Weight bias against teens: Understand it and combat it

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NEW ORLEANS – Weight-based harassment and bias is extremely prevalent throughout society and in doctors’ own offices, so be aware of ways to address it and support your patients regardless of weight.

Rebecca Puhl, PhD, a deputy director of the Rudd Center for Food Policy and Obesity at the University of Connecticut, Hartford, said that weight-based discrimination can occur whatever a person’s size or body shape, but it’s most often targeted at youth who are overweight or obese.

These children and teens commonly face teasing, harassment, cyberbullying, physical aggression, and social bullying from peers, coaches, teachers, and even parents, Dr. Puhl told attendees at the annual meeting of the American Academy of Pediatrics.

Common beliefs about overweight people – that they have little self discipline or poor eating and activity habits – only perpetuate stereotypes, she said. Common stereotypes are that people with obesity are noncompliant, lazy, sloppy, unsuccessful, unintelligent, dishonest, and awkward.

And health professionals of every type have been found to harbor these biases. In one study of more than 4,000 first-year medical students, well over half the respondents revealed explicit (74%) and implicit (67%) weight bias (Obesity. 2014 Apr;22[4]:1201-8). The study also found that explicit weight bias was stronger than explicit bias against blacks, Hispanics, LGBTQ people, and poor people.
 

Know the effects of weight stigma

Far from a minor issue, the discrimination that begins in childhood against those who are overweight can have a long-lasting impact on their future prospects and mental health. Being overweight is overwhelmingly cited as the most common reason for bullying (Pediatr Obes. 2016 Aug;11[4]:241-50). Dr. Puhl described to attendees how weight bias shifts throughout a lifetime, beginning as early as preschool. In childhood, the stereotypes about being overweight worsen, and the teasing and bullying increase. By adolescence, this treatment affects teens’ psychological, social, and physical well-being. It then translates in adulthood into reduced opportunities in employment and education, and poorer access and treatment in health care.

The mental distress caused by weight bullying often takes the form of depression, anxiety, and substance use, Dr. Puhl said, and children’s academic success can be hampered by bullying about their weight. One study found a higher risk of poor grades and school avoidance with each additional teasing incident (J Youth Adolesc. 2012 Jan;41[1]:27-40).

Weight stigma also can contribute to more weight gain, obesity, and lower physical activity levels. Maladaptive eating behaviors can result from weight stigmatization as well: binge eating, emotional eating, increased consumption in general, and other eating disorders. Severe binge eating is 80% more likely among teens who are bullied about their weight, Dr. Puhl said, and the risk increases with increased frequency and types of bullying.

Children who are teased about their weight often become less willing to engage in physical activity, she noted. They may skip gym class, feel less competent about physical activity, and end up enjoying sports participation less.

Further, sexual- and gender-minority youth report high rates of weight-related teasing from friends and family regardless of their body mass index (BMI) percentile, Dr. Puhl emphasized. Researchers have found bullying about weight in this population linked to dieting, difficulty sleeping, high stress levels, binge drinking, smoking, and marijuana use.
 

 

 

Know how to combat weight bias

Dr. Puhl described strategies for reducing weight bias based on clinical practice recommendations in the American Academy of Pediatrics’ policy statement entitled “Stigma Experienced by Children and Adolescents With Obesity” (Pediatrics. 2017 Dec;140[6]:e20173034).

Be aware. Consider how personal assumptions and attitudes about weight can affect your body language, tone of voice, facial expression, gestures, eye contact (or lack thereof), and spatial distance from the patient.

Recognizing the biological, genetic, and environmental causes of obesity can reduce stigma and improve understanding of the complexity of obesity etiology. It’s also important that you help parents understand this complexity and the negative impact of weight stigma.

Consider language and word choice. “Carefully consider language that might unintentionally communicate bias, blame, or negative judgment,” Dr. Puhl told attendees. “Use language that is supportive and empowering.”

Terms such as “unhealthy weight” and “high BMI” are less stigmatizing than “fat” and “morbidly obese” to parents, she said, and research has found nearly a quarter of parents would avoid future doctor appointments if their child’s doctor used stigmatizing terms to discuss weight (Pediatrics. 2011 Oct;128[4]:e786-93).

Teens themselves may have diverse preferences for the language used. Start by asking: “Could we talk about your weight today?” and then follow up by directly asking, “what words would you feel most comfortable with as we talk about your weight?”

Person-first language – such as “person with obesity” instead of “obese person” also is important to reducing stigma, she said.

It’s normal for you to feel uneasy about bringing up weight with patients, so Dr. Puhl recommended you practice dialogue out loud.

“Acknowledge your strengths,” she said. “You already have the skills and experience of engaging in difficult conversations with patients and families on a range of other health issues,” so apply that in this context as well.

Screen for negative experiences that could indicate weight-based bullying. These could include teasing and bullying, low self-esteem, poor school performance, depression, and anxiety.

“Remember that weight-based victimization can occur at diverse body sizes, not just in youth with obesity,” Dr. Puhl said. If you discover your patient is experiencing weight-related bullying, determine whether they have a support system in place and whether a mental health referral is appropriate. Provide or refer for behavior change counseling with motivational interviewing and patient-centered, empathic approaches. Parents should be aware of the issue and should contact the child’s teachers and school administration to help address it.

But before you do that, keep in mind that it’s not just peers doing the bullying. According to a study of teens with obesity enrolled in a national weight-loss camp, 37% of teen participants in 2012 said that their parents bully them (Pediatrics. 2013 Jan;131[1]:e1-9).

You should assess whether family interactions or the parents’ own history with weight is involved. If parents make disparaging comments about their child’s weight, “use this as an opportunity to model appropriate language and educate parents about weight bias,” Dr. Puhl said.

It’s also important to realize that parents themselves often are frustrated, so critical comments about their language or approach can backfire, she warned. Instead, help parents understand how to create a home setting that encourages healthy food choices, praises children for healthy decision making, and models positive health behaviors. It is key for them to focus on improving their children’s health behaviors rather than focusing on weight.

And before you contact the school, remember teachers also are common perpetrators of weight stigma, Dr. Puhl noted. She gave as an example a study in which investigators assessed 133 teachers’ perceptions of middle or high school students’ abilities based on photos that had been digitally altered to show each girl both as average weight or as overweight. Each photo was associated with an essay specifically chosen because it was neither particularly good nor bad (Brit J Educ Psychol. 2019 Oct 26. doi: 10.1111/bjep.12322). The teachers judged the essays believed to be submitted by overweight girls to be “similar in structural quality,” but they gave the overweight girls lower grades than the average-weight girls. They also indicated that they considered the overweight girls “put forth more effort, needed more remedial assistance, and had lower overall grades in school.” The teachers also rated other teachers’ weight bias to be at a low level, and their own weight bias to be “significantly lower” than the others.

Assess your clinical environment. Be aware of your clinical environment and whether it meets the needs of youth with diverse body sizes. That includes having a range of sturdy armless seating options and adequately sized doorways, hallways, and restrooms. You also should have beds, wheelchairs, and exam tables with adequate weight capacity. Also check that you have supplies, such as robes or blood pressure cuffs, on hand for a variety of body sizes.

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NEW ORLEANS – Weight-based harassment and bias is extremely prevalent throughout society and in doctors’ own offices, so be aware of ways to address it and support your patients regardless of weight.

Rebecca Puhl, PhD, a deputy director of the Rudd Center for Food Policy and Obesity at the University of Connecticut, Hartford, said that weight-based discrimination can occur whatever a person’s size or body shape, but it’s most often targeted at youth who are overweight or obese.

These children and teens commonly face teasing, harassment, cyberbullying, physical aggression, and social bullying from peers, coaches, teachers, and even parents, Dr. Puhl told attendees at the annual meeting of the American Academy of Pediatrics.

Common beliefs about overweight people – that they have little self discipline or poor eating and activity habits – only perpetuate stereotypes, she said. Common stereotypes are that people with obesity are noncompliant, lazy, sloppy, unsuccessful, unintelligent, dishonest, and awkward.

And health professionals of every type have been found to harbor these biases. In one study of more than 4,000 first-year medical students, well over half the respondents revealed explicit (74%) and implicit (67%) weight bias (Obesity. 2014 Apr;22[4]:1201-8). The study also found that explicit weight bias was stronger than explicit bias against blacks, Hispanics, LGBTQ people, and poor people.
 

Know the effects of weight stigma

Far from a minor issue, the discrimination that begins in childhood against those who are overweight can have a long-lasting impact on their future prospects and mental health. Being overweight is overwhelmingly cited as the most common reason for bullying (Pediatr Obes. 2016 Aug;11[4]:241-50). Dr. Puhl described to attendees how weight bias shifts throughout a lifetime, beginning as early as preschool. In childhood, the stereotypes about being overweight worsen, and the teasing and bullying increase. By adolescence, this treatment affects teens’ psychological, social, and physical well-being. It then translates in adulthood into reduced opportunities in employment and education, and poorer access and treatment in health care.

The mental distress caused by weight bullying often takes the form of depression, anxiety, and substance use, Dr. Puhl said, and children’s academic success can be hampered by bullying about their weight. One study found a higher risk of poor grades and school avoidance with each additional teasing incident (J Youth Adolesc. 2012 Jan;41[1]:27-40).

Weight stigma also can contribute to more weight gain, obesity, and lower physical activity levels. Maladaptive eating behaviors can result from weight stigmatization as well: binge eating, emotional eating, increased consumption in general, and other eating disorders. Severe binge eating is 80% more likely among teens who are bullied about their weight, Dr. Puhl said, and the risk increases with increased frequency and types of bullying.

Children who are teased about their weight often become less willing to engage in physical activity, she noted. They may skip gym class, feel less competent about physical activity, and end up enjoying sports participation less.

Further, sexual- and gender-minority youth report high rates of weight-related teasing from friends and family regardless of their body mass index (BMI) percentile, Dr. Puhl emphasized. Researchers have found bullying about weight in this population linked to dieting, difficulty sleeping, high stress levels, binge drinking, smoking, and marijuana use.
 

 

 

Know how to combat weight bias

Dr. Puhl described strategies for reducing weight bias based on clinical practice recommendations in the American Academy of Pediatrics’ policy statement entitled “Stigma Experienced by Children and Adolescents With Obesity” (Pediatrics. 2017 Dec;140[6]:e20173034).

Be aware. Consider how personal assumptions and attitudes about weight can affect your body language, tone of voice, facial expression, gestures, eye contact (or lack thereof), and spatial distance from the patient.

Recognizing the biological, genetic, and environmental causes of obesity can reduce stigma and improve understanding of the complexity of obesity etiology. It’s also important that you help parents understand this complexity and the negative impact of weight stigma.

Consider language and word choice. “Carefully consider language that might unintentionally communicate bias, blame, or negative judgment,” Dr. Puhl told attendees. “Use language that is supportive and empowering.”

Terms such as “unhealthy weight” and “high BMI” are less stigmatizing than “fat” and “morbidly obese” to parents, she said, and research has found nearly a quarter of parents would avoid future doctor appointments if their child’s doctor used stigmatizing terms to discuss weight (Pediatrics. 2011 Oct;128[4]:e786-93).

Teens themselves may have diverse preferences for the language used. Start by asking: “Could we talk about your weight today?” and then follow up by directly asking, “what words would you feel most comfortable with as we talk about your weight?”

Person-first language – such as “person with obesity” instead of “obese person” also is important to reducing stigma, she said.

It’s normal for you to feel uneasy about bringing up weight with patients, so Dr. Puhl recommended you practice dialogue out loud.

“Acknowledge your strengths,” she said. “You already have the skills and experience of engaging in difficult conversations with patients and families on a range of other health issues,” so apply that in this context as well.

Screen for negative experiences that could indicate weight-based bullying. These could include teasing and bullying, low self-esteem, poor school performance, depression, and anxiety.

“Remember that weight-based victimization can occur at diverse body sizes, not just in youth with obesity,” Dr. Puhl said. If you discover your patient is experiencing weight-related bullying, determine whether they have a support system in place and whether a mental health referral is appropriate. Provide or refer for behavior change counseling with motivational interviewing and patient-centered, empathic approaches. Parents should be aware of the issue and should contact the child’s teachers and school administration to help address it.

But before you do that, keep in mind that it’s not just peers doing the bullying. According to a study of teens with obesity enrolled in a national weight-loss camp, 37% of teen participants in 2012 said that their parents bully them (Pediatrics. 2013 Jan;131[1]:e1-9).

You should assess whether family interactions or the parents’ own history with weight is involved. If parents make disparaging comments about their child’s weight, “use this as an opportunity to model appropriate language and educate parents about weight bias,” Dr. Puhl said.

It’s also important to realize that parents themselves often are frustrated, so critical comments about their language or approach can backfire, she warned. Instead, help parents understand how to create a home setting that encourages healthy food choices, praises children for healthy decision making, and models positive health behaviors. It is key for them to focus on improving their children’s health behaviors rather than focusing on weight.

And before you contact the school, remember teachers also are common perpetrators of weight stigma, Dr. Puhl noted. She gave as an example a study in which investigators assessed 133 teachers’ perceptions of middle or high school students’ abilities based on photos that had been digitally altered to show each girl both as average weight or as overweight. Each photo was associated with an essay specifically chosen because it was neither particularly good nor bad (Brit J Educ Psychol. 2019 Oct 26. doi: 10.1111/bjep.12322). The teachers judged the essays believed to be submitted by overweight girls to be “similar in structural quality,” but they gave the overweight girls lower grades than the average-weight girls. They also indicated that they considered the overweight girls “put forth more effort, needed more remedial assistance, and had lower overall grades in school.” The teachers also rated other teachers’ weight bias to be at a low level, and their own weight bias to be “significantly lower” than the others.

Assess your clinical environment. Be aware of your clinical environment and whether it meets the needs of youth with diverse body sizes. That includes having a range of sturdy armless seating options and adequately sized doorways, hallways, and restrooms. You also should have beds, wheelchairs, and exam tables with adequate weight capacity. Also check that you have supplies, such as robes or blood pressure cuffs, on hand for a variety of body sizes.

NEW ORLEANS – Weight-based harassment and bias is extremely prevalent throughout society and in doctors’ own offices, so be aware of ways to address it and support your patients regardless of weight.

Rebecca Puhl, PhD, a deputy director of the Rudd Center for Food Policy and Obesity at the University of Connecticut, Hartford, said that weight-based discrimination can occur whatever a person’s size or body shape, but it’s most often targeted at youth who are overweight or obese.

These children and teens commonly face teasing, harassment, cyberbullying, physical aggression, and social bullying from peers, coaches, teachers, and even parents, Dr. Puhl told attendees at the annual meeting of the American Academy of Pediatrics.

Common beliefs about overweight people – that they have little self discipline or poor eating and activity habits – only perpetuate stereotypes, she said. Common stereotypes are that people with obesity are noncompliant, lazy, sloppy, unsuccessful, unintelligent, dishonest, and awkward.

And health professionals of every type have been found to harbor these biases. In one study of more than 4,000 first-year medical students, well over half the respondents revealed explicit (74%) and implicit (67%) weight bias (Obesity. 2014 Apr;22[4]:1201-8). The study also found that explicit weight bias was stronger than explicit bias against blacks, Hispanics, LGBTQ people, and poor people.
 

Know the effects of weight stigma

Far from a minor issue, the discrimination that begins in childhood against those who are overweight can have a long-lasting impact on their future prospects and mental health. Being overweight is overwhelmingly cited as the most common reason for bullying (Pediatr Obes. 2016 Aug;11[4]:241-50). Dr. Puhl described to attendees how weight bias shifts throughout a lifetime, beginning as early as preschool. In childhood, the stereotypes about being overweight worsen, and the teasing and bullying increase. By adolescence, this treatment affects teens’ psychological, social, and physical well-being. It then translates in adulthood into reduced opportunities in employment and education, and poorer access and treatment in health care.

The mental distress caused by weight bullying often takes the form of depression, anxiety, and substance use, Dr. Puhl said, and children’s academic success can be hampered by bullying about their weight. One study found a higher risk of poor grades and school avoidance with each additional teasing incident (J Youth Adolesc. 2012 Jan;41[1]:27-40).

Weight stigma also can contribute to more weight gain, obesity, and lower physical activity levels. Maladaptive eating behaviors can result from weight stigmatization as well: binge eating, emotional eating, increased consumption in general, and other eating disorders. Severe binge eating is 80% more likely among teens who are bullied about their weight, Dr. Puhl said, and the risk increases with increased frequency and types of bullying.

Children who are teased about their weight often become less willing to engage in physical activity, she noted. They may skip gym class, feel less competent about physical activity, and end up enjoying sports participation less.

Further, sexual- and gender-minority youth report high rates of weight-related teasing from friends and family regardless of their body mass index (BMI) percentile, Dr. Puhl emphasized. Researchers have found bullying about weight in this population linked to dieting, difficulty sleeping, high stress levels, binge drinking, smoking, and marijuana use.
 

 

 

Know how to combat weight bias

Dr. Puhl described strategies for reducing weight bias based on clinical practice recommendations in the American Academy of Pediatrics’ policy statement entitled “Stigma Experienced by Children and Adolescents With Obesity” (Pediatrics. 2017 Dec;140[6]:e20173034).

Be aware. Consider how personal assumptions and attitudes about weight can affect your body language, tone of voice, facial expression, gestures, eye contact (or lack thereof), and spatial distance from the patient.

Recognizing the biological, genetic, and environmental causes of obesity can reduce stigma and improve understanding of the complexity of obesity etiology. It’s also important that you help parents understand this complexity and the negative impact of weight stigma.

Consider language and word choice. “Carefully consider language that might unintentionally communicate bias, blame, or negative judgment,” Dr. Puhl told attendees. “Use language that is supportive and empowering.”

Terms such as “unhealthy weight” and “high BMI” are less stigmatizing than “fat” and “morbidly obese” to parents, she said, and research has found nearly a quarter of parents would avoid future doctor appointments if their child’s doctor used stigmatizing terms to discuss weight (Pediatrics. 2011 Oct;128[4]:e786-93).

Teens themselves may have diverse preferences for the language used. Start by asking: “Could we talk about your weight today?” and then follow up by directly asking, “what words would you feel most comfortable with as we talk about your weight?”

Person-first language – such as “person with obesity” instead of “obese person” also is important to reducing stigma, she said.

It’s normal for you to feel uneasy about bringing up weight with patients, so Dr. Puhl recommended you practice dialogue out loud.

“Acknowledge your strengths,” she said. “You already have the skills and experience of engaging in difficult conversations with patients and families on a range of other health issues,” so apply that in this context as well.

Screen for negative experiences that could indicate weight-based bullying. These could include teasing and bullying, low self-esteem, poor school performance, depression, and anxiety.

“Remember that weight-based victimization can occur at diverse body sizes, not just in youth with obesity,” Dr. Puhl said. If you discover your patient is experiencing weight-related bullying, determine whether they have a support system in place and whether a mental health referral is appropriate. Provide or refer for behavior change counseling with motivational interviewing and patient-centered, empathic approaches. Parents should be aware of the issue and should contact the child’s teachers and school administration to help address it.

But before you do that, keep in mind that it’s not just peers doing the bullying. According to a study of teens with obesity enrolled in a national weight-loss camp, 37% of teen participants in 2012 said that their parents bully them (Pediatrics. 2013 Jan;131[1]:e1-9).

You should assess whether family interactions or the parents’ own history with weight is involved. If parents make disparaging comments about their child’s weight, “use this as an opportunity to model appropriate language and educate parents about weight bias,” Dr. Puhl said.

It’s also important to realize that parents themselves often are frustrated, so critical comments about their language or approach can backfire, she warned. Instead, help parents understand how to create a home setting that encourages healthy food choices, praises children for healthy decision making, and models positive health behaviors. It is key for them to focus on improving their children’s health behaviors rather than focusing on weight.

And before you contact the school, remember teachers also are common perpetrators of weight stigma, Dr. Puhl noted. She gave as an example a study in which investigators assessed 133 teachers’ perceptions of middle or high school students’ abilities based on photos that had been digitally altered to show each girl both as average weight or as overweight. Each photo was associated with an essay specifically chosen because it was neither particularly good nor bad (Brit J Educ Psychol. 2019 Oct 26. doi: 10.1111/bjep.12322). The teachers judged the essays believed to be submitted by overweight girls to be “similar in structural quality,” but they gave the overweight girls lower grades than the average-weight girls. They also indicated that they considered the overweight girls “put forth more effort, needed more remedial assistance, and had lower overall grades in school.” The teachers also rated other teachers’ weight bias to be at a low level, and their own weight bias to be “significantly lower” than the others.

Assess your clinical environment. Be aware of your clinical environment and whether it meets the needs of youth with diverse body sizes. That includes having a range of sturdy armless seating options and adequately sized doorways, hallways, and restrooms. You also should have beds, wheelchairs, and exam tables with adequate weight capacity. Also check that you have supplies, such as robes or blood pressure cuffs, on hand for a variety of body sizes.

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Consider PET/CT when infectious source is a puzzler

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– Dual positron emission tomography-computed tomography (PET/CT) scans changed the treatment course of nearly half of patients whose scans were positive for infection. In a single-center systematic review of 18fluorodeoxyglucose (FDG)–PET/CT scans, 55 of the 138 scans (40%) changed clinical management.

Kari Oakes/MDedge News
Dr. Benjamin Viglianti

Presenting the findings at the annual meeting of the Radiological Society of North America, Benjamin Viglianti, MD, PhD, said that PET/CT had particular utility in cases of bacteremia and endocarditis, in which the scans changed treatment in 46% of those cases.

Dr. Viglianti, a radiologist at the University of Michigan, Ann Arbor, explained that medical student and first author Anitha Menon, himself, and their collaborators deliberately used a broad definition of clinical management change. The management course was considered to change not only if an unknown infection site was discovered or if a new intervention was initiated after the scan, but also if antibiotic choice or duration was changed or an additional specialty was consulted.

Scans were included in the study if an infectious etiology was found in the scan and if the patient received an infectious disease consult. Bacteremia and endocarditis were the most frequent indications for scans and also the indications for which management was most frequently changed. When a vascular cause was the indication for the scan, management changed 41% of the time. For fevers of unknown origin, the scan changed management in 30% of the cases, while for osteomyelitis, management was changed for 28% of patients.

The investigators identified several broad themes from their review that pointed toward when clinicians might consider FDG-PET/CT imaging in infectious disease management.

The first, said Dr. Viglianti, was that “for patients with suspected vascular graft infection, PET/CT using FDG may be a good first-choice imaging modality.” He pointed to an illustrative case of a patient who was 1 month out from open repair of a thoracoabdominal aortic aneurysm. The patient had abdominal pain, epigastric tenderness and nausea, as well as an erythematous incision site. A CT scan just revealed an abdominal fluid collection, but the PET/CT scan showed radiotracer uptake at the prior repair site, indicating infection.

For patients with bacteremia, the investigators judged that FDG-PET/CT might be particularly useful in patients who have a graft, prosthetic valve, or cardiac device. Here, Dr. Viglianti and his collaborators highlighted the scan of a woman with DiGeorge syndrome who had received aortic root replacement for truncus arteriosis. She had been found to have persistent enterococcal bacteremia at high levels, but had been symptom free. To take a close look at the suspected infectious nidus, a transesophageal echocardiogram had been obtained, but this study didn’t turn up any clear masses or vegetations. The PET/CT scan, though, revealed avid FDG uptake in the area of the prosthesis.

Management course was not likely to be changed for patients with fever of unknown origin, but the investigators did note that whole-body PET/CT was useful to distinguish infectious etiologies from hematologic and oncologic processes. Their review included a patient who had Crohn’s disease and fever, myalgias, and upper abdominal pain, as well as liver enzyme elevation. The PET/CT showed radiotracer uptake within the spleen, which was enlarged. The scan also showed bone marrow uptake; these findings pointed toward hemophagocytic lymphohistiocytosis rather than an infectious etiology.

For osteomyelitis, said Dr. Viglianti, FDG-PET may have limited utility; it might be most useful when MRI is contraindicated. Within the study population, the investigators identified a patient who had chills and fever along with focal tenderness over the lumbar spine in the context of recent pyelonephritis of a graft kidney. Here, MRI findings were suspicious for osteomyelitis and diskitis, and the FDG uptake at the L4-L5 vertebral levels confirmed the MRI results.

When a patient with a prosthetic valve is suspected of having endocarditis, “cardiac PET/CT may be of high diagnostic value,” said Dr. Viglianti. For patients with endocarditis of native valves, though, a full-body FDG-PET/CT scan may spot septic emboli. A patient identified in the investigators’ review had been admitted for methicillin-resistant Staphylococcus aureus endocarditis. The patient, who had a history of intravenous drug use, received a transesophageal echocardiogram that found severe tricuspid valve regurgitation and vegetations. The whole-body PET/CT scan, though, revealed avid uptake in both buttocks, as well as thigh, ankle and calf muscles – a pattern “suspicious for infectious myositis,” said the researchers.

In discussion during the poster session, Dr. Viglianti said that, although reimbursement for PET/CT scans for infectious etiologies might not be feasible, it can still be a reasonable and even cost-effective choice. At his institution, he said, the requisite radioisotope is made in-house, twice daily, so it’s relatively easy to arrange scans. Since PET/CT scans can be acquired relatively quickly and there’s no delay while waiting for radiotracer uptake, clinical decisions can be made more quickly than when waiting for bone uptake for a technetium-99 scan, he said. This can have the effect of saving a night of hospitalization in many cases.

Dr. Viglianti and Ms. Menon reported that they had no relevant conflicts of interest. No outside sources of funding were reported.

SOURCE: Menon A et al. RSNA 2019, Abstract NM203-SDSUB1.

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– Dual positron emission tomography-computed tomography (PET/CT) scans changed the treatment course of nearly half of patients whose scans were positive for infection. In a single-center systematic review of 18fluorodeoxyglucose (FDG)–PET/CT scans, 55 of the 138 scans (40%) changed clinical management.

Kari Oakes/MDedge News
Dr. Benjamin Viglianti

Presenting the findings at the annual meeting of the Radiological Society of North America, Benjamin Viglianti, MD, PhD, said that PET/CT had particular utility in cases of bacteremia and endocarditis, in which the scans changed treatment in 46% of those cases.

Dr. Viglianti, a radiologist at the University of Michigan, Ann Arbor, explained that medical student and first author Anitha Menon, himself, and their collaborators deliberately used a broad definition of clinical management change. The management course was considered to change not only if an unknown infection site was discovered or if a new intervention was initiated after the scan, but also if antibiotic choice or duration was changed or an additional specialty was consulted.

Scans were included in the study if an infectious etiology was found in the scan and if the patient received an infectious disease consult. Bacteremia and endocarditis were the most frequent indications for scans and also the indications for which management was most frequently changed. When a vascular cause was the indication for the scan, management changed 41% of the time. For fevers of unknown origin, the scan changed management in 30% of the cases, while for osteomyelitis, management was changed for 28% of patients.

The investigators identified several broad themes from their review that pointed toward when clinicians might consider FDG-PET/CT imaging in infectious disease management.

The first, said Dr. Viglianti, was that “for patients with suspected vascular graft infection, PET/CT using FDG may be a good first-choice imaging modality.” He pointed to an illustrative case of a patient who was 1 month out from open repair of a thoracoabdominal aortic aneurysm. The patient had abdominal pain, epigastric tenderness and nausea, as well as an erythematous incision site. A CT scan just revealed an abdominal fluid collection, but the PET/CT scan showed radiotracer uptake at the prior repair site, indicating infection.

For patients with bacteremia, the investigators judged that FDG-PET/CT might be particularly useful in patients who have a graft, prosthetic valve, or cardiac device. Here, Dr. Viglianti and his collaborators highlighted the scan of a woman with DiGeorge syndrome who had received aortic root replacement for truncus arteriosis. She had been found to have persistent enterococcal bacteremia at high levels, but had been symptom free. To take a close look at the suspected infectious nidus, a transesophageal echocardiogram had been obtained, but this study didn’t turn up any clear masses or vegetations. The PET/CT scan, though, revealed avid FDG uptake in the area of the prosthesis.

Management course was not likely to be changed for patients with fever of unknown origin, but the investigators did note that whole-body PET/CT was useful to distinguish infectious etiologies from hematologic and oncologic processes. Their review included a patient who had Crohn’s disease and fever, myalgias, and upper abdominal pain, as well as liver enzyme elevation. The PET/CT showed radiotracer uptake within the spleen, which was enlarged. The scan also showed bone marrow uptake; these findings pointed toward hemophagocytic lymphohistiocytosis rather than an infectious etiology.

For osteomyelitis, said Dr. Viglianti, FDG-PET may have limited utility; it might be most useful when MRI is contraindicated. Within the study population, the investigators identified a patient who had chills and fever along with focal tenderness over the lumbar spine in the context of recent pyelonephritis of a graft kidney. Here, MRI findings were suspicious for osteomyelitis and diskitis, and the FDG uptake at the L4-L5 vertebral levels confirmed the MRI results.

When a patient with a prosthetic valve is suspected of having endocarditis, “cardiac PET/CT may be of high diagnostic value,” said Dr. Viglianti. For patients with endocarditis of native valves, though, a full-body FDG-PET/CT scan may spot septic emboli. A patient identified in the investigators’ review had been admitted for methicillin-resistant Staphylococcus aureus endocarditis. The patient, who had a history of intravenous drug use, received a transesophageal echocardiogram that found severe tricuspid valve regurgitation and vegetations. The whole-body PET/CT scan, though, revealed avid uptake in both buttocks, as well as thigh, ankle and calf muscles – a pattern “suspicious for infectious myositis,” said the researchers.

In discussion during the poster session, Dr. Viglianti said that, although reimbursement for PET/CT scans for infectious etiologies might not be feasible, it can still be a reasonable and even cost-effective choice. At his institution, he said, the requisite radioisotope is made in-house, twice daily, so it’s relatively easy to arrange scans. Since PET/CT scans can be acquired relatively quickly and there’s no delay while waiting for radiotracer uptake, clinical decisions can be made more quickly than when waiting for bone uptake for a technetium-99 scan, he said. This can have the effect of saving a night of hospitalization in many cases.

Dr. Viglianti and Ms. Menon reported that they had no relevant conflicts of interest. No outside sources of funding were reported.

SOURCE: Menon A et al. RSNA 2019, Abstract NM203-SDSUB1.

– Dual positron emission tomography-computed tomography (PET/CT) scans changed the treatment course of nearly half of patients whose scans were positive for infection. In a single-center systematic review of 18fluorodeoxyglucose (FDG)–PET/CT scans, 55 of the 138 scans (40%) changed clinical management.

Kari Oakes/MDedge News
Dr. Benjamin Viglianti

Presenting the findings at the annual meeting of the Radiological Society of North America, Benjamin Viglianti, MD, PhD, said that PET/CT had particular utility in cases of bacteremia and endocarditis, in which the scans changed treatment in 46% of those cases.

Dr. Viglianti, a radiologist at the University of Michigan, Ann Arbor, explained that medical student and first author Anitha Menon, himself, and their collaborators deliberately used a broad definition of clinical management change. The management course was considered to change not only if an unknown infection site was discovered or if a new intervention was initiated after the scan, but also if antibiotic choice or duration was changed or an additional specialty was consulted.

Scans were included in the study if an infectious etiology was found in the scan and if the patient received an infectious disease consult. Bacteremia and endocarditis were the most frequent indications for scans and also the indications for which management was most frequently changed. When a vascular cause was the indication for the scan, management changed 41% of the time. For fevers of unknown origin, the scan changed management in 30% of the cases, while for osteomyelitis, management was changed for 28% of patients.

The investigators identified several broad themes from their review that pointed toward when clinicians might consider FDG-PET/CT imaging in infectious disease management.

The first, said Dr. Viglianti, was that “for patients with suspected vascular graft infection, PET/CT using FDG may be a good first-choice imaging modality.” He pointed to an illustrative case of a patient who was 1 month out from open repair of a thoracoabdominal aortic aneurysm. The patient had abdominal pain, epigastric tenderness and nausea, as well as an erythematous incision site. A CT scan just revealed an abdominal fluid collection, but the PET/CT scan showed radiotracer uptake at the prior repair site, indicating infection.

For patients with bacteremia, the investigators judged that FDG-PET/CT might be particularly useful in patients who have a graft, prosthetic valve, or cardiac device. Here, Dr. Viglianti and his collaborators highlighted the scan of a woman with DiGeorge syndrome who had received aortic root replacement for truncus arteriosis. She had been found to have persistent enterococcal bacteremia at high levels, but had been symptom free. To take a close look at the suspected infectious nidus, a transesophageal echocardiogram had been obtained, but this study didn’t turn up any clear masses or vegetations. The PET/CT scan, though, revealed avid FDG uptake in the area of the prosthesis.

Management course was not likely to be changed for patients with fever of unknown origin, but the investigators did note that whole-body PET/CT was useful to distinguish infectious etiologies from hematologic and oncologic processes. Their review included a patient who had Crohn’s disease and fever, myalgias, and upper abdominal pain, as well as liver enzyme elevation. The PET/CT showed radiotracer uptake within the spleen, which was enlarged. The scan also showed bone marrow uptake; these findings pointed toward hemophagocytic lymphohistiocytosis rather than an infectious etiology.

For osteomyelitis, said Dr. Viglianti, FDG-PET may have limited utility; it might be most useful when MRI is contraindicated. Within the study population, the investigators identified a patient who had chills and fever along with focal tenderness over the lumbar spine in the context of recent pyelonephritis of a graft kidney. Here, MRI findings were suspicious for osteomyelitis and diskitis, and the FDG uptake at the L4-L5 vertebral levels confirmed the MRI results.

When a patient with a prosthetic valve is suspected of having endocarditis, “cardiac PET/CT may be of high diagnostic value,” said Dr. Viglianti. For patients with endocarditis of native valves, though, a full-body FDG-PET/CT scan may spot septic emboli. A patient identified in the investigators’ review had been admitted for methicillin-resistant Staphylococcus aureus endocarditis. The patient, who had a history of intravenous drug use, received a transesophageal echocardiogram that found severe tricuspid valve regurgitation and vegetations. The whole-body PET/CT scan, though, revealed avid uptake in both buttocks, as well as thigh, ankle and calf muscles – a pattern “suspicious for infectious myositis,” said the researchers.

In discussion during the poster session, Dr. Viglianti said that, although reimbursement for PET/CT scans for infectious etiologies might not be feasible, it can still be a reasonable and even cost-effective choice. At his institution, he said, the requisite radioisotope is made in-house, twice daily, so it’s relatively easy to arrange scans. Since PET/CT scans can be acquired relatively quickly and there’s no delay while waiting for radiotracer uptake, clinical decisions can be made more quickly than when waiting for bone uptake for a technetium-99 scan, he said. This can have the effect of saving a night of hospitalization in many cases.

Dr. Viglianti and Ms. Menon reported that they had no relevant conflicts of interest. No outside sources of funding were reported.

SOURCE: Menon A et al. RSNA 2019, Abstract NM203-SDSUB1.

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Older NHL survivors show worse cognitive decline

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Older long-term survivors of non-Hodgkin lymphoma (NHL) may have worse cognitive outcomes compared with the noncancer aging population, according to a cross-sectional study.

The findings suggest additional research is needed to better understand cognitive decline in older survivors of NHL.

“The aim of the present study was to examine the difference in cognitive status between a group of long-term older survivors of NHL compared with a group of noncancer controls of the same age,” wrote Domenico La Carpia, MD, of Fondazione ANT Italia Onlus, Florence, Italy, and colleagues.

The researchers conducted a multicenter cross-sectional cohort study involving 63 long-term survivors of NHL and 61 age-matched controls. Their report was published in the Journal of Geriatric Oncology.

Eligible survivors and controls were aged 65 years and older. Among both groups, the mean age of study participants was 74 years, and most survivors were women (58.7%).

While cognitive decline was assessed via standardized neuropsychological testing, the team also evaluated polypharmacy, functional status, and level of multimorbidity in the cohort.

Other clinical data, including the time from complete remission, type of treatment received, and histopathological type of tumor, were collected from patient charts and included in the analysis.

After analysis, the researchers found that NHL survivors had a higher mean number of chronic conditions (3.4 vs. 2.3; P = .003), were receiving more medications (3.4 vs. 2.3; P = .03), and had worse functional status compared with controls.

In addition, survivors had impaired executive functioning compared with control subjects (Trail Making Test B-A, 47.9 vs. 32.1; P = .04), but scores on the Mini Mental State Examination (MMSE) did not differ between the groups.

“A small, statistically significant difference was also observed in verbal memory scores between the two groups,” they reported.

The researchers acknowledged that a key limitation was the cross-sectional nature of the study; hence, causality cannot be inferred from the data.

“Comprehensive geriatric assessment for older cancer survivors is advisable to identify those individuals who are at highest risk of developing disability and to implement tailored early interventions,” they concluded.

No funding sources were reported. The authors reported having no conflicts of interest.

SOURCE: La Carpia D et al. J Geriatr Oncol. 2020 Jan 31. doi: 10.1016/j.jgo.2020.01.007.

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Older long-term survivors of non-Hodgkin lymphoma (NHL) may have worse cognitive outcomes compared with the noncancer aging population, according to a cross-sectional study.

The findings suggest additional research is needed to better understand cognitive decline in older survivors of NHL.

“The aim of the present study was to examine the difference in cognitive status between a group of long-term older survivors of NHL compared with a group of noncancer controls of the same age,” wrote Domenico La Carpia, MD, of Fondazione ANT Italia Onlus, Florence, Italy, and colleagues.

The researchers conducted a multicenter cross-sectional cohort study involving 63 long-term survivors of NHL and 61 age-matched controls. Their report was published in the Journal of Geriatric Oncology.

Eligible survivors and controls were aged 65 years and older. Among both groups, the mean age of study participants was 74 years, and most survivors were women (58.7%).

While cognitive decline was assessed via standardized neuropsychological testing, the team also evaluated polypharmacy, functional status, and level of multimorbidity in the cohort.

Other clinical data, including the time from complete remission, type of treatment received, and histopathological type of tumor, were collected from patient charts and included in the analysis.

After analysis, the researchers found that NHL survivors had a higher mean number of chronic conditions (3.4 vs. 2.3; P = .003), were receiving more medications (3.4 vs. 2.3; P = .03), and had worse functional status compared with controls.

In addition, survivors had impaired executive functioning compared with control subjects (Trail Making Test B-A, 47.9 vs. 32.1; P = .04), but scores on the Mini Mental State Examination (MMSE) did not differ between the groups.

“A small, statistically significant difference was also observed in verbal memory scores between the two groups,” they reported.

The researchers acknowledged that a key limitation was the cross-sectional nature of the study; hence, causality cannot be inferred from the data.

“Comprehensive geriatric assessment for older cancer survivors is advisable to identify those individuals who are at highest risk of developing disability and to implement tailored early interventions,” they concluded.

No funding sources were reported. The authors reported having no conflicts of interest.

SOURCE: La Carpia D et al. J Geriatr Oncol. 2020 Jan 31. doi: 10.1016/j.jgo.2020.01.007.

Older long-term survivors of non-Hodgkin lymphoma (NHL) may have worse cognitive outcomes compared with the noncancer aging population, according to a cross-sectional study.

The findings suggest additional research is needed to better understand cognitive decline in older survivors of NHL.

“The aim of the present study was to examine the difference in cognitive status between a group of long-term older survivors of NHL compared with a group of noncancer controls of the same age,” wrote Domenico La Carpia, MD, of Fondazione ANT Italia Onlus, Florence, Italy, and colleagues.

The researchers conducted a multicenter cross-sectional cohort study involving 63 long-term survivors of NHL and 61 age-matched controls. Their report was published in the Journal of Geriatric Oncology.

Eligible survivors and controls were aged 65 years and older. Among both groups, the mean age of study participants was 74 years, and most survivors were women (58.7%).

While cognitive decline was assessed via standardized neuropsychological testing, the team also evaluated polypharmacy, functional status, and level of multimorbidity in the cohort.

Other clinical data, including the time from complete remission, type of treatment received, and histopathological type of tumor, were collected from patient charts and included in the analysis.

After analysis, the researchers found that NHL survivors had a higher mean number of chronic conditions (3.4 vs. 2.3; P = .003), were receiving more medications (3.4 vs. 2.3; P = .03), and had worse functional status compared with controls.

In addition, survivors had impaired executive functioning compared with control subjects (Trail Making Test B-A, 47.9 vs. 32.1; P = .04), but scores on the Mini Mental State Examination (MMSE) did not differ between the groups.

“A small, statistically significant difference was also observed in verbal memory scores between the two groups,” they reported.

The researchers acknowledged that a key limitation was the cross-sectional nature of the study; hence, causality cannot be inferred from the data.

“Comprehensive geriatric assessment for older cancer survivors is advisable to identify those individuals who are at highest risk of developing disability and to implement tailored early interventions,” they concluded.

No funding sources were reported. The authors reported having no conflicts of interest.

SOURCE: La Carpia D et al. J Geriatr Oncol. 2020 Jan 31. doi: 10.1016/j.jgo.2020.01.007.

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FROM THE JOURNAL OF GERIATRIC ONCOLOGY

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Genetic testing helps avoid false hemoglobinopathy diagnoses in newborns

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Confirmatory genetic testing may be useful in the diagnosis of hemoglobinopathies for newborns with an abnormal hemoglobin (Hb) pattern, according to a recent study.

The findings suggest further research is needed to evaluate whether genetic testing programs for newborns could have diagnostic value in the clinical setting.

“We studied a consecutive cohort of newborns with an ‘FSA’ pattern (a suspected diagnosis of HbSbeta+) on the initial newborn screening test,” explained Lisa M. Shook of the University of Cincinnati and colleagues. The results were published in the International Journal of Neonatal Screening.

The retrospective study included a total of 1,151 newborns with an abnormal Hb pattern, 31 of which had an FSA pattern. The newborns were screened for hemoglobinopathies from 2015 to 2018. The findings of the initial newborn screening test (a suspected diagnosis of HbSbeta+) were compared with the diagnosis established using both protein-based and genetic confirmatory testing. Protein-based testing cannot accurately detect several hemoglobinopathies in newborns, especially when beta-thalassemia mutations are involved, according to the authors.

“During this study period, genetic testing was not universally applied in advance; it was used based on clinical suspicion,” the researchers wrote.

Among newborns with an FSA pattern, the mean gestational age was 38.7 weeks. In total, 17 newborns received genetic testing, and 30 had protein-based confirmatory testing.

“In this consecutive cohort of 31 newborns with a suspected diagnosis of HbSbeta+ based on initial newborn screening (an FSA pattern), none actually had HbSbeta+. All had the sickle cell trait (HbAS), instead; that is, we found that an initial FSA pattern was much more likely to indicate a final diagnosis of HbAS than HbSbeta+,” the authors wrote.

This meant that two-thirds of these newborns had a correct diagnosis of HbAS established at 2-4 weeks of age by protein-based confirmatory testing (and confirmed by genetic testing in a subset), but that the remaining one-third still had an incorrect, suspected diagnosis of HbSbeta+. This could lead to unnecessary treatment and testing of infants and incorrect, disease-focused counseling of parents and family members, according to the authors.

Two key limitations of the study were the small sample size and retrospective design.

“Based on this experience in which genetic testing was not universally applied, we now perform simultaneous protein-based and genetic testing as our standard clinical practice,” they concluded.

The study was funded by the National Institutes of Health and the Ohio Department of Health. The authors reported having no conflicts of interest.

SOURCE: Shook LM et al. Int J Neonatal Screen. 2020 Jan 31. doi: 10.3390/ijns6010007

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Confirmatory genetic testing may be useful in the diagnosis of hemoglobinopathies for newborns with an abnormal hemoglobin (Hb) pattern, according to a recent study.

The findings suggest further research is needed to evaluate whether genetic testing programs for newborns could have diagnostic value in the clinical setting.

“We studied a consecutive cohort of newborns with an ‘FSA’ pattern (a suspected diagnosis of HbSbeta+) on the initial newborn screening test,” explained Lisa M. Shook of the University of Cincinnati and colleagues. The results were published in the International Journal of Neonatal Screening.

The retrospective study included a total of 1,151 newborns with an abnormal Hb pattern, 31 of which had an FSA pattern. The newborns were screened for hemoglobinopathies from 2015 to 2018. The findings of the initial newborn screening test (a suspected diagnosis of HbSbeta+) were compared with the diagnosis established using both protein-based and genetic confirmatory testing. Protein-based testing cannot accurately detect several hemoglobinopathies in newborns, especially when beta-thalassemia mutations are involved, according to the authors.

“During this study period, genetic testing was not universally applied in advance; it was used based on clinical suspicion,” the researchers wrote.

Among newborns with an FSA pattern, the mean gestational age was 38.7 weeks. In total, 17 newborns received genetic testing, and 30 had protein-based confirmatory testing.

“In this consecutive cohort of 31 newborns with a suspected diagnosis of HbSbeta+ based on initial newborn screening (an FSA pattern), none actually had HbSbeta+. All had the sickle cell trait (HbAS), instead; that is, we found that an initial FSA pattern was much more likely to indicate a final diagnosis of HbAS than HbSbeta+,” the authors wrote.

This meant that two-thirds of these newborns had a correct diagnosis of HbAS established at 2-4 weeks of age by protein-based confirmatory testing (and confirmed by genetic testing in a subset), but that the remaining one-third still had an incorrect, suspected diagnosis of HbSbeta+. This could lead to unnecessary treatment and testing of infants and incorrect, disease-focused counseling of parents and family members, according to the authors.

Two key limitations of the study were the small sample size and retrospective design.

“Based on this experience in which genetic testing was not universally applied, we now perform simultaneous protein-based and genetic testing as our standard clinical practice,” they concluded.

The study was funded by the National Institutes of Health and the Ohio Department of Health. The authors reported having no conflicts of interest.

SOURCE: Shook LM et al. Int J Neonatal Screen. 2020 Jan 31. doi: 10.3390/ijns6010007

Confirmatory genetic testing may be useful in the diagnosis of hemoglobinopathies for newborns with an abnormal hemoglobin (Hb) pattern, according to a recent study.

The findings suggest further research is needed to evaluate whether genetic testing programs for newborns could have diagnostic value in the clinical setting.

“We studied a consecutive cohort of newborns with an ‘FSA’ pattern (a suspected diagnosis of HbSbeta+) on the initial newborn screening test,” explained Lisa M. Shook of the University of Cincinnati and colleagues. The results were published in the International Journal of Neonatal Screening.

The retrospective study included a total of 1,151 newborns with an abnormal Hb pattern, 31 of which had an FSA pattern. The newborns were screened for hemoglobinopathies from 2015 to 2018. The findings of the initial newborn screening test (a suspected diagnosis of HbSbeta+) were compared with the diagnosis established using both protein-based and genetic confirmatory testing. Protein-based testing cannot accurately detect several hemoglobinopathies in newborns, especially when beta-thalassemia mutations are involved, according to the authors.

“During this study period, genetic testing was not universally applied in advance; it was used based on clinical suspicion,” the researchers wrote.

Among newborns with an FSA pattern, the mean gestational age was 38.7 weeks. In total, 17 newborns received genetic testing, and 30 had protein-based confirmatory testing.

“In this consecutive cohort of 31 newborns with a suspected diagnosis of HbSbeta+ based on initial newborn screening (an FSA pattern), none actually had HbSbeta+. All had the sickle cell trait (HbAS), instead; that is, we found that an initial FSA pattern was much more likely to indicate a final diagnosis of HbAS than HbSbeta+,” the authors wrote.

This meant that two-thirds of these newborns had a correct diagnosis of HbAS established at 2-4 weeks of age by protein-based confirmatory testing (and confirmed by genetic testing in a subset), but that the remaining one-third still had an incorrect, suspected diagnosis of HbSbeta+. This could lead to unnecessary treatment and testing of infants and incorrect, disease-focused counseling of parents and family members, according to the authors.

Two key limitations of the study were the small sample size and retrospective design.

“Based on this experience in which genetic testing was not universally applied, we now perform simultaneous protein-based and genetic testing as our standard clinical practice,” they concluded.

The study was funded by the National Institutes of Health and the Ohio Department of Health. The authors reported having no conflicts of interest.

SOURCE: Shook LM et al. Int J Neonatal Screen. 2020 Jan 31. doi: 10.3390/ijns6010007

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FROM THE INTERNATIONAL JOURNAL OF NEONATAL SCREENING

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Fear drives activity changes in hemophilia patients

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Fear of negative events can drive changes in activity levels among patients with hemophilia A, results of the HemACTIVE study suggest.

Mark Skinner

Patients were more likely to adjust their level of physical activity due to fear of bleeding and joint damage rather than previously experienced bleeding or joint damage.

However, past experience was more likely than fear to make patients stop physical activities altogether.

Mark Skinner, of the Institute for Policy Advancement in Washington, D.C., and colleagues presented these findings in a poster from the annual congress of the European Association for Haemophilia and Allied Disorders.

Mr. Skinner, who is a hemophilia patient himself, said the goal of the HemACTIVE study is to better understand how hemophilia affects patients’ lives.

“We wanted to understand the limitations, challenges, and compromises of individuals living with hemophilia,” Mr. Skinner said. “What has motivated them or prevented them from living more full, active lives doing the kind of work, leisure, and social activities that those without hemophilia do? Is it treatment choice, is it satisfaction with treatment, is it fear?

“We wanted to do a comprehensive study that really looked at the intersection of treatment adherence and satisfaction, the emotional components that relate to those decisions, and the challenges and compromises so that we could better identify what we need to consider as patients think about either changing their therapy or changing their treatment regimen on existing therapy.”

Previous results from the HemACTIVE study showed that, although activity levels differed among hemophilia patients, all patients surveyed wanted greater activity levels, better protection from bleeding, better pain relief, and less-frequent infusions (EAHAD 2019, Abstract P084). In addition, patients who used factor VIII products with an extended half-life were more active and more likely to adhere to their prescribed treatment (ISTH 2019, Abstract PB0210).

The results reported at EAHAD 2020 focus on patients’ reasons for modifying physical activity. Patients and caregivers completed a screening phone interview, followed by a 25-minute, web-based questionnaire on patient activity.

There were 275 respondents – 194 patients with hemophilia A and 81 caregivers – from Canada, France, Germany, Italy, and the United States. Patients had severe (61%) or moderate (39%) hemophilia A, and most (67%) were receiving prophylaxis.

Most patients (70%) were “active” or “extremely/very active,” 77% of patients adjusted their activities because of their hemophilia, and nearly half of patients stopped activities because of their disease.

Fear drives adjustments in activity

Patients were sometimes more likely to adjust their activities based on fear of experiencing an event, as opposed to previously experiencing that event.

Specifically, 44% of patients adjusted their activities due to fear of joint damage, compared with 36% of patients who made adjustments because of past significant joint damage.

Similarly, 41% of patients adjusted activities due to fear of breakthrough bleeds, compared with 36% of patients who made adjustments because of past experience with bleeds and 25% who made adjustments because of significant past bleeds.

On the other hand, a similar percentage of patients adjusted activities because of past experience with pain (43%) and fear of pain (41%). And a similar percentage of patients adjusted activities because of existing joint damage restrictions (35%) and fear of joint deterioration (32%).

 

 

Past experience prompts discontinuation of activity

Overall, 47% of patients said anxiety was the most common emotional reason for stopping physical activities. However, patients were consistently more likely to stop activities because of past experience rather than fear or anxiety.

Specifically, 50% of patients stopped activities because of significant past joint damage, 46% stopped because of developing joint problems, and 38% stopped due to fear of joint damage.

More patients stopped activities because of significant past bleeds (41%) rather than fear of breakthrough bleeds (26%). More patients stopped activities because they developed chronic pain (38%) rather than fear of pain (less than 15%). And more patients stopped activities because of existing joint damage restrictions (62%) rather than fear of joint damage (34%).
 

Applying results to practice: Changing the conversation

Ideally, these findings would be used to promote individualized treatment of hemophilia driven by patients’ goals, Mr. Skinner said. By better understanding patients’ feelings and motivations, clinicians may devise more personalized treatment regimens that align with patients’ goals and improve their quality of life.

Rather than adjusting treatment based only on “hard metrics” such as bleeding events, “we need to take a more holistic approach to looking at outcomes that are more important to patients,” Mr. Skinner said. This type of approach is particularly important to Mr. Skinner as someone who has severe hemophilia A.

“Because hemophilia is a life-long disease, and you’re born with it, you make conscious or unconscious adaptations throughout your life,” he explained. “Your expectations or aspirations adjust to what you’ve been told you can or cannot do because of your hemophilia. The choices I made for my career, where I live, the type of vacations I go on, the type of sports I participate in have all been limited over the course of time, which has meant that I’ve made compromises. There are a lot of individuals with hemophilia who are making decisions that are not what their life goals are.

“What this research helps me understand is that we can change the conversation and build it around an individual patient and understand what their aspirations are. If a clinician understands what I’m wanting to achieve in life … we can build a treatment regime around helping me achieve those goals. That is known to improve adherence.

“The goal, really, is to have hemophilia as a secondary consideration. Instead of saying: ‘You have hemophilia, so these are the options available to you,’ you can say, ‘what is it that you would like to achieve, and then we’ll figure out how your treatment for hemophilia can be adjusted to help you achieve those goals.’ It may sound like a nuance, but it really is reversing the conversation. The goal setting first versus your disease comes first.”

The HemACTIVE study was supported by Bayer. Mr. Skinner disclosed relationships with Bayer and other pharmaceutical companies.

SOURCE: Skinner M et al. EAHAD 2020, Abstract P304.

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Fear of negative events can drive changes in activity levels among patients with hemophilia A, results of the HemACTIVE study suggest.

Mark Skinner

Patients were more likely to adjust their level of physical activity due to fear of bleeding and joint damage rather than previously experienced bleeding or joint damage.

However, past experience was more likely than fear to make patients stop physical activities altogether.

Mark Skinner, of the Institute for Policy Advancement in Washington, D.C., and colleagues presented these findings in a poster from the annual congress of the European Association for Haemophilia and Allied Disorders.

Mr. Skinner, who is a hemophilia patient himself, said the goal of the HemACTIVE study is to better understand how hemophilia affects patients’ lives.

“We wanted to understand the limitations, challenges, and compromises of individuals living with hemophilia,” Mr. Skinner said. “What has motivated them or prevented them from living more full, active lives doing the kind of work, leisure, and social activities that those without hemophilia do? Is it treatment choice, is it satisfaction with treatment, is it fear?

“We wanted to do a comprehensive study that really looked at the intersection of treatment adherence and satisfaction, the emotional components that relate to those decisions, and the challenges and compromises so that we could better identify what we need to consider as patients think about either changing their therapy or changing their treatment regimen on existing therapy.”

Previous results from the HemACTIVE study showed that, although activity levels differed among hemophilia patients, all patients surveyed wanted greater activity levels, better protection from bleeding, better pain relief, and less-frequent infusions (EAHAD 2019, Abstract P084). In addition, patients who used factor VIII products with an extended half-life were more active and more likely to adhere to their prescribed treatment (ISTH 2019, Abstract PB0210).

The results reported at EAHAD 2020 focus on patients’ reasons for modifying physical activity. Patients and caregivers completed a screening phone interview, followed by a 25-minute, web-based questionnaire on patient activity.

There were 275 respondents – 194 patients with hemophilia A and 81 caregivers – from Canada, France, Germany, Italy, and the United States. Patients had severe (61%) or moderate (39%) hemophilia A, and most (67%) were receiving prophylaxis.

Most patients (70%) were “active” or “extremely/very active,” 77% of patients adjusted their activities because of their hemophilia, and nearly half of patients stopped activities because of their disease.

Fear drives adjustments in activity

Patients were sometimes more likely to adjust their activities based on fear of experiencing an event, as opposed to previously experiencing that event.

Specifically, 44% of patients adjusted their activities due to fear of joint damage, compared with 36% of patients who made adjustments because of past significant joint damage.

Similarly, 41% of patients adjusted activities due to fear of breakthrough bleeds, compared with 36% of patients who made adjustments because of past experience with bleeds and 25% who made adjustments because of significant past bleeds.

On the other hand, a similar percentage of patients adjusted activities because of past experience with pain (43%) and fear of pain (41%). And a similar percentage of patients adjusted activities because of existing joint damage restrictions (35%) and fear of joint deterioration (32%).

 

 

Past experience prompts discontinuation of activity

Overall, 47% of patients said anxiety was the most common emotional reason for stopping physical activities. However, patients were consistently more likely to stop activities because of past experience rather than fear or anxiety.

Specifically, 50% of patients stopped activities because of significant past joint damage, 46% stopped because of developing joint problems, and 38% stopped due to fear of joint damage.

More patients stopped activities because of significant past bleeds (41%) rather than fear of breakthrough bleeds (26%). More patients stopped activities because they developed chronic pain (38%) rather than fear of pain (less than 15%). And more patients stopped activities because of existing joint damage restrictions (62%) rather than fear of joint damage (34%).
 

Applying results to practice: Changing the conversation

Ideally, these findings would be used to promote individualized treatment of hemophilia driven by patients’ goals, Mr. Skinner said. By better understanding patients’ feelings and motivations, clinicians may devise more personalized treatment regimens that align with patients’ goals and improve their quality of life.

Rather than adjusting treatment based only on “hard metrics” such as bleeding events, “we need to take a more holistic approach to looking at outcomes that are more important to patients,” Mr. Skinner said. This type of approach is particularly important to Mr. Skinner as someone who has severe hemophilia A.

“Because hemophilia is a life-long disease, and you’re born with it, you make conscious or unconscious adaptations throughout your life,” he explained. “Your expectations or aspirations adjust to what you’ve been told you can or cannot do because of your hemophilia. The choices I made for my career, where I live, the type of vacations I go on, the type of sports I participate in have all been limited over the course of time, which has meant that I’ve made compromises. There are a lot of individuals with hemophilia who are making decisions that are not what their life goals are.

“What this research helps me understand is that we can change the conversation and build it around an individual patient and understand what their aspirations are. If a clinician understands what I’m wanting to achieve in life … we can build a treatment regime around helping me achieve those goals. That is known to improve adherence.

“The goal, really, is to have hemophilia as a secondary consideration. Instead of saying: ‘You have hemophilia, so these are the options available to you,’ you can say, ‘what is it that you would like to achieve, and then we’ll figure out how your treatment for hemophilia can be adjusted to help you achieve those goals.’ It may sound like a nuance, but it really is reversing the conversation. The goal setting first versus your disease comes first.”

The HemACTIVE study was supported by Bayer. Mr. Skinner disclosed relationships with Bayer and other pharmaceutical companies.

SOURCE: Skinner M et al. EAHAD 2020, Abstract P304.

Fear of negative events can drive changes in activity levels among patients with hemophilia A, results of the HemACTIVE study suggest.

Mark Skinner

Patients were more likely to adjust their level of physical activity due to fear of bleeding and joint damage rather than previously experienced bleeding or joint damage.

However, past experience was more likely than fear to make patients stop physical activities altogether.

Mark Skinner, of the Institute for Policy Advancement in Washington, D.C., and colleagues presented these findings in a poster from the annual congress of the European Association for Haemophilia and Allied Disorders.

Mr. Skinner, who is a hemophilia patient himself, said the goal of the HemACTIVE study is to better understand how hemophilia affects patients’ lives.

“We wanted to understand the limitations, challenges, and compromises of individuals living with hemophilia,” Mr. Skinner said. “What has motivated them or prevented them from living more full, active lives doing the kind of work, leisure, and social activities that those without hemophilia do? Is it treatment choice, is it satisfaction with treatment, is it fear?

“We wanted to do a comprehensive study that really looked at the intersection of treatment adherence and satisfaction, the emotional components that relate to those decisions, and the challenges and compromises so that we could better identify what we need to consider as patients think about either changing their therapy or changing their treatment regimen on existing therapy.”

Previous results from the HemACTIVE study showed that, although activity levels differed among hemophilia patients, all patients surveyed wanted greater activity levels, better protection from bleeding, better pain relief, and less-frequent infusions (EAHAD 2019, Abstract P084). In addition, patients who used factor VIII products with an extended half-life were more active and more likely to adhere to their prescribed treatment (ISTH 2019, Abstract PB0210).

The results reported at EAHAD 2020 focus on patients’ reasons for modifying physical activity. Patients and caregivers completed a screening phone interview, followed by a 25-minute, web-based questionnaire on patient activity.

There were 275 respondents – 194 patients with hemophilia A and 81 caregivers – from Canada, France, Germany, Italy, and the United States. Patients had severe (61%) or moderate (39%) hemophilia A, and most (67%) were receiving prophylaxis.

Most patients (70%) were “active” or “extremely/very active,” 77% of patients adjusted their activities because of their hemophilia, and nearly half of patients stopped activities because of their disease.

Fear drives adjustments in activity

Patients were sometimes more likely to adjust their activities based on fear of experiencing an event, as opposed to previously experiencing that event.

Specifically, 44% of patients adjusted their activities due to fear of joint damage, compared with 36% of patients who made adjustments because of past significant joint damage.

Similarly, 41% of patients adjusted activities due to fear of breakthrough bleeds, compared with 36% of patients who made adjustments because of past experience with bleeds and 25% who made adjustments because of significant past bleeds.

On the other hand, a similar percentage of patients adjusted activities because of past experience with pain (43%) and fear of pain (41%). And a similar percentage of patients adjusted activities because of existing joint damage restrictions (35%) and fear of joint deterioration (32%).

 

 

Past experience prompts discontinuation of activity

Overall, 47% of patients said anxiety was the most common emotional reason for stopping physical activities. However, patients were consistently more likely to stop activities because of past experience rather than fear or anxiety.

Specifically, 50% of patients stopped activities because of significant past joint damage, 46% stopped because of developing joint problems, and 38% stopped due to fear of joint damage.

More patients stopped activities because of significant past bleeds (41%) rather than fear of breakthrough bleeds (26%). More patients stopped activities because they developed chronic pain (38%) rather than fear of pain (less than 15%). And more patients stopped activities because of existing joint damage restrictions (62%) rather than fear of joint damage (34%).
 

Applying results to practice: Changing the conversation

Ideally, these findings would be used to promote individualized treatment of hemophilia driven by patients’ goals, Mr. Skinner said. By better understanding patients’ feelings and motivations, clinicians may devise more personalized treatment regimens that align with patients’ goals and improve their quality of life.

Rather than adjusting treatment based only on “hard metrics” such as bleeding events, “we need to take a more holistic approach to looking at outcomes that are more important to patients,” Mr. Skinner said. This type of approach is particularly important to Mr. Skinner as someone who has severe hemophilia A.

“Because hemophilia is a life-long disease, and you’re born with it, you make conscious or unconscious adaptations throughout your life,” he explained. “Your expectations or aspirations adjust to what you’ve been told you can or cannot do because of your hemophilia. The choices I made for my career, where I live, the type of vacations I go on, the type of sports I participate in have all been limited over the course of time, which has meant that I’ve made compromises. There are a lot of individuals with hemophilia who are making decisions that are not what their life goals are.

“What this research helps me understand is that we can change the conversation and build it around an individual patient and understand what their aspirations are. If a clinician understands what I’m wanting to achieve in life … we can build a treatment regime around helping me achieve those goals. That is known to improve adherence.

“The goal, really, is to have hemophilia as a secondary consideration. Instead of saying: ‘You have hemophilia, so these are the options available to you,’ you can say, ‘what is it that you would like to achieve, and then we’ll figure out how your treatment for hemophilia can be adjusted to help you achieve those goals.’ It may sound like a nuance, but it really is reversing the conversation. The goal setting first versus your disease comes first.”

The HemACTIVE study was supported by Bayer. Mr. Skinner disclosed relationships with Bayer and other pharmaceutical companies.

SOURCE: Skinner M et al. EAHAD 2020, Abstract P304.

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Coronavirus outbreak: Putting it into perspective

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References

  1. Centers for Disease Control and Prevention. 2019 novel coronavirus. https://www.cdc.gov/coronavirus/2019-nCoV/hcp/index.html. Last reviewed February 8, 2020. Accessed February 9, 2020.
  2. World Health Organization. Novel coronavirus (2019-nCoV) situation as of 10 February 2020. http://who.maps.arcgis.com/apps/opsdashboard/index.html#/c88e37cfc43b4ed3baf977d77e4a0667. Accessed February 9, 2020.
  3. Centers for Disease Control and Prevention. 2019 novel coronavirus: Evaluating and reporting persons under investigation (PUI). https://www.cdc.gov/coronavirus/2019-nCoV/hcp/clinical-criteria.html Last reviewed February 3, 2020. Accessed February 9, 2020.
  4. Centers for Disease Control and Prevention. Weekly US influenza surveillance report. https://www.cdc.gov/flu/weekly/index.htm. Last reviewed February 7, 2020. Accessed February 12, 2020.
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The speaker reported no potential conflicts of interest relevant to this audiocast.

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Doug Campos-Outcalt, MD, MPA, is a clinical professor at the University of Arizona College of Medicine, a senior lecturer with the University of Arizona College of Public Health, and a member of the US Community Preventive Services Task Force. He’s also an assistant editor at The Journal of Family Practice.

The speaker reported no potential conflicts of interest relevant to this audiocast.

References

  1. Centers for Disease Control and Prevention. 2019 novel coronavirus. https://www.cdc.gov/coronavirus/2019-nCoV/hcp/index.html. Last reviewed February 8, 2020. Accessed February 9, 2020.
  2. World Health Organization. Novel coronavirus (2019-nCoV) situation as of 10 February 2020. http://who.maps.arcgis.com/apps/opsdashboard/index.html#/c88e37cfc43b4ed3baf977d77e4a0667. Accessed February 9, 2020.
  3. Centers for Disease Control and Prevention. 2019 novel coronavirus: Evaluating and reporting persons under investigation (PUI). https://www.cdc.gov/coronavirus/2019-nCoV/hcp/clinical-criteria.html Last reviewed February 3, 2020. Accessed February 9, 2020.
  4. Centers for Disease Control and Prevention. Weekly US influenza surveillance report. https://www.cdc.gov/flu/weekly/index.htm. Last reviewed February 7, 2020. Accessed February 12, 2020.

References

  1. Centers for Disease Control and Prevention. 2019 novel coronavirus. https://www.cdc.gov/coronavirus/2019-nCoV/hcp/index.html. Last reviewed February 8, 2020. Accessed February 9, 2020.
  2. World Health Organization. Novel coronavirus (2019-nCoV) situation as of 10 February 2020. http://who.maps.arcgis.com/apps/opsdashboard/index.html#/c88e37cfc43b4ed3baf977d77e4a0667. Accessed February 9, 2020.
  3. Centers for Disease Control and Prevention. 2019 novel coronavirus: Evaluating and reporting persons under investigation (PUI). https://www.cdc.gov/coronavirus/2019-nCoV/hcp/clinical-criteria.html Last reviewed February 3, 2020. Accessed February 9, 2020.
  4. Centers for Disease Control and Prevention. Weekly US influenza surveillance report. https://www.cdc.gov/flu/weekly/index.htm. Last reviewed February 7, 2020. Accessed February 12, 2020.
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The Diagnosis: Adult Colloid Milium 

A 4-mm punch biopsy was performed and histopathologic evaluation revealed collections of amorphic eosinophilic material and fissures in the papillary dermis with sparing of the dermoepidermal junction, indicating adult colloid milium (Figure 1).  

Figure 1. Histopathology revealed collections of amorphic eosinophilic material and fissures in the papillary dermis with sparing of the dermoepidermal junction (H&E, original magnification ×40).

Adult colloid milium is an uncommon condition with grouped translucent to whitish papules that present on sun-exposed skin on the hands, face, neck, or ears in middle-aged adults.1 It has been associated with petrochemical exposure, tanning bed use, and excessive sun exposure. Our patient had a history of sun exposure, specifically to the left hand while driving. This condition is widely thought to be a result of photoinduced damage to elastic fibers and may potentially be a popular variant of severe solar elastosis.2 Due to vascular fragility, trauma to these locations often will result in hemorrhage into individual lesions, as observed in our patient (Figure 2).  

Figure 2. Few hemorrhagic papules from mechanical trauma within a large collection of flesh-colored to translucent, dome-shaped papules on the left hand.

Adult colloid milium is diagnosed clinically and may mimic lichen or systemic amyloidosis, syringomas, lipoid proteinosis, molluscum contagiosum, steatocystoma multiplex, and sarcoidosis.2  

Biopsy often is helpful in determining the diagnosis. Histopathology reveals amorphous eosinophilic deposits with fissures in the papillary dermis. These deposits are thought to be remnants of degenerated elastic fibers. Stains often are helpful, as the deposits are weakly apple-green birefringent on Congo red stain and are periodic acid-Schiff and thioflavin T positive. Laminin and type IV collagen stains are negative with adult colloid milium but are positive with amyloidosis and lipoid proteinosis.3 Electron microscopy also may help distinguish between amyloidosis and adult colloid milium, as these conditions may have a similar histologic appearance.

Treatment has not proven to be consistently helpful, as cryotherapy and dermabrasion have been the mainstay of treatment, often with disappointing results.4 Laser treatment has been shown to be of some benefit in treating these lesions.2 

References
  1. Touart DM, Sau P. Cutaneous deposition diseases. part I. J Am Acad Dermatol. 1998;39(2, pt 1):149-171. 
  2. Pourrabbani S, Marra DE, Iwasaki J, et al. Colloid milium: a review and update. J Drugs Dermatol. 2007;6:293-296. 
  3. Calonje JE, Brenn T, Lazar A, et al. McKee's Pathology of the Skin. 4th ed. Philadelphia, PA: Saunders; 2012.  
  4. Netscher DT, Sharma S, Kinner BM, et al. Adult-type colloid milium of hands and face successfully treated with dermabrasion. South Med J. 1996;89:1004-1007. 
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The authors report no conflict of interest.

Correspondence: Cody Hanson, DO, 3901 Rainbow Blvd, Kansas City, KS 66160 ([email protected]).

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The authors report no conflict of interest.

Correspondence: Cody Hanson, DO, 3901 Rainbow Blvd, Kansas City, KS 66160 ([email protected]).

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Drs. Hanson, Fraga, and Rajpara are from the University of Kansas Medical Center, Kansas City. Drs. Hanson and Rajpara are from the Department of Dermatology, and Dr. Fraga is from the Department of Pathology. Dr. Moore is from Sacred Heart Medical Center, Spokane, Washington.

The authors report no conflict of interest.

Correspondence: Cody Hanson, DO, 3901 Rainbow Blvd, Kansas City, KS 66160 ([email protected]).

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The Diagnosis: Adult Colloid Milium 

A 4-mm punch biopsy was performed and histopathologic evaluation revealed collections of amorphic eosinophilic material and fissures in the papillary dermis with sparing of the dermoepidermal junction, indicating adult colloid milium (Figure 1).  

Figure 1. Histopathology revealed collections of amorphic eosinophilic material and fissures in the papillary dermis with sparing of the dermoepidermal junction (H&E, original magnification ×40).

Adult colloid milium is an uncommon condition with grouped translucent to whitish papules that present on sun-exposed skin on the hands, face, neck, or ears in middle-aged adults.1 It has been associated with petrochemical exposure, tanning bed use, and excessive sun exposure. Our patient had a history of sun exposure, specifically to the left hand while driving. This condition is widely thought to be a result of photoinduced damage to elastic fibers and may potentially be a popular variant of severe solar elastosis.2 Due to vascular fragility, trauma to these locations often will result in hemorrhage into individual lesions, as observed in our patient (Figure 2).  

Figure 2. Few hemorrhagic papules from mechanical trauma within a large collection of flesh-colored to translucent, dome-shaped papules on the left hand.

Adult colloid milium is diagnosed clinically and may mimic lichen or systemic amyloidosis, syringomas, lipoid proteinosis, molluscum contagiosum, steatocystoma multiplex, and sarcoidosis.2  

Biopsy often is helpful in determining the diagnosis. Histopathology reveals amorphous eosinophilic deposits with fissures in the papillary dermis. These deposits are thought to be remnants of degenerated elastic fibers. Stains often are helpful, as the deposits are weakly apple-green birefringent on Congo red stain and are periodic acid-Schiff and thioflavin T positive. Laminin and type IV collagen stains are negative with adult colloid milium but are positive with amyloidosis and lipoid proteinosis.3 Electron microscopy also may help distinguish between amyloidosis and adult colloid milium, as these conditions may have a similar histologic appearance.

Treatment has not proven to be consistently helpful, as cryotherapy and dermabrasion have been the mainstay of treatment, often with disappointing results.4 Laser treatment has been shown to be of some benefit in treating these lesions.2 

The Diagnosis: Adult Colloid Milium 

A 4-mm punch biopsy was performed and histopathologic evaluation revealed collections of amorphic eosinophilic material and fissures in the papillary dermis with sparing of the dermoepidermal junction, indicating adult colloid milium (Figure 1).  

Figure 1. Histopathology revealed collections of amorphic eosinophilic material and fissures in the papillary dermis with sparing of the dermoepidermal junction (H&E, original magnification ×40).

Adult colloid milium is an uncommon condition with grouped translucent to whitish papules that present on sun-exposed skin on the hands, face, neck, or ears in middle-aged adults.1 It has been associated with petrochemical exposure, tanning bed use, and excessive sun exposure. Our patient had a history of sun exposure, specifically to the left hand while driving. This condition is widely thought to be a result of photoinduced damage to elastic fibers and may potentially be a popular variant of severe solar elastosis.2 Due to vascular fragility, trauma to these locations often will result in hemorrhage into individual lesions, as observed in our patient (Figure 2).  

Figure 2. Few hemorrhagic papules from mechanical trauma within a large collection of flesh-colored to translucent, dome-shaped papules on the left hand.

Adult colloid milium is diagnosed clinically and may mimic lichen or systemic amyloidosis, syringomas, lipoid proteinosis, molluscum contagiosum, steatocystoma multiplex, and sarcoidosis.2  

Biopsy often is helpful in determining the diagnosis. Histopathology reveals amorphous eosinophilic deposits with fissures in the papillary dermis. These deposits are thought to be remnants of degenerated elastic fibers. Stains often are helpful, as the deposits are weakly apple-green birefringent on Congo red stain and are periodic acid-Schiff and thioflavin T positive. Laminin and type IV collagen stains are negative with adult colloid milium but are positive with amyloidosis and lipoid proteinosis.3 Electron microscopy also may help distinguish between amyloidosis and adult colloid milium, as these conditions may have a similar histologic appearance.

Treatment has not proven to be consistently helpful, as cryotherapy and dermabrasion have been the mainstay of treatment, often with disappointing results.4 Laser treatment has been shown to be of some benefit in treating these lesions.2 

References
  1. Touart DM, Sau P. Cutaneous deposition diseases. part I. J Am Acad Dermatol. 1998;39(2, pt 1):149-171. 
  2. Pourrabbani S, Marra DE, Iwasaki J, et al. Colloid milium: a review and update. J Drugs Dermatol. 2007;6:293-296. 
  3. Calonje JE, Brenn T, Lazar A, et al. McKee's Pathology of the Skin. 4th ed. Philadelphia, PA: Saunders; 2012.  
  4. Netscher DT, Sharma S, Kinner BM, et al. Adult-type colloid milium of hands and face successfully treated with dermabrasion. South Med J. 1996;89:1004-1007. 
References
  1. Touart DM, Sau P. Cutaneous deposition diseases. part I. J Am Acad Dermatol. 1998;39(2, pt 1):149-171. 
  2. Pourrabbani S, Marra DE, Iwasaki J, et al. Colloid milium: a review and update. J Drugs Dermatol. 2007;6:293-296. 
  3. Calonje JE, Brenn T, Lazar A, et al. McKee's Pathology of the Skin. 4th ed. Philadelphia, PA: Saunders; 2012.  
  4. Netscher DT, Sharma S, Kinner BM, et al. Adult-type colloid milium of hands and face successfully treated with dermabrasion. South Med J. 1996;89:1004-1007. 
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A 41-year-old man presented to the outpatient dermatology clinic with multiple smooth papules on the left hand of 7 years' duration. The papules had been steadily increasing in number, and the patient reported that they were frequently symptomatic with a burning itching sensation. Physical examination revealed multiple 1- to 3-mm, dome-shaped, translucent to flesh-colored papules on the left hand with a few scattered bright red papules. No similar lesions were present on the right hand or elsewhere on the body. He had a history of hypertension but was otherwise healthy with no other chronic medical conditions.  

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When Should I Refer My CKD Patient to Nephrology?

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Q) When should I refer patients with chronic kidney disease (CKD) to a nephrology specialist?

Nephrology specialists can be of particular assistance to primary care providers in treating patients who are at different stages of CKD.1 Nephrologists can help determine the etiology of CKD, recommend specific disease-related therapy, suggest treatments to delay disease progression in patients who have not responded to conventional therapies, recognize and treat for disease-related complications, and plan for renal replacement therapy.1

Indications for referral vary across guidelines but there is one commonality: Patients with a severely decreased estimated glomerular filtration rate (eGFR) of < 30 mL/min per 1.73 m2 require prompt referral to a nephrologist for comanaged care.1-4 Patients with CKD who have an eGFR at or below this threshold are likely at an advanced stage of disease and are therefore at greater risk for progression to end-stage renal disease (ESRD), which requires dialysis.1 Research shows that late referral to nephrology is associated with significantly higher rates of mortality within the first 90 days of dialysis.5 Furthermore, the Renal Physicians Association Clinical Practice Guideline states that patients with advanced CKD (stages 4 and 5) have a greater predisposition for quick progression to ESRD with multiple comorbid conditions and poor outcomes.6

Clinical outcomes can improve when referrals are made before patients with CKD register a low eGFR—but the appropriate threshold (or when to refer patients with a higher eGFR) is less clear.1 Based in part on practice guidelines,2,3,6,7 referral to a nephrologist or clinician with expertise in CKD should be considered for patients with CKD who meet 1 or more of the following criteria:

  • Urine albumin-to-creatinine ratio > 300 mg/g (34 mg/mmoL), including nephrotic syndrome
  • Hematuria that is not secondary to urologic conditions
  • Inability to identify a presumed cause of CKD
  • eGFR decline of > 30% in less than 4 months without an obvious explanation
  • Difficult-to-manage complications, such as anemia requiring erythropoietin therapy or abnormalities of bone and mineral metabolism requiring phosphorus binders or vitamin D preparations
  • Serum potassium > 5.5 mEq/L
  • Difficult-to-manage drug complications
  • Age < 18 y
  • Resistant hypertension
  • Recurrent or extensive nephrolithiasis
  • Confirmed or presumed hereditary kidney disease (eg, polycystic kidney disease, Alport syndrome, or autosomal dominant interstitial kidney disease).1,2,4,7

These criteria can aid clinicians in deciding when a preemptive referral is needed to prevent advanced CKD stages and ESRD in their patients. Also, because patients with CKD can be at high risk for adverse cardiovascular outcomes, referral to cardiology (eg, for patients with complicated cardiovascular disease) should be considered.1 –YTM

Yolanda Thompson-Martin, DNP, RN, ANP-C, FNKF
University Health Physicians/Truman Medical Center, Kansas City, Missouri

References

1. Levey AS, Inker LA. Definition and staging of chronic kidney disease in adults. UpToDate. www.uptodate.com/contents/definition-and-staging-of-chronic-kidney-disease-in-adults. Accessed January 29, 2020.
2. National Kidney Foundation. K/DOQI clinical practice guidelines for chronic kidney disease: evaluation, classification and stratification. Am J of Kidney Dis. 2002;39(suppl 1):S1-S266.
3. Kidney Disease Outcomes Quality Initiative (K/DOQI). K/DOQI clinical practice guidelines on hypertension and antihypertensive agents in chronic kidney disease. Am J Kidney Dis. 2004;43(suppl 1):11-13.
4. Luxton G; Caring for Australasians with Renal Impairment. The CARI Guidelines. Timing of referral of chronic kidney disease patients to nephrology services (adult). Nephrology (Carlton). 2010;15(suppl 1):S2-S11.
5. Jungers P, Massy Z, Nguyen-Khoa T, et al. Longer duration of predialysis nephrological care is associated with improved long-term survival of dialysis patients. Nephrol Dial Transplant. 2001;16(12):2357-2364.
6. WK Bolton. Renal Physicians Association Clinical Practice Guidelines: appropriate patient preparation for renal replacement therapy: guide line number 3. J Am Soc Nephrol. 2003;14(5):1406-1410.
7. Kidney Disease Improving Global Outcomes (KDIGO) CKD Work Group. KDIGO 2012 clinical practice guidelines for the evaluation and management of chronic kidney disease. Kidney Int. 2013;3(suppl):1-150.

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The National Kidney Foundation Council of Advanced Practitioners' (NKF-CAP) mission is to serve as an advisory resource for the NKF, nurse practitioners, physician assistants, clinical nurse specialists, and the community in advancing the care, treatment, and education of patients with kidney disease and their families. CAP is an advocate for professional development, research, and health policies that impact the delivery of patient care and professional practice. For more information on NKF-CAP, visit www.kidney.org/CAP. Renal Consult is edited by Christine Corbett, DNP, APRN, FNP-BC, CNN-NP, FNKF, Corporate Director of Advanced Practice Providers and Nurse Practitioner, Nephrology, at Truman Medical Centers, Kansas City, Missouri, and Leah Foster Smith, MSN, APRN, FNP-BC, CNN-NP, FNKF, Director of Advanced Practitioners and Nephrology Nurse Practitioner at Metrolina Nephrology Associates, PA, in Charlotte, North Carolina. This month's column was authored by Yolanda Thompson-Martin, who practices at University Health Physicians/Truman Medical Center, Kansas City, Missouri.

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The National Kidney Foundation Council of Advanced Practitioners' (NKF-CAP) mission is to serve as an advisory resource for the NKF, nurse practitioners, physician assistants, clinical nurse specialists, and the community in advancing the care, treatment, and education of patients with kidney disease and their families. CAP is an advocate for professional development, research, and health policies that impact the delivery of patient care and professional practice. For more information on NKF-CAP, visit www.kidney.org/CAP. Renal Consult is edited by Christine Corbett, DNP, APRN, FNP-BC, CNN-NP, FNKF, Corporate Director of Advanced Practice Providers and Nurse Practitioner, Nephrology, at Truman Medical Centers, Kansas City, Missouri, and Leah Foster Smith, MSN, APRN, FNP-BC, CNN-NP, FNKF, Director of Advanced Practitioners and Nephrology Nurse Practitioner at Metrolina Nephrology Associates, PA, in Charlotte, North Carolina. This month's column was authored by Yolanda Thompson-Martin, who practices at University Health Physicians/Truman Medical Center, Kansas City, Missouri.

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The National Kidney Foundation Council of Advanced Practitioners' (NKF-CAP) mission is to serve as an advisory resource for the NKF, nurse practitioners, physician assistants, clinical nurse specialists, and the community in advancing the care, treatment, and education of patients with kidney disease and their families. CAP is an advocate for professional development, research, and health policies that impact the delivery of patient care and professional practice. For more information on NKF-CAP, visit www.kidney.org/CAP. Renal Consult is edited by Christine Corbett, DNP, APRN, FNP-BC, CNN-NP, FNKF, Corporate Director of Advanced Practice Providers and Nurse Practitioner, Nephrology, at Truman Medical Centers, Kansas City, Missouri, and Leah Foster Smith, MSN, APRN, FNP-BC, CNN-NP, FNKF, Director of Advanced Practitioners and Nephrology Nurse Practitioner at Metrolina Nephrology Associates, PA, in Charlotte, North Carolina. This month's column was authored by Yolanda Thompson-Martin, who practices at University Health Physicians/Truman Medical Center, Kansas City, Missouri.

Q) When should I refer patients with chronic kidney disease (CKD) to a nephrology specialist?

Nephrology specialists can be of particular assistance to primary care providers in treating patients who are at different stages of CKD.1 Nephrologists can help determine the etiology of CKD, recommend specific disease-related therapy, suggest treatments to delay disease progression in patients who have not responded to conventional therapies, recognize and treat for disease-related complications, and plan for renal replacement therapy.1

Indications for referral vary across guidelines but there is one commonality: Patients with a severely decreased estimated glomerular filtration rate (eGFR) of < 30 mL/min per 1.73 m2 require prompt referral to a nephrologist for comanaged care.1-4 Patients with CKD who have an eGFR at or below this threshold are likely at an advanced stage of disease and are therefore at greater risk for progression to end-stage renal disease (ESRD), which requires dialysis.1 Research shows that late referral to nephrology is associated with significantly higher rates of mortality within the first 90 days of dialysis.5 Furthermore, the Renal Physicians Association Clinical Practice Guideline states that patients with advanced CKD (stages 4 and 5) have a greater predisposition for quick progression to ESRD with multiple comorbid conditions and poor outcomes.6

Clinical outcomes can improve when referrals are made before patients with CKD register a low eGFR—but the appropriate threshold (or when to refer patients with a higher eGFR) is less clear.1 Based in part on practice guidelines,2,3,6,7 referral to a nephrologist or clinician with expertise in CKD should be considered for patients with CKD who meet 1 or more of the following criteria:

  • Urine albumin-to-creatinine ratio > 300 mg/g (34 mg/mmoL), including nephrotic syndrome
  • Hematuria that is not secondary to urologic conditions
  • Inability to identify a presumed cause of CKD
  • eGFR decline of > 30% in less than 4 months without an obvious explanation
  • Difficult-to-manage complications, such as anemia requiring erythropoietin therapy or abnormalities of bone and mineral metabolism requiring phosphorus binders or vitamin D preparations
  • Serum potassium > 5.5 mEq/L
  • Difficult-to-manage drug complications
  • Age < 18 y
  • Resistant hypertension
  • Recurrent or extensive nephrolithiasis
  • Confirmed or presumed hereditary kidney disease (eg, polycystic kidney disease, Alport syndrome, or autosomal dominant interstitial kidney disease).1,2,4,7

These criteria can aid clinicians in deciding when a preemptive referral is needed to prevent advanced CKD stages and ESRD in their patients. Also, because patients with CKD can be at high risk for adverse cardiovascular outcomes, referral to cardiology (eg, for patients with complicated cardiovascular disease) should be considered.1 –YTM

Yolanda Thompson-Martin, DNP, RN, ANP-C, FNKF
University Health Physicians/Truman Medical Center, Kansas City, Missouri

Q) When should I refer patients with chronic kidney disease (CKD) to a nephrology specialist?

Nephrology specialists can be of particular assistance to primary care providers in treating patients who are at different stages of CKD.1 Nephrologists can help determine the etiology of CKD, recommend specific disease-related therapy, suggest treatments to delay disease progression in patients who have not responded to conventional therapies, recognize and treat for disease-related complications, and plan for renal replacement therapy.1

Indications for referral vary across guidelines but there is one commonality: Patients with a severely decreased estimated glomerular filtration rate (eGFR) of < 30 mL/min per 1.73 m2 require prompt referral to a nephrologist for comanaged care.1-4 Patients with CKD who have an eGFR at or below this threshold are likely at an advanced stage of disease and are therefore at greater risk for progression to end-stage renal disease (ESRD), which requires dialysis.1 Research shows that late referral to nephrology is associated with significantly higher rates of mortality within the first 90 days of dialysis.5 Furthermore, the Renal Physicians Association Clinical Practice Guideline states that patients with advanced CKD (stages 4 and 5) have a greater predisposition for quick progression to ESRD with multiple comorbid conditions and poor outcomes.6

Clinical outcomes can improve when referrals are made before patients with CKD register a low eGFR—but the appropriate threshold (or when to refer patients with a higher eGFR) is less clear.1 Based in part on practice guidelines,2,3,6,7 referral to a nephrologist or clinician with expertise in CKD should be considered for patients with CKD who meet 1 or more of the following criteria:

  • Urine albumin-to-creatinine ratio > 300 mg/g (34 mg/mmoL), including nephrotic syndrome
  • Hematuria that is not secondary to urologic conditions
  • Inability to identify a presumed cause of CKD
  • eGFR decline of > 30% in less than 4 months without an obvious explanation
  • Difficult-to-manage complications, such as anemia requiring erythropoietin therapy or abnormalities of bone and mineral metabolism requiring phosphorus binders or vitamin D preparations
  • Serum potassium > 5.5 mEq/L
  • Difficult-to-manage drug complications
  • Age < 18 y
  • Resistant hypertension
  • Recurrent or extensive nephrolithiasis
  • Confirmed or presumed hereditary kidney disease (eg, polycystic kidney disease, Alport syndrome, or autosomal dominant interstitial kidney disease).1,2,4,7

These criteria can aid clinicians in deciding when a preemptive referral is needed to prevent advanced CKD stages and ESRD in their patients. Also, because patients with CKD can be at high risk for adverse cardiovascular outcomes, referral to cardiology (eg, for patients with complicated cardiovascular disease) should be considered.1 –YTM

Yolanda Thompson-Martin, DNP, RN, ANP-C, FNKF
University Health Physicians/Truman Medical Center, Kansas City, Missouri

References

1. Levey AS, Inker LA. Definition and staging of chronic kidney disease in adults. UpToDate. www.uptodate.com/contents/definition-and-staging-of-chronic-kidney-disease-in-adults. Accessed January 29, 2020.
2. National Kidney Foundation. K/DOQI clinical practice guidelines for chronic kidney disease: evaluation, classification and stratification. Am J of Kidney Dis. 2002;39(suppl 1):S1-S266.
3. Kidney Disease Outcomes Quality Initiative (K/DOQI). K/DOQI clinical practice guidelines on hypertension and antihypertensive agents in chronic kidney disease. Am J Kidney Dis. 2004;43(suppl 1):11-13.
4. Luxton G; Caring for Australasians with Renal Impairment. The CARI Guidelines. Timing of referral of chronic kidney disease patients to nephrology services (adult). Nephrology (Carlton). 2010;15(suppl 1):S2-S11.
5. Jungers P, Massy Z, Nguyen-Khoa T, et al. Longer duration of predialysis nephrological care is associated with improved long-term survival of dialysis patients. Nephrol Dial Transplant. 2001;16(12):2357-2364.
6. WK Bolton. Renal Physicians Association Clinical Practice Guidelines: appropriate patient preparation for renal replacement therapy: guide line number 3. J Am Soc Nephrol. 2003;14(5):1406-1410.
7. Kidney Disease Improving Global Outcomes (KDIGO) CKD Work Group. KDIGO 2012 clinical practice guidelines for the evaluation and management of chronic kidney disease. Kidney Int. 2013;3(suppl):1-150.

References

1. Levey AS, Inker LA. Definition and staging of chronic kidney disease in adults. UpToDate. www.uptodate.com/contents/definition-and-staging-of-chronic-kidney-disease-in-adults. Accessed January 29, 2020.
2. National Kidney Foundation. K/DOQI clinical practice guidelines for chronic kidney disease: evaluation, classification and stratification. Am J of Kidney Dis. 2002;39(suppl 1):S1-S266.
3. Kidney Disease Outcomes Quality Initiative (K/DOQI). K/DOQI clinical practice guidelines on hypertension and antihypertensive agents in chronic kidney disease. Am J Kidney Dis. 2004;43(suppl 1):11-13.
4. Luxton G; Caring for Australasians with Renal Impairment. The CARI Guidelines. Timing of referral of chronic kidney disease patients to nephrology services (adult). Nephrology (Carlton). 2010;15(suppl 1):S2-S11.
5. Jungers P, Massy Z, Nguyen-Khoa T, et al. Longer duration of predialysis nephrological care is associated with improved long-term survival of dialysis patients. Nephrol Dial Transplant. 2001;16(12):2357-2364.
6. WK Bolton. Renal Physicians Association Clinical Practice Guidelines: appropriate patient preparation for renal replacement therapy: guide line number 3. J Am Soc Nephrol. 2003;14(5):1406-1410.
7. Kidney Disease Improving Global Outcomes (KDIGO) CKD Work Group. KDIGO 2012 clinical practice guidelines for the evaluation and management of chronic kidney disease. Kidney Int. 2013;3(suppl):1-150.

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Resurgence of black lung among U.S. coal miners

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The findings and conclusions in this report are those of the author(s) and do not necessarily represent the official position of the National Institute for Occupational Safety and Health, Centers for Disease Control and Prevention.  
Advances in technology over the last century, as well as the exportation of many high exposure jobs, nearly eliminated lung diseases caused by occupational exposure to respirable dust (the pneumoconioses) in the United States. One such example of this near elimination is black lung, or coal workers' pneumoconiosis (CWP), following the 1969 Federal Coal Mine Health and Safety Act. The Act established permissible exposure limits to respirable dust, designed to prevent the most severe forms of CWP from occurring, and a national respiratory health screening program for underground coal miners. Between 1970 and the mid-1990s, disease prevalence plummeted from nearly 35% to less than 5% prevalence among longer tenured miners, and from 3% to less than 1% in miners with less than 10 years of mining tenure (Hall NB, et al. Curr Environ Health Rep. 2019;6[3]:137).

Dr. Cara N. Halldin
 
Many assumed that this was the last we'd hear of black lung - that the cases of disease existing in the 1990s were likely caused by exposures that occurred prior to the 1969 Act, and within a few years, no further cases would be detected. This appeared to be an entirely reasonable assumption in the 1990s given the 30 years of declining prevalence and the continuous technological advances designed to continue reductions in dust exposures. In fact, the precipitous decline in black lung was briefly viewed as a public health triumph, as the most severe forms appeared to be near eradication in the United States just 2 decades ago (Attfield MD, et al. Am J Public Health. 1992;82[7]:971; Attfield MD, et al. Am J Public Health. 1992;82[7]:964). However, what has since been observed is a strong and ongoing resurgence of the potentially deadly fibrotic interstitial disease starting in the early 2000s (Figure 1), with the most striking increase observed in the Central Appalachian states of Kentucky, Virginia, and West Virginia (Blackley DJ, et al. Am J Respir Crit Care Med. 2014;190[6]:708; Blackley DJ, et al. Am J Public Health. 2018;108[9]:1220).  
Of great concern is the resurgence of complicated Black Lung (progressive massive fibrosis [PMF]), which is completely disabling and leads to premature mortality. The prevalence of PMF is higher today than when NIOSH started formally tracking the disease in the 1970s, especially among specific populations. 
Since the mid-2000s, NIOSH and others have described the following(Hall NB, et al. Curr Environ Health Rep. 2019;6[3]:137): 
·    Increasing prevalence and severity of CWP both nationwide and specifically in Central Appalachia. 
·    Rapid progression of CWP. 
·    Increases in the frequency of lung transplantation for CWP.  
·    Severe disease among surface coal miners with no underground mining tenure. 
·    Increased severity of disease among former and retired miners. 
·    Hundreds of cases of PMF among coal miners seeking care at clinics in eastern Kentucky and southwestern Virginia. 
·    Increasing numbers of miners with PMF filing for federal black lung compensation. 
·    Radiologic and pathologic indications of increased respirable silica exposure among coal miners. 
·    Premature mortality in miners diagnosed with CWP. 
·    Underutilization of a secondary prevention worker removal program designed to reduce the exposure of miners with disease. 
·    Former miners with severe disease describing extreme pressure to operate. outside of applicable protective federal standards in order to increase productivity 
In our surveillance work, we have talked to many miners who, after having months or years' worth of extensive workups for pneumonia, sarcoidosis, lung cancer, and/or diseases other than the pneumoconioses, have eventually learned that they actually had dust-induced lung disease attributable to their work. Additionally, through our evaluation of the transplantation data, it has become clear that dust-related lung disease is likely underreported or underrecognized among those receiving lung transplants. Finally, through analysis of mortality data, it is apparent that CWP is also underreported as a cause of death among miners with black lung. We mention these points to emphasize how important it is to document a full occupational history for proper diagnoses, early intervention, and improved public health information to inform primary and secondary disease prevention efforts.  


Resources for clinicians  

CWP is most commonly identified using plain posterior-anterior chest radiography and presence/severity of fibrotic change is described using an international standard established by the International Labour Office (International Labour Office. Guidelines for the use of the ILO international classification of radiographs of pneumoconioses. Geneva: International Labour Office; 2011). In the United States, NIOSH operates the B Reader Training and Certification Program, which offers a free self-study syllabus, https://www.cdc.gov/niosh/topics/chestradiography/breader.html, and in-person training courses on occasion, to assist physicians in learning and demonstrating continuous competency in classifying chest radiographs of dust-exposed workers according to the ILO Standards (Halldin CN, et al. J Occup Environ Med. 2019;61[12]:1045). The B Reader Program and ILO Standards are currently undergoing a decade-long revision process where both will feature digitally acquired chest radiograph images. This process should be fully complete in the following months. 
To educate miners, mine operators, and others about the risks of respirable dust, NIOSH produced an educational video, Faces of Black Lung, in 2008 that featured two miners in their 50s and 60s who had complicated Black Lung. Because of the resurgence of disease and particularly severe cases being identified among much younger miners, NIOSH recently released an updated version of the video, Faces of Black Lung II, where three Kentucky underground miners, ages 39, 42, and 48, describe the incredible disability and quality of life lost due to a disease caused by gross overexposure of respirable coal mine dust.  
Unfortunately, the 42-year-old miner died from complications stemming from Black Lung less than a year after filming his part in the video, and the other two miners have been advised to be evaluated for lung transplantation. We hope that these men's stories will help younger miners relate to the risks of respirable coal mine dust and help others understand the severity of disease as all three of these men struggled to breathe just describing their day to day tasks.

 
Parting message 

No one should ever have to consider a lung transplant at the age of 40 because they went to work attempting to provide for their family. No one should ever be faced with end-of-life planning while their kids are in grade school because of a disease they acquired at work. Respirable coal mine dust is the only cause of black lung, and the coal mining industry has the necessary technology and tools to prevent harmful exposures to respirable dust, and, together with miners, must successfully and consistently implement dust suppression controls. There is no cure for black lung; it's irreversible and can be first recognized and continue to progress even after a miner has left exposure. However, early identification and appropriate intervention can prevent progression to the most disabling manifestations. The role of the clinician is to be part of the early identification of black lung through including CWP in the differential diagnosis for unusual or unexpected respiratory illness in otherwise healthy primarily working aged miners. The public health community must continue to monitor disease prevalence in working populations and implement policies and recommendations to support the efforts of those on the frontline - the miners, industry, and health-care workers.  
The Energy Information Agency projects that coal will continue to be a substantial source of U.S. energy production and consumption well into the mid- to late-century. Unfortunately, Black Lung has made a resurgence and is killing miners, and each of us has a role to play in eliminating it once and for all. We will continue to carry out our mandate to screen working coal miners for respiratory disease; however, given the continued contraction of the coal mining industry, it's much more likely for cases of disease to be recognized in the clinic setting. Therefore, we reiterate our previous plea to clinicians: when identifying an individual with interstitial fibrosis consider their full occupational history. 
 
Dr. Halldin and Dr. Laney are from the Surveillance Branch, Respiratory Health Division, National Institute for Occupational Safety and Health, Centers for Disease Control and Prevention, Morgantown, WV.

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The findings and conclusions in this report are those of the author(s) and do not necessarily represent the official position of the National Institute for Occupational Safety and Health, Centers for Disease Control and Prevention.  
Advances in technology over the last century, as well as the exportation of many high exposure jobs, nearly eliminated lung diseases caused by occupational exposure to respirable dust (the pneumoconioses) in the United States. One such example of this near elimination is black lung, or coal workers' pneumoconiosis (CWP), following the 1969 Federal Coal Mine Health and Safety Act. The Act established permissible exposure limits to respirable dust, designed to prevent the most severe forms of CWP from occurring, and a national respiratory health screening program for underground coal miners. Between 1970 and the mid-1990s, disease prevalence plummeted from nearly 35% to less than 5% prevalence among longer tenured miners, and from 3% to less than 1% in miners with less than 10 years of mining tenure (Hall NB, et al. Curr Environ Health Rep. 2019;6[3]:137).

Dr. Cara N. Halldin
 
Many assumed that this was the last we'd hear of black lung - that the cases of disease existing in the 1990s were likely caused by exposures that occurred prior to the 1969 Act, and within a few years, no further cases would be detected. This appeared to be an entirely reasonable assumption in the 1990s given the 30 years of declining prevalence and the continuous technological advances designed to continue reductions in dust exposures. In fact, the precipitous decline in black lung was briefly viewed as a public health triumph, as the most severe forms appeared to be near eradication in the United States just 2 decades ago (Attfield MD, et al. Am J Public Health. 1992;82[7]:971; Attfield MD, et al. Am J Public Health. 1992;82[7]:964). However, what has since been observed is a strong and ongoing resurgence of the potentially deadly fibrotic interstitial disease starting in the early 2000s (Figure 1), with the most striking increase observed in the Central Appalachian states of Kentucky, Virginia, and West Virginia (Blackley DJ, et al. Am J Respir Crit Care Med. 2014;190[6]:708; Blackley DJ, et al. Am J Public Health. 2018;108[9]:1220).  
Of great concern is the resurgence of complicated Black Lung (progressive massive fibrosis [PMF]), which is completely disabling and leads to premature mortality. The prevalence of PMF is higher today than when NIOSH started formally tracking the disease in the 1970s, especially among specific populations. 
Since the mid-2000s, NIOSH and others have described the following(Hall NB, et al. Curr Environ Health Rep. 2019;6[3]:137): 
·    Increasing prevalence and severity of CWP both nationwide and specifically in Central Appalachia. 
·    Rapid progression of CWP. 
·    Increases in the frequency of lung transplantation for CWP.  
·    Severe disease among surface coal miners with no underground mining tenure. 
·    Increased severity of disease among former and retired miners. 
·    Hundreds of cases of PMF among coal miners seeking care at clinics in eastern Kentucky and southwestern Virginia. 
·    Increasing numbers of miners with PMF filing for federal black lung compensation. 
·    Radiologic and pathologic indications of increased respirable silica exposure among coal miners. 
·    Premature mortality in miners diagnosed with CWP. 
·    Underutilization of a secondary prevention worker removal program designed to reduce the exposure of miners with disease. 
·    Former miners with severe disease describing extreme pressure to operate. outside of applicable protective federal standards in order to increase productivity 
In our surveillance work, we have talked to many miners who, after having months or years' worth of extensive workups for pneumonia, sarcoidosis, lung cancer, and/or diseases other than the pneumoconioses, have eventually learned that they actually had dust-induced lung disease attributable to their work. Additionally, through our evaluation of the transplantation data, it has become clear that dust-related lung disease is likely underreported or underrecognized among those receiving lung transplants. Finally, through analysis of mortality data, it is apparent that CWP is also underreported as a cause of death among miners with black lung. We mention these points to emphasize how important it is to document a full occupational history for proper diagnoses, early intervention, and improved public health information to inform primary and secondary disease prevention efforts.  


Resources for clinicians  

CWP is most commonly identified using plain posterior-anterior chest radiography and presence/severity of fibrotic change is described using an international standard established by the International Labour Office (International Labour Office. Guidelines for the use of the ILO international classification of radiographs of pneumoconioses. Geneva: International Labour Office; 2011). In the United States, NIOSH operates the B Reader Training and Certification Program, which offers a free self-study syllabus, https://www.cdc.gov/niosh/topics/chestradiography/breader.html, and in-person training courses on occasion, to assist physicians in learning and demonstrating continuous competency in classifying chest radiographs of dust-exposed workers according to the ILO Standards (Halldin CN, et al. J Occup Environ Med. 2019;61[12]:1045). The B Reader Program and ILO Standards are currently undergoing a decade-long revision process where both will feature digitally acquired chest radiograph images. This process should be fully complete in the following months. 
To educate miners, mine operators, and others about the risks of respirable dust, NIOSH produced an educational video, Faces of Black Lung, in 2008 that featured two miners in their 50s and 60s who had complicated Black Lung. Because of the resurgence of disease and particularly severe cases being identified among much younger miners, NIOSH recently released an updated version of the video, Faces of Black Lung II, where three Kentucky underground miners, ages 39, 42, and 48, describe the incredible disability and quality of life lost due to a disease caused by gross overexposure of respirable coal mine dust.  
Unfortunately, the 42-year-old miner died from complications stemming from Black Lung less than a year after filming his part in the video, and the other two miners have been advised to be evaluated for lung transplantation. We hope that these men's stories will help younger miners relate to the risks of respirable coal mine dust and help others understand the severity of disease as all three of these men struggled to breathe just describing their day to day tasks.

 
Parting message 

No one should ever have to consider a lung transplant at the age of 40 because they went to work attempting to provide for their family. No one should ever be faced with end-of-life planning while their kids are in grade school because of a disease they acquired at work. Respirable coal mine dust is the only cause of black lung, and the coal mining industry has the necessary technology and tools to prevent harmful exposures to respirable dust, and, together with miners, must successfully and consistently implement dust suppression controls. There is no cure for black lung; it's irreversible and can be first recognized and continue to progress even after a miner has left exposure. However, early identification and appropriate intervention can prevent progression to the most disabling manifestations. The role of the clinician is to be part of the early identification of black lung through including CWP in the differential diagnosis for unusual or unexpected respiratory illness in otherwise healthy primarily working aged miners. The public health community must continue to monitor disease prevalence in working populations and implement policies and recommendations to support the efforts of those on the frontline - the miners, industry, and health-care workers.  
The Energy Information Agency projects that coal will continue to be a substantial source of U.S. energy production and consumption well into the mid- to late-century. Unfortunately, Black Lung has made a resurgence and is killing miners, and each of us has a role to play in eliminating it once and for all. We will continue to carry out our mandate to screen working coal miners for respiratory disease; however, given the continued contraction of the coal mining industry, it's much more likely for cases of disease to be recognized in the clinic setting. Therefore, we reiterate our previous plea to clinicians: when identifying an individual with interstitial fibrosis consider their full occupational history. 
 
Dr. Halldin and Dr. Laney are from the Surveillance Branch, Respiratory Health Division, National Institute for Occupational Safety and Health, Centers for Disease Control and Prevention, Morgantown, WV.

The findings and conclusions in this report are those of the author(s) and do not necessarily represent the official position of the National Institute for Occupational Safety and Health, Centers for Disease Control and Prevention.  
Advances in technology over the last century, as well as the exportation of many high exposure jobs, nearly eliminated lung diseases caused by occupational exposure to respirable dust (the pneumoconioses) in the United States. One such example of this near elimination is black lung, or coal workers' pneumoconiosis (CWP), following the 1969 Federal Coal Mine Health and Safety Act. The Act established permissible exposure limits to respirable dust, designed to prevent the most severe forms of CWP from occurring, and a national respiratory health screening program for underground coal miners. Between 1970 and the mid-1990s, disease prevalence plummeted from nearly 35% to less than 5% prevalence among longer tenured miners, and from 3% to less than 1% in miners with less than 10 years of mining tenure (Hall NB, et al. Curr Environ Health Rep. 2019;6[3]:137).

Dr. Cara N. Halldin
 
Many assumed that this was the last we'd hear of black lung - that the cases of disease existing in the 1990s were likely caused by exposures that occurred prior to the 1969 Act, and within a few years, no further cases would be detected. This appeared to be an entirely reasonable assumption in the 1990s given the 30 years of declining prevalence and the continuous technological advances designed to continue reductions in dust exposures. In fact, the precipitous decline in black lung was briefly viewed as a public health triumph, as the most severe forms appeared to be near eradication in the United States just 2 decades ago (Attfield MD, et al. Am J Public Health. 1992;82[7]:971; Attfield MD, et al. Am J Public Health. 1992;82[7]:964). However, what has since been observed is a strong and ongoing resurgence of the potentially deadly fibrotic interstitial disease starting in the early 2000s (Figure 1), with the most striking increase observed in the Central Appalachian states of Kentucky, Virginia, and West Virginia (Blackley DJ, et al. Am J Respir Crit Care Med. 2014;190[6]:708; Blackley DJ, et al. Am J Public Health. 2018;108[9]:1220).  
Of great concern is the resurgence of complicated Black Lung (progressive massive fibrosis [PMF]), which is completely disabling and leads to premature mortality. The prevalence of PMF is higher today than when NIOSH started formally tracking the disease in the 1970s, especially among specific populations. 
Since the mid-2000s, NIOSH and others have described the following(Hall NB, et al. Curr Environ Health Rep. 2019;6[3]:137): 
·    Increasing prevalence and severity of CWP both nationwide and specifically in Central Appalachia. 
·    Rapid progression of CWP. 
·    Increases in the frequency of lung transplantation for CWP.  
·    Severe disease among surface coal miners with no underground mining tenure. 
·    Increased severity of disease among former and retired miners. 
·    Hundreds of cases of PMF among coal miners seeking care at clinics in eastern Kentucky and southwestern Virginia. 
·    Increasing numbers of miners with PMF filing for federal black lung compensation. 
·    Radiologic and pathologic indications of increased respirable silica exposure among coal miners. 
·    Premature mortality in miners diagnosed with CWP. 
·    Underutilization of a secondary prevention worker removal program designed to reduce the exposure of miners with disease. 
·    Former miners with severe disease describing extreme pressure to operate. outside of applicable protective federal standards in order to increase productivity 
In our surveillance work, we have talked to many miners who, after having months or years' worth of extensive workups for pneumonia, sarcoidosis, lung cancer, and/or diseases other than the pneumoconioses, have eventually learned that they actually had dust-induced lung disease attributable to their work. Additionally, through our evaluation of the transplantation data, it has become clear that dust-related lung disease is likely underreported or underrecognized among those receiving lung transplants. Finally, through analysis of mortality data, it is apparent that CWP is also underreported as a cause of death among miners with black lung. We mention these points to emphasize how important it is to document a full occupational history for proper diagnoses, early intervention, and improved public health information to inform primary and secondary disease prevention efforts.  


Resources for clinicians  

CWP is most commonly identified using plain posterior-anterior chest radiography and presence/severity of fibrotic change is described using an international standard established by the International Labour Office (International Labour Office. Guidelines for the use of the ILO international classification of radiographs of pneumoconioses. Geneva: International Labour Office; 2011). In the United States, NIOSH operates the B Reader Training and Certification Program, which offers a free self-study syllabus, https://www.cdc.gov/niosh/topics/chestradiography/breader.html, and in-person training courses on occasion, to assist physicians in learning and demonstrating continuous competency in classifying chest radiographs of dust-exposed workers according to the ILO Standards (Halldin CN, et al. J Occup Environ Med. 2019;61[12]:1045). The B Reader Program and ILO Standards are currently undergoing a decade-long revision process where both will feature digitally acquired chest radiograph images. This process should be fully complete in the following months. 
To educate miners, mine operators, and others about the risks of respirable dust, NIOSH produced an educational video, Faces of Black Lung, in 2008 that featured two miners in their 50s and 60s who had complicated Black Lung. Because of the resurgence of disease and particularly severe cases being identified among much younger miners, NIOSH recently released an updated version of the video, Faces of Black Lung II, where three Kentucky underground miners, ages 39, 42, and 48, describe the incredible disability and quality of life lost due to a disease caused by gross overexposure of respirable coal mine dust.  
Unfortunately, the 42-year-old miner died from complications stemming from Black Lung less than a year after filming his part in the video, and the other two miners have been advised to be evaluated for lung transplantation. We hope that these men's stories will help younger miners relate to the risks of respirable coal mine dust and help others understand the severity of disease as all three of these men struggled to breathe just describing their day to day tasks.

 
Parting message 

No one should ever have to consider a lung transplant at the age of 40 because they went to work attempting to provide for their family. No one should ever be faced with end-of-life planning while their kids are in grade school because of a disease they acquired at work. Respirable coal mine dust is the only cause of black lung, and the coal mining industry has the necessary technology and tools to prevent harmful exposures to respirable dust, and, together with miners, must successfully and consistently implement dust suppression controls. There is no cure for black lung; it's irreversible and can be first recognized and continue to progress even after a miner has left exposure. However, early identification and appropriate intervention can prevent progression to the most disabling manifestations. The role of the clinician is to be part of the early identification of black lung through including CWP in the differential diagnosis for unusual or unexpected respiratory illness in otherwise healthy primarily working aged miners. The public health community must continue to monitor disease prevalence in working populations and implement policies and recommendations to support the efforts of those on the frontline - the miners, industry, and health-care workers.  
The Energy Information Agency projects that coal will continue to be a substantial source of U.S. energy production and consumption well into the mid- to late-century. Unfortunately, Black Lung has made a resurgence and is killing miners, and each of us has a role to play in eliminating it once and for all. We will continue to carry out our mandate to screen working coal miners for respiratory disease; however, given the continued contraction of the coal mining industry, it's much more likely for cases of disease to be recognized in the clinic setting. Therefore, we reiterate our previous plea to clinicians: when identifying an individual with interstitial fibrosis consider their full occupational history. 
 
Dr. Halldin and Dr. Laney are from the Surveillance Branch, Respiratory Health Division, National Institute for Occupational Safety and Health, Centers for Disease Control and Prevention, Morgantown, WV.

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CHEST Reviews

Critically ill patients with the HIV: 30 years later. By Dr. E. Azoulay, et al.


Phenotypic subtypes of obstructive sleep apnea: a challenge and opportunity for precision medicine. By Drs. A. Zinchuk and H. K. Yaggi.


Basic primer for finances in academic adult and pediatric pulmonary divisions. By Dr. L. Schnapp, et al.



Original research

Eligibility for lung volume reduction surgery in chronic obstructive pulmonary disease patients identified in a UK primary care setting. By Dr. H. Whittaker, et al.


Early life exposure to oral antibiotics and lung function into early adulthood. By Dr. K. dos Santos, et al.

Publications
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Editor’s picks

Editor’s picks

CHEST Reviews

Critically ill patients with the HIV: 30 years later. By Dr. E. Azoulay, et al.


Phenotypic subtypes of obstructive sleep apnea: a challenge and opportunity for precision medicine. By Drs. A. Zinchuk and H. K. Yaggi.


Basic primer for finances in academic adult and pediatric pulmonary divisions. By Dr. L. Schnapp, et al.



Original research

Eligibility for lung volume reduction surgery in chronic obstructive pulmonary disease patients identified in a UK primary care setting. By Dr. H. Whittaker, et al.


Early life exposure to oral antibiotics and lung function into early adulthood. By Dr. K. dos Santos, et al.

CHEST Reviews

Critically ill patients with the HIV: 30 years later. By Dr. E. Azoulay, et al.


Phenotypic subtypes of obstructive sleep apnea: a challenge and opportunity for precision medicine. By Drs. A. Zinchuk and H. K. Yaggi.


Basic primer for finances in academic adult and pediatric pulmonary divisions. By Dr. L. Schnapp, et al.



Original research

Eligibility for lung volume reduction surgery in chronic obstructive pulmonary disease patients identified in a UK primary care setting. By Dr. H. Whittaker, et al.


Early life exposure to oral antibiotics and lung function into early adulthood. By Dr. K. dos Santos, et al.

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