug Administration implemented the iPledge program, with requirements that include women of childbearing age having a negative pregnancy test and evidence of using two forms of contraception monthly to use isotretinoin, a teratogen. “Although the number of pregnancy-related adverse events for patients taking isotretinoin has decreased since 2006, pregnancies, abortions, and fetal defects associated with isotretinoin exposure continue to be a problem,” Elizabeth Tkachenko, BS, from the University of Massachusetts Medical School, Worcester, and coauthors concluded. “Further research is required to determine the most efficacious system to reduce complications for patients and administrative requirements for physicians while at the same time maintaining access to this important drug.” (iPledge followed other Risk Evaluation and Mitigation Strategy systems for isotretinoin.)

She and her colleagues performed a retrospective evaluation of pregnancy-related adverse events related to isotretinoin that had occurred between January 1997 and December 2017 using the FDA Adverse Event Reporting System (FAERS), which receives reports from prescribers, consumers, and pharmaceutical manufacturers. While there could be many different classification terms for each individual, any number of adverse events reported by an individual was counted as one pregnancy. Ms. Tkachenko and colleagues classified abortions, pregnancies during contraception use, and pregnancy-related defects into separate subgroups for analysis.

From 1997 to 2017, there were 6,740 pregnancies among women (mean age, 24.6 years) during treatment with isotretinoin reported to FAERS, with 7 reports in 1997, and a peak of 768 pregnancies in 2006. Almost 70% (4,647) of the pregnancies were reported after iPledge was introduced. Between 2011 and 2017, there were 218-310 pregnancy reports each year.

Of the total number of pregnancy reports during the study period, 1,896 were abortions (28.1% of the total); 10.9% of the total number of pregnancy reports were spontaneous abortions (733). The number of abortions peaked in 2008, with 291 reports, of which 85% were therapeutic abortions. Also peaking in 2008 was the number of reports of pregnancies while taking a contraceptive (64). After 2008, pregnancies and abortions dropped.

Fetal defects peaked in 2000, with 34 cases reported, and dropped to four or fewer reports annually after 2008.

“Our findings demonstrate that reports of pregnancy among women taking isotretinoin are concentrated among those aged 20 to 29 years, peaked in 2006, and have been consistent since 2011,” the authors wrote.

Limitations of the study, they noted, include limitations of FAERS data and possible reporting fatigue among doctors and patients. The total number of isotretinoin courses prescribed to this patient population is also unknown, which affected their ability to determine the true rate of pregnancy-related adverse events, they noted.

The other authors for this study were from Harvard Medical School and the departments of dermatology at Brigham and Women’s Hospital, both in Boston, as well as the University of Pennsylvania, Philadelphia. One author reported support from an award by the National Institute of Arthritis and Musculoskeletal and Skin Diseases of the National Institutes of Health and salary support from a Pfizer Fellowship in Dermatology Patient Oriented Research grant to the trustees of the University of Pennsylvania. The other authors reported no relevant conflicts of interest.

SOURCE: Tkachenko E et al. JAMA Dermatol. 2019. doi: 10.1001/jamadermatol.2019.1388.

The number of pregnancies among women taking isotretinoin has decreased since the introduction of the iPledge program, but pregnancy, abortions, and fetal defects associated with isotretinoin exposure are still occurring in women of reproductive age, according to a retrospective study published in JAMA Dermatology.

In 2006, the Food and Drug Administration implemented the iPledge program, with requirements that include women of childbearing age having a negative pregnancy test and evidence of using two forms of contraception monthly to use isotretinoin, a teratogen. “Although the number of pregnancy-related adverse events for patients taking isotretinoin has decreased since 2006, pregnancies, abortions, and fetal defects associated with isotretinoin exposure continue to be a problem,” Elizabeth Tkachenko, BS, from the University of Massachusetts Medical School, Worcester, and coauthors concluded. “Further research is required to determine the most efficacious system to reduce complications for patients and administrative requirements for physicians while at the same time maintaining access to this important drug.” (iPledge followed other Risk Evaluation and Mitigation Strategy systems for isotretinoin.)

She and her colleagues performed a retrospective evaluation of pregnancy-related adverse events related to isotretinoin that had occurred between January 1997 and December 2017 using the FDA Adverse Event Reporting System (FAERS), which receives reports from prescribers, consumers, and pharmaceutical manufacturers. While there could be many different classification terms for each individual, any number of adverse events reported by an individual was counted as one pregnancy. Ms. Tkachenko and colleagues classified abortions, pregnancies during contraception use, and pregnancy-related defects into separate subgroups for analysis.

From 1997 to 2017, there were 6,740 pregnancies among women (mean age, 24.6 years) during treatment with isotretinoin reported to FAERS, with 7 reports in 1997, and a peak of 768 pregnancies in 2006. Almost 70% (4,647) of the pregnancies were reported after iPledge was introduced. Between 2011 and 2017, there were 218-310 pregnancy reports each year.

Of the total number of pregnancy reports during the study period, 1,896 were abortions (28.1% of the total); 10.9% of the total number of pregnancy reports were spontaneous abortions (733). The number of abortions peaked in 2008, with 291 reports, of which 85% were therapeutic abortions. Also peaking in 2008 was the number of reports of pregnancies while taking a contraceptive (64). After 2008, pregnancies and abortions dropped.

Fetal defects peaked in 2000, with 34 cases reported, and dropped to four or fewer reports annually after 2008.

“Our findings demonstrate that reports of pregnancy among women taking isotretinoin are concentrated among those aged 20 to 29 years, peaked in 2006, and have been consistent since 2011,” the authors wrote.

Limitations of the study, they noted, include limitations of FAERS data and possible reporting fatigue among doctors and patients. The total number of isotretinoin courses prescribed to this patient population is also unknown, which affected their ability to determine the true rate of pregnancy-related adverse events, they noted.

The other authors for this study were from Harvard Medical School and the departments of dermatology at Brigham and Women’s Hospital, both in Boston, as well as the University of Pennsylvania, Philadelphia. One author reported support from an award by the National Institute of Arthritis and Musculoskeletal and Skin Diseases of the National Institutes of Health and salary support from a Pfizer Fellowship in Dermatology Patient Oriented Research grant to the trustees of the University of Pennsylvania. The other authors reported no relevant conflicts of interest.

SOURCE: Tkachenko E et al. JAMA Dermatol. 2019. doi: 10.1001/jamadermatol.2019.1388.

The number of pregnancies among women taking isotretinoin has decreased since the introduction of the iPledge program, but pregnancy, abortions, and fetal defects associated with isotretinoin exposure are still occurring in women of reproductive age, according to a retrospective study published in JAMA Dermatology.

In 2006, the Food and Drug Administration implemented the iPledge program, with requirements that include women of childbearing age having a negative pregnancy test and evidence of using two forms of contraception monthly to use isotretinoin, a teratogen. “Although the number of pregnancy-related adverse events for patients taking isotretinoin has decreased since 2006, pregnancies, abortions, and fetal defects associated with isotretinoin exposure continue to be a problem,” Elizabeth Tkachenko, BS, from the University of Massachusetts Medical School, Worcester, and coauthors concluded. “Further research is required to determine the most efficacious system to reduce complications for patients and administrative requirements for physicians while at the same time maintaining access to this important drug.” (iPledge followed other Risk Evaluation and Mitigation Strategy systems for isotretinoin.)

She and her colleagues performed a retrospective evaluation of pregnancy-related adverse events related to isotretinoin that had occurred between January 1997 and December 2017 using the FDA Adverse Event Reporting System (FAERS), which receives reports from prescribers, consumers, and pharmaceutical manufacturers. While there could be many different classification terms for each individual, any number of adverse events reported by an individual was counted as one pregnancy. Ms. Tkachenko and colleagues classified abortions, pregnancies during contraception use, and pregnancy-related defects into separate subgroups for analysis.

From 1997 to 2017, there were 6,740 pregnancies among women (mean age, 24.6 years) during treatment with isotretinoin reported to FAERS, with 7 reports in 1997, and a peak of 768 pregnancies in 2006. Almost 70% (4,647) of the pregnancies were reported after iPledge was introduced. Between 2011 and 2017, there were 218-310 pregnancy reports each year.

Of the total number of pregnancy reports during the study period, 1,896 were abortions (28.1% of the total); 10.9% of the total number of pregnancy reports were spontaneous abortions (733). The number of abortions peaked in 2008, with 291 reports, of which 85% were therapeutic abortions. Also peaking in 2008 was the number of reports of pregnancies while taking a contraceptive (64). After 2008, pregnancies and abortions dropped.

Fetal defects peaked in 2000, with 34 cases reported, and dropped to four or fewer reports annually after 2008.

“Our findings demonstrate that reports of pregnancy among women taking isotretinoin are concentrated among those aged 20 to 29 years, peaked in 2006, and have been consistent since 2011,” the authors wrote.

Limitations of the study, they noted, include limitations of FAERS data and possible reporting fatigue among doctors and patients. The total number of isotretinoin courses prescribed to this patient population is also unknown, which affected their ability to determine the true rate of pregnancy-related adverse events, they noted.

The other authors for this study were from Harvard Medical School and the departments of dermatology at Brigham and Women’s Hospital, both in Boston, as well as the University of Pennsylvania, Philadelphia. One author reported support from an award by the National Institute of Arthritis and Musculoskeletal and Skin Diseases of the National Institutes of Health and salary support from a Pfizer Fellowship in Dermatology Patient Oriented Research grant to the trustees of the University of Pennsylvania. The other authors reported no relevant conflicts of interest.

SOURCE: Tkachenko E et al. JAMA Dermatol. 2019. doi: 10.1001/jamadermatol.2019.1388.

Sexually active adolescent girls face reproductive coercion (RC) and adolescent relationship abuse (ARA), but there seems to be no statistically significant demographic factors, so education should be universally provided, wrote Amber L. Hill, MSPH, and colleagues in Obstetrics & Gynecology.

Juanmonino/iStock/Getty Images Plus

Ms. Hill of the University of Pittsburgh and colleagues conducted a secondary analysis of data from a cross-sectional baseline survey that had been used in a cluster-randomized trial. The SHARP (School Health Center Healthy Adolescent Relationship Program) trial, investigated an educational intervention regarding healthy relationships. Their analysis included survey data for 550 sexually active girls aged 14-19 years who’d received services from any of eight student health centers across Northern California during the 2012-2013 school year.

The investigators explained that ARA includes physical, sexual, and emotional abuse among adolescents in a romantic relationship; they further described RC as a form of ARA that increases risks of unintended pregnancy, such as contraceptive sabotage, condom manipulation, and pregnancy coercion. RC was defined as a positive response on a 10-item validated measure, and ARA was defined by positive response to at least one of three items that had been derived from Conflict Tactics Scale 2 and the Sexual Experiences Survey.

Among all females in the analysis, 12% reported reproductive coercion, and 17% reported relationship abuse . Black and Hispanic girls were the most likely to report RC, each at 15%; white girls were the most likely to report ARA at 22%. However, none of the demographic differences evaluated in this analysis, including these, were statistically significant, the authors cautioned.

One of the limitations of this study is that its sample was limited to school health centers in Northern California so it may not be generalizable. Furthermore, its cross-sectional design limits causal inference.

“By highlighting the relevance of reproductive coercion in adolescence, this study substantiates the urgent need for developmentally appropriate interventions,” Ms. Hill and associates concluded.

The authors did not report any potential conflicts of interest. Grants from the National Institute of Justice, Office of Justice Programs, U.S. Department of Justice and the National Center for Advancing Translational Sciences of the National Institutes of Health supported the study.

[email protected]

SOURCE: Hill AL et al. Obstet Gynecol. 2019;134(2):351-9.

Sexually active adolescent girls face reproductive coercion (RC) and adolescent relationship abuse (ARA), but there seems to be no statistically significant demographic factors, so education should be universally provided, wrote Amber L. Hill, MSPH, and colleagues in Obstetrics & Gynecology.

Juanmonino/iStock/Getty Images Plus

Ms. Hill of the University of Pittsburgh and colleagues conducted a secondary analysis of data from a cross-sectional baseline survey that had been used in a cluster-randomized trial. The SHARP (School Health Center Healthy Adolescent Relationship Program) trial, investigated an educational intervention regarding healthy relationships. Their analysis included survey data for 550 sexually active girls aged 14-19 years who’d received services from any of eight student health centers across Northern California during the 2012-2013 school year.

The investigators explained that ARA includes physical, sexual, and emotional abuse among adolescents in a romantic relationship; they further described RC as a form of ARA that increases risks of unintended pregnancy, such as contraceptive sabotage, condom manipulation, and pregnancy coercion. RC was defined as a positive response on a 10-item validated measure, and ARA was defined by positive response to at least one of three items that had been derived from Conflict Tactics Scale 2 and the Sexual Experiences Survey.

Among all females in the analysis, 12% reported reproductive coercion, and 17% reported relationship abuse . Black and Hispanic girls were the most likely to report RC, each at 15%; white girls were the most likely to report ARA at 22%. However, none of the demographic differences evaluated in this analysis, including these, were statistically significant, the authors cautioned.

One of the limitations of this study is that its sample was limited to school health centers in Northern California so it may not be generalizable. Furthermore, its cross-sectional design limits causal inference.

“By highlighting the relevance of reproductive coercion in adolescence, this study substantiates the urgent need for developmentally appropriate interventions,” Ms. Hill and associates concluded.

The authors did not report any potential conflicts of interest. Grants from the National Institute of Justice, Office of Justice Programs, U.S. Department of Justice and the National Center for Advancing Translational Sciences of the National Institutes of Health supported the study.

[email protected]

SOURCE: Hill AL et al. Obstet Gynecol. 2019;134(2):351-9.

Sexually active adolescent girls face reproductive coercion (RC) and adolescent relationship abuse (ARA), but there seems to be no statistically significant demographic factors, so education should be universally provided, wrote Amber L. Hill, MSPH, and colleagues in Obstetrics & Gynecology.

Juanmonino/iStock/Getty Images Plus

Ms. Hill of the University of Pittsburgh and colleagues conducted a secondary analysis of data from a cross-sectional baseline survey that had been used in a cluster-randomized trial. The SHARP (School Health Center Healthy Adolescent Relationship Program) trial, investigated an educational intervention regarding healthy relationships. Their analysis included survey data for 550 sexually active girls aged 14-19 years who’d received services from any of eight student health centers across Northern California during the 2012-2013 school year.

The investigators explained that ARA includes physical, sexual, and emotional abuse among adolescents in a romantic relationship; they further described RC as a form of ARA that increases risks of unintended pregnancy, such as contraceptive sabotage, condom manipulation, and pregnancy coercion. RC was defined as a positive response on a 10-item validated measure, and ARA was defined by positive response to at least one of three items that had been derived from Conflict Tactics Scale 2 and the Sexual Experiences Survey.

Among all females in the analysis, 12% reported reproductive coercion, and 17% reported relationship abuse . Black and Hispanic girls were the most likely to report RC, each at 15%; white girls were the most likely to report ARA at 22%. However, none of the demographic differences evaluated in this analysis, including these, were statistically significant, the authors cautioned.

One of the limitations of this study is that its sample was limited to school health centers in Northern California so it may not be generalizable. Furthermore, its cross-sectional design limits causal inference.

“By highlighting the relevance of reproductive coercion in adolescence, this study substantiates the urgent need for developmentally appropriate interventions,” Ms. Hill and associates concluded.

The authors did not report any potential conflicts of interest. Grants from the National Institute of Justice, Office of Justice Programs, U.S. Department of Justice and the National Center for Advancing Translational Sciences of the National Institutes of Health supported the study.

[email protected]

SOURCE: Hill AL et al. Obstet Gynecol. 2019;134(2):351-9.

Intuitively, we have come to believe that adding more to each family members’ schedule – a lesson, an activity, more homework time – is more enriching or meaningful than is a family dinner, which appears to have less direct impact. However, there is a growing body of evidence that, when an entire family eats dinner together 5 or more nights weekly, the emotional health and well-being of all family members is improved. Not only is their health improved, as there is a greater likelihood of eating nutritious food, but so are a child’s school performance and emotional well-being. As the frequency of eating dinner with parents goes up, the rates of mood and anxiety disorders and high-risk behaviors in teenagers go down.

Wavebreakmedia/Thinkstock

But less than 60% of children eat five or more meals with their parents each week (National Center on Addiction and Substance Abuse [CASA], 2012). Few people would suggest that encouraging families to eat dinner together is a bad idea, but time is the ultimate scarce resource. Preparing food and eating together takes time, and parents and children have many demands on that time that feel nonnegotiable, such as homework, exercise, team practice, or work obligations. When you meet with your patients and explain the tremendous health benefits of eating dinner together, you help your patients and their parents make informed decisions about how to rebalance time to prioritize family dinners that have real but fewer obvious impacts then do a piano lesson or dance class.

Of course, children who eat regular family dinners eat more fruits and vegetables and fewer fried foods and soft drinks than do their peers who eat dinner with their families less often. They are less likely to become obese in youth and more likely to eat healthily and maintain a healthy weight once they live on their own as adults.

It is important to set the framework for what really matters in a family dinner so that your patients can enjoy all of these benefits. Parents may assume that the meal must be prepared from scratch with only fresh, local, or organic ingredients. But what matters most is that the food is delicious and nutritious, and that the time spent eating (and preparing it) is fun, and promotes conversation and connection. Homemade food usually is more nutritious and will bring more of the physical health benefits, but many store-bought ingredients or even take-out options can be healthy and can promote time for the family to sit together and connect. If parents enjoy preparing food, then it’s worthwhile! And they should not worry about having every member of the family together at every meal. Even if only one parent and child are present for a dinner, they each will enjoy the benefits.

Offer some ideas about how to facilitate conversations. Asking about how a child’s day went may spark conversations sometimes, but usually people benefit from specific questions. What made you really laugh today? What did you have for lunch? Whom did you sit next to on the bus? If a parent starts by telling a story about his or her day, even better! This is especially potent if a parent talks about something embarrassing or challenging, or mentions a failure. Young children will have plenty of these stories, and adolescents build resilience by internalizing the idea that setbacks and difficulties are a normal, healthy part of every day. This is a great time to talk about current events, whether in the news, entertainment, or sports. And telling stories about when children were younger, when the parents were children, or even about grandparents or more distant ancestors is a wonderful way to engage children in the greater story of their family narrative, and is always engaging and memorable.

At a deeper level, the family dinner is a time that recognizes each person’s contribution to a discussion, and facilitates a calm discussion of the families’ history and values. There is connection, communication, and building of trust. Families that cannot schedule a minimum number of dinners or that have dinners filled with tension and conflict, are very likely to have children at risk. For those conflicted and often unhappy families, a pediatrician’s early recognition and intervention could make a meaningful difference.

Dr. Swick is physician in chief at Ohana, Center for Child and Adolescent Behavioral Health, Community Hospital of the Monterey (Calif.) Peninsula. Dr. Jellinek is professor emeritus of psychiatry and pediatrics, Harvard Medical School, Boston. Email them at [email protected].

References

1. J Adolesc Health. 2006;39(3):337-45.

2. J Adolesc. 2010;33(1):187-96.

3. J Adolesc Health. 2009;44(5):431-6.

4. Health Psychol. 2008;27(Suppl 2):s109-17.

5. J Adolesc Health. 2009;45(4):389-95.

6. Pediatrics. 2019 Jul 8. doi: 10.1542/peds.2018-945.

7. Arch Pediatr Adolesc Med. 2004;158(8):792-6.

8. Prev Med. 2018;113:7-12.

Intuitively, we have come to believe that adding more to each family members’ schedule – a lesson, an activity, more homework time – is more enriching or meaningful than is a family dinner, which appears to have less direct impact. However, there is a growing body of evidence that, when an entire family eats dinner together 5 or more nights weekly, the emotional health and well-being of all family members is improved. Not only is their health improved, as there is a greater likelihood of eating nutritious food, but so are a child’s school performance and emotional well-being. As the frequency of eating dinner with parents goes up, the rates of mood and anxiety disorders and high-risk behaviors in teenagers go down.

Wavebreakmedia/Thinkstock

But less than 60% of children eat five or more meals with their parents each week (National Center on Addiction and Substance Abuse [CASA], 2012). Few people would suggest that encouraging families to eat dinner together is a bad idea, but time is the ultimate scarce resource. Preparing food and eating together takes time, and parents and children have many demands on that time that feel nonnegotiable, such as homework, exercise, team practice, or work obligations. When you meet with your patients and explain the tremendous health benefits of eating dinner together, you help your patients and their parents make informed decisions about how to rebalance time to prioritize family dinners that have real but fewer obvious impacts then do a piano lesson or dance class.

Of course, children who eat regular family dinners eat more fruits and vegetables and fewer fried foods and soft drinks than do their peers who eat dinner with their families less often. They are less likely to become obese in youth and more likely to eat healthily and maintain a healthy weight once they live on their own as adults.

It is important to set the framework for what really matters in a family dinner so that your patients can enjoy all of these benefits. Parents may assume that the meal must be prepared from scratch with only fresh, local, or organic ingredients. But what matters most is that the food is delicious and nutritious, and that the time spent eating (and preparing it) is fun, and promotes conversation and connection. Homemade food usually is more nutritious and will bring more of the physical health benefits, but many store-bought ingredients or even take-out options can be healthy and can promote time for the family to sit together and connect. If parents enjoy preparing food, then it’s worthwhile! And they should not worry about having every member of the family together at every meal. Even if only one parent and child are present for a dinner, they each will enjoy the benefits.

Offer some ideas about how to facilitate conversations. Asking about how a child’s day went may spark conversations sometimes, but usually people benefit from specific questions. What made you really laugh today? What did you have for lunch? Whom did you sit next to on the bus? If a parent starts by telling a story about his or her day, even better! This is especially potent if a parent talks about something embarrassing or challenging, or mentions a failure. Young children will have plenty of these stories, and adolescents build resilience by internalizing the idea that setbacks and difficulties are a normal, healthy part of every day. This is a great time to talk about current events, whether in the news, entertainment, or sports. And telling stories about when children were younger, when the parents were children, or even about grandparents or more distant ancestors is a wonderful way to engage children in the greater story of their family narrative, and is always engaging and memorable.

At a deeper level, the family dinner is a time that recognizes each person’s contribution to a discussion, and facilitates a calm discussion of the families’ history and values. There is connection, communication, and building of trust. Families that cannot schedule a minimum number of dinners or that have dinners filled with tension and conflict, are very likely to have children at risk. For those conflicted and often unhappy families, a pediatrician’s early recognition and intervention could make a meaningful difference.

Dr. Swick is physician in chief at Ohana, Center for Child and Adolescent Behavioral Health, Community Hospital of the Monterey (Calif.) Peninsula. Dr. Jellinek is professor emeritus of psychiatry and pediatrics, Harvard Medical School, Boston. Email them at [email protected].

References

1. J Adolesc Health. 2006;39(3):337-45.

2. J Adolesc. 2010;33(1):187-96.

3. J Adolesc Health. 2009;44(5):431-6.

4. Health Psychol. 2008;27(Suppl 2):s109-17.

5. J Adolesc Health. 2009;45(4):389-95.

6. Pediatrics. 2019 Jul 8. doi: 10.1542/peds.2018-945.

7. Arch Pediatr Adolesc Med. 2004;158(8):792-6.

8. Prev Med. 2018;113:7-12.

Intuitively, we have come to believe that adding more to each family members’ schedule – a lesson, an activity, more homework time – is more enriching or meaningful than is a family dinner, which appears to have less direct impact. However, there is a growing body of evidence that, when an entire family eats dinner together 5 or more nights weekly, the emotional health and well-being of all family members is improved. Not only is their health improved, as there is a greater likelihood of eating nutritious food, but so are a child’s school performance and emotional well-being. As the frequency of eating dinner with parents goes up, the rates of mood and anxiety disorders and high-risk behaviors in teenagers go down.

Wavebreakmedia/Thinkstock

But less than 60% of children eat five or more meals with their parents each week (National Center on Addiction and Substance Abuse [CASA], 2012). Few people would suggest that encouraging families to eat dinner together is a bad idea, but time is the ultimate scarce resource. Preparing food and eating together takes time, and parents and children have many demands on that time that feel nonnegotiable, such as homework, exercise, team practice, or work obligations. When you meet with your patients and explain the tremendous health benefits of eating dinner together, you help your patients and their parents make informed decisions about how to rebalance time to prioritize family dinners that have real but fewer obvious impacts then do a piano lesson or dance class.

Of course, children who eat regular family dinners eat more fruits and vegetables and fewer fried foods and soft drinks than do their peers who eat dinner with their families less often. They are less likely to become obese in youth and more likely to eat healthily and maintain a healthy weight once they live on their own as adults.

It is important to set the framework for what really matters in a family dinner so that your patients can enjoy all of these benefits. Parents may assume that the meal must be prepared from scratch with only fresh, local, or organic ingredients. But what matters most is that the food is delicious and nutritious, and that the time spent eating (and preparing it) is fun, and promotes conversation and connection. Homemade food usually is more nutritious and will bring more of the physical health benefits, but many store-bought ingredients or even take-out options can be healthy and can promote time for the family to sit together and connect. If parents enjoy preparing food, then it’s worthwhile! And they should not worry about having every member of the family together at every meal. Even if only one parent and child are present for a dinner, they each will enjoy the benefits.

Offer some ideas about how to facilitate conversations. Asking about how a child’s day went may spark conversations sometimes, but usually people benefit from specific questions. What made you really laugh today? What did you have for lunch? Whom did you sit next to on the bus? If a parent starts by telling a story about his or her day, even better! This is especially potent if a parent talks about something embarrassing or challenging, or mentions a failure. Young children will have plenty of these stories, and adolescents build resilience by internalizing the idea that setbacks and difficulties are a normal, healthy part of every day. This is a great time to talk about current events, whether in the news, entertainment, or sports. And telling stories about when children were younger, when the parents were children, or even about grandparents or more distant ancestors is a wonderful way to engage children in the greater story of their family narrative, and is always engaging and memorable.

At a deeper level, the family dinner is a time that recognizes each person’s contribution to a discussion, and facilitates a calm discussion of the families’ history and values. There is connection, communication, and building of trust. Families that cannot schedule a minimum number of dinners or that have dinners filled with tension and conflict, are very likely to have children at risk. For those conflicted and often unhappy families, a pediatrician’s early recognition and intervention could make a meaningful difference.

Dr. Swick is physician in chief at Ohana, Center for Child and Adolescent Behavioral Health, Community Hospital of the Monterey (Calif.) Peninsula. Dr. Jellinek is professor emeritus of psychiatry and pediatrics, Harvard Medical School, Boston. Email them at [email protected].

References

1. J Adolesc Health. 2006;39(3):337-45.

2. J Adolesc. 2010;33(1):187-96.

3. J Adolesc Health. 2009;44(5):431-6.

4. Health Psychol. 2008;27(Suppl 2):s109-17.

5. J Adolesc Health. 2009;45(4):389-95.

6. Pediatrics. 2019 Jul 8. doi: 10.1542/peds.2018-945.

7. Arch Pediatr Adolesc Med. 2004;158(8):792-6.

8. Prev Med. 2018;113:7-12.

AUSTIN, TEX. – Topical calcineurin inhibitors (TCIs) are an effective therapeutic option for pediatric patients with periorificial dermatitis (POD), as monotherapy or as part of a combination regimen, results from a retrospective cohort study showed.

The mainstays of treatment for POD include topical and oral antibiotics. In an interview prior to the annual meeting of the Society for Pediatric Dermatology, Ayelet Ollech, MD, said that the most common systemic agents used include erythromycin, azithromycin, and, in patients older than 8-10 years of age, minocycline or doxycycline. Topical agents, which are often used as monotherapy in mild disease, include metronidazole, clindamycin, erythromycin, sodium sulfacetamide, and, less often, azelaic acid, topical retinoids, and ivermectin. “TCIs (pimecrolimus 1% cream and tacrolimus 0.03% or 0.1% ointment) are a good steroid sparing option for POD,” said Dr. Ollech, a pediatric dermatology fellow at Ann & Robert H. Lurie Children’s Hospital of Chicago. “In the adult population, two randomized controlled studies of pimecrolimus 1% cream showed good results. In the pediatric population, there are only a few case series and case reports of TCIs for the treatment of POD.”

In what is believed to be the largest study of its kind, Dr. Ollech, Anthony J. Mancini, MD, and colleagues assessed the clinical utility of TCI in 132 pediatric patients with POD who were treated in the division of dermatology at Children’s Hospital of Chicago between 2008 and 2018. The researchers made note of epidemiologic variables, personal and family medical histories, possible triggers, duration of illness, previous treatments, distribution (periocular, perinasal, perioral, extra facial regions), severity of POD, treatment(s) prescribed, duration of therapy, clinical response, recurrences, and side effects. In an effort to capture missing data, the researchers performed follow-up via telephone for all patients who lacked appropriate follow-up documentation in the medical record.

Of the 132 patients, the female: male ratio was 1.2:1 and the median age at diagnosis was 4.2 years. About one-third of patients (33%) had involvement of one region, 38% had involvement of two regions, 26% had involvement of three regions, and 3% patients had involvement of all regions. The most common disorders on medical history were atopic dermatitis and asthma (in 29% and 17% of patients, respectively).


Dr. Ollech reported that 72 of the 132 patients (55%) had evaluable follow up data via either medical record documentation or the phone questionnaire. Of these, 67% were treated with TCI alone, 19% were treated with a combination of TCI and topical metronidazole, and 10% were treated with a combination of TCI and a systemic antibiotic. The median duration of treatment was 60 days. The researchers observed complete response in 65% of patients treated with TCI alone, in 64% of those treated with TCI and metronidazole, and in 70% of those treated with TCI and a systemic antibiotic. Adverse events attributed to TCI were rare and mild in severity.

“We were surprised that there were almost no reported side effects from the usage of TCIs as it is known that these agents can cause a burning or stinging sensation,” Dr. Ollech said. “Only one case described this side effect. We found 30% of the patients to have associated atopic dermatitis (AD) as well as a few patients with irritant dermatitis. We were also surprised how convenient the TCI treatment was for a patient who had POD and concomitant facial AD or even irritant dermatitis as an agent that can treat both. This can be very helpful for the parents that apply the medication to have a single solution to more than one rash.”

The researchers noted recurrence of POD in 14% of patients overall, including 6% of patients treated with TCI alone, 29% of patients treated with TCI and metronidazole, and 30% of patients treated with TCI and a systemic antibiotic.

Dr. Ollech acknowledged certain limitations of the study, including its retrospective design and lack of a control group. She and her colleagues reported having no financial disclosures.

[email protected]

SOURCE: Ollech A et al. SPD 2019, poster 23.

AUSTIN, TEX. – Topical calcineurin inhibitors (TCIs) are an effective therapeutic option for pediatric patients with periorificial dermatitis (POD), as monotherapy or as part of a combination regimen, results from a retrospective cohort study showed.

The mainstays of treatment for POD include topical and oral antibiotics. In an interview prior to the annual meeting of the Society for Pediatric Dermatology, Ayelet Ollech, MD, said that the most common systemic agents used include erythromycin, azithromycin, and, in patients older than 8-10 years of age, minocycline or doxycycline. Topical agents, which are often used as monotherapy in mild disease, include metronidazole, clindamycin, erythromycin, sodium sulfacetamide, and, less often, azelaic acid, topical retinoids, and ivermectin. “TCIs (pimecrolimus 1% cream and tacrolimus 0.03% or 0.1% ointment) are a good steroid sparing option for POD,” said Dr. Ollech, a pediatric dermatology fellow at Ann & Robert H. Lurie Children’s Hospital of Chicago. “In the adult population, two randomized controlled studies of pimecrolimus 1% cream showed good results. In the pediatric population, there are only a few case series and case reports of TCIs for the treatment of POD.”

In what is believed to be the largest study of its kind, Dr. Ollech, Anthony J. Mancini, MD, and colleagues assessed the clinical utility of TCI in 132 pediatric patients with POD who were treated in the division of dermatology at Children’s Hospital of Chicago between 2008 and 2018. The researchers made note of epidemiologic variables, personal and family medical histories, possible triggers, duration of illness, previous treatments, distribution (periocular, perinasal, perioral, extra facial regions), severity of POD, treatment(s) prescribed, duration of therapy, clinical response, recurrences, and side effects. In an effort to capture missing data, the researchers performed follow-up via telephone for all patients who lacked appropriate follow-up documentation in the medical record.

Of the 132 patients, the female: male ratio was 1.2:1 and the median age at diagnosis was 4.2 years. About one-third of patients (33%) had involvement of one region, 38% had involvement of two regions, 26% had involvement of three regions, and 3% patients had involvement of all regions. The most common disorders on medical history were atopic dermatitis and asthma (in 29% and 17% of patients, respectively).


Dr. Ollech reported that 72 of the 132 patients (55%) had evaluable follow up data via either medical record documentation or the phone questionnaire. Of these, 67% were treated with TCI alone, 19% were treated with a combination of TCI and topical metronidazole, and 10% were treated with a combination of TCI and a systemic antibiotic. The median duration of treatment was 60 days. The researchers observed complete response in 65% of patients treated with TCI alone, in 64% of those treated with TCI and metronidazole, and in 70% of those treated with TCI and a systemic antibiotic. Adverse events attributed to TCI were rare and mild in severity.

“We were surprised that there were almost no reported side effects from the usage of TCIs as it is known that these agents can cause a burning or stinging sensation,” Dr. Ollech said. “Only one case described this side effect. We found 30% of the patients to have associated atopic dermatitis (AD) as well as a few patients with irritant dermatitis. We were also surprised how convenient the TCI treatment was for a patient who had POD and concomitant facial AD or even irritant dermatitis as an agent that can treat both. This can be very helpful for the parents that apply the medication to have a single solution to more than one rash.”

The researchers noted recurrence of POD in 14% of patients overall, including 6% of patients treated with TCI alone, 29% of patients treated with TCI and metronidazole, and 30% of patients treated with TCI and a systemic antibiotic.

Dr. Ollech acknowledged certain limitations of the study, including its retrospective design and lack of a control group. She and her colleagues reported having no financial disclosures.

[email protected]

SOURCE: Ollech A et al. SPD 2019, poster 23.

AUSTIN, TEX. – Topical calcineurin inhibitors (TCIs) are an effective therapeutic option for pediatric patients with periorificial dermatitis (POD), as monotherapy or as part of a combination regimen, results from a retrospective cohort study showed.

The mainstays of treatment for POD include topical and oral antibiotics. In an interview prior to the annual meeting of the Society for Pediatric Dermatology, Ayelet Ollech, MD, said that the most common systemic agents used include erythromycin, azithromycin, and, in patients older than 8-10 years of age, minocycline or doxycycline. Topical agents, which are often used as monotherapy in mild disease, include metronidazole, clindamycin, erythromycin, sodium sulfacetamide, and, less often, azelaic acid, topical retinoids, and ivermectin. “TCIs (pimecrolimus 1% cream and tacrolimus 0.03% or 0.1% ointment) are a good steroid sparing option for POD,” said Dr. Ollech, a pediatric dermatology fellow at Ann & Robert H. Lurie Children’s Hospital of Chicago. “In the adult population, two randomized controlled studies of pimecrolimus 1% cream showed good results. In the pediatric population, there are only a few case series and case reports of TCIs for the treatment of POD.”

In what is believed to be the largest study of its kind, Dr. Ollech, Anthony J. Mancini, MD, and colleagues assessed the clinical utility of TCI in 132 pediatric patients with POD who were treated in the division of dermatology at Children’s Hospital of Chicago between 2008 and 2018. The researchers made note of epidemiologic variables, personal and family medical histories, possible triggers, duration of illness, previous treatments, distribution (periocular, perinasal, perioral, extra facial regions), severity of POD, treatment(s) prescribed, duration of therapy, clinical response, recurrences, and side effects. In an effort to capture missing data, the researchers performed follow-up via telephone for all patients who lacked appropriate follow-up documentation in the medical record.

Of the 132 patients, the female: male ratio was 1.2:1 and the median age at diagnosis was 4.2 years. About one-third of patients (33%) had involvement of one region, 38% had involvement of two regions, 26% had involvement of three regions, and 3% patients had involvement of all regions. The most common disorders on medical history were atopic dermatitis and asthma (in 29% and 17% of patients, respectively).


Dr. Ollech reported that 72 of the 132 patients (55%) had evaluable follow up data via either medical record documentation or the phone questionnaire. Of these, 67% were treated with TCI alone, 19% were treated with a combination of TCI and topical metronidazole, and 10% were treated with a combination of TCI and a systemic antibiotic. The median duration of treatment was 60 days. The researchers observed complete response in 65% of patients treated with TCI alone, in 64% of those treated with TCI and metronidazole, and in 70% of those treated with TCI and a systemic antibiotic. Adverse events attributed to TCI were rare and mild in severity.

“We were surprised that there were almost no reported side effects from the usage of TCIs as it is known that these agents can cause a burning or stinging sensation,” Dr. Ollech said. “Only one case described this side effect. We found 30% of the patients to have associated atopic dermatitis (AD) as well as a few patients with irritant dermatitis. We were also surprised how convenient the TCI treatment was for a patient who had POD and concomitant facial AD or even irritant dermatitis as an agent that can treat both. This can be very helpful for the parents that apply the medication to have a single solution to more than one rash.”

The researchers noted recurrence of POD in 14% of patients overall, including 6% of patients treated with TCI alone, 29% of patients treated with TCI and metronidazole, and 30% of patients treated with TCI and a systemic antibiotic.

Dr. Ollech acknowledged certain limitations of the study, including its retrospective design and lack of a control group. She and her colleagues reported having no financial disclosures.

[email protected]

SOURCE: Ollech A et al. SPD 2019, poster 23.