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.

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.

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

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

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

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.

jensmith@mdedge.com

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.

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.

jensmith@mdedge.com

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.

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.

jensmith@mdedge.com

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

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.

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.

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).  

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).  

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).  

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).  

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).  

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).  

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 

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

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

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).

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).

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).

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.

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.

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 2019 marked the inaugural FISH Bowl competition for attendees. Inspired by Shark Tank, our kinder, gentler, yet still competitive and cutting-edge FISH Bowl (Furthering Innovation and Science for Health) featured CHEST members disrupting our beliefs about how clinical care and education are performed. As health-care providers, they presented innovative ideas pertaining to education and clinical disease for pulmonary, critical care, and sleep medicine. Six finalists were chosen from dozens of submissions, and three emerged winners! In this new Meet the FISH Bowl Finalists series, CHEST introduces you to many of them – including Education Category Finalist Dr. Bhavani.

Name: Siva Bhavani

Institution: University of Chicago

Position: Pulmonary Critical Care Fellow



Title: Quizomics

Brief summary: Quizomics is a cutting-edge mobile app that hosts trivia competitions for medical conferences. Quizomics is unlike any medical trivia competition you have ever seen, because the Quizomics app can host 20,000 medical professionals simultaneously competing in the world’s largest medical trivia competition. Physicians compete among thousands of peers in their respective specialties to prepare for boards, obtain CME, and gain recognition in their fields as they fight their way to the top of the leaderboard!



1. What inspired your innovation? The average person checks their phone every 12 minutes, and this is no different at medical conferences. Whether you are in line for coffee, looking around at posters, or listening to a lecture - very little time passes before you are again checking your phone. The natural engagement we have with our phones can be leveraged for educational purposes by introducing gamified medical education platforms like Quizomics. I was inspired because the future of the medical conference demands digital engagement, gamified education, and large-scale social interaction. There is currently no platform that offers these services to prepare medical conferences for the digital education revolution that is coming.

2. Who do you think can benefit most from it, and why? The highest benefit is going to be to the physicians who are tired of the traditional CME options. Quizomics provides a high quality entertaining and educational platform for physicians to get CME while engaging and interacting with their peers. Further, physicians preparing for boards will find Quizomics an engaging alternative to the traditional textbooks. Finally, medical conferences will find that Quizomics can increase engagement, education, and attendance.

3. What do you see as challenges to your innovation gaining widespread acceptance? How can they be overcome? Content creation (trivia questions and explanations) is the biggest challenge to Quizomics. To overcome this, we plan to partner with tech-forward medical organizations that have high quality question banks in order to provide physicians with top-notch gamified education.

4. Why was it meaningful for you to emerge as a finalist in FISH Bowl 2019? FISH Bowl was an amazing opportunity to present Quizomics to others in the pulmonary/critical care specialty. Further, it was an opportunity to get direct feedback from leading educators in the field, and much of the resulting feedback has been incorporated into Quizomics.

5. What future do you envision for your innovation beyond FISH Bowl 2019? Quizomics is launching at a national neurosurgery board review course this winter. Following this pilot launch, Quizomics is scheduled for roll-out at Chicago area internal medicine residency programs through the summer of 2020. You can expect to see Quizomics at national conferences by 2021!










 

CHEST 2019 marked the inaugural FISH Bowl competition for attendees. Inspired by Shark Tank, our kinder, gentler, yet still competitive and cutting-edge FISH Bowl (Furthering Innovation and Science for Health) featured CHEST members disrupting our beliefs about how clinical care and education are performed. As health-care providers, they presented innovative ideas pertaining to education and clinical disease for pulmonary, critical care, and sleep medicine. Six finalists were chosen from dozens of submissions, and three emerged winners! In this new Meet the FISH Bowl Finalists series, CHEST introduces you to many of them – including Education Category Finalist Dr. Bhavani.

Name: Siva Bhavani

Institution: University of Chicago

Position: Pulmonary Critical Care Fellow



Title: Quizomics

Brief summary: Quizomics is a cutting-edge mobile app that hosts trivia competitions for medical conferences. Quizomics is unlike any medical trivia competition you have ever seen, because the Quizomics app can host 20,000 medical professionals simultaneously competing in the world’s largest medical trivia competition. Physicians compete among thousands of peers in their respective specialties to prepare for boards, obtain CME, and gain recognition in their fields as they fight their way to the top of the leaderboard!



1. What inspired your innovation? The average person checks their phone every 12 minutes, and this is no different at medical conferences. Whether you are in line for coffee, looking around at posters, or listening to a lecture - very little time passes before you are again checking your phone. The natural engagement we have with our phones can be leveraged for educational purposes by introducing gamified medical education platforms like Quizomics. I was inspired because the future of the medical conference demands digital engagement, gamified education, and large-scale social interaction. There is currently no platform that offers these services to prepare medical conferences for the digital education revolution that is coming.

2. Who do you think can benefit most from it, and why? The highest benefit is going to be to the physicians who are tired of the traditional CME options. Quizomics provides a high quality entertaining and educational platform for physicians to get CME while engaging and interacting with their peers. Further, physicians preparing for boards will find Quizomics an engaging alternative to the traditional textbooks. Finally, medical conferences will find that Quizomics can increase engagement, education, and attendance.

3. What do you see as challenges to your innovation gaining widespread acceptance? How can they be overcome? Content creation (trivia questions and explanations) is the biggest challenge to Quizomics. To overcome this, we plan to partner with tech-forward medical organizations that have high quality question banks in order to provide physicians with top-notch gamified education.

4. Why was it meaningful for you to emerge as a finalist in FISH Bowl 2019? FISH Bowl was an amazing opportunity to present Quizomics to others in the pulmonary/critical care specialty. Further, it was an opportunity to get direct feedback from leading educators in the field, and much of the resulting feedback has been incorporated into Quizomics.

5. What future do you envision for your innovation beyond FISH Bowl 2019? Quizomics is launching at a national neurosurgery board review course this winter. Following this pilot launch, Quizomics is scheduled for roll-out at Chicago area internal medicine residency programs through the summer of 2020. You can expect to see Quizomics at national conferences by 2021!










 

CHEST 2019 marked the inaugural FISH Bowl competition for attendees. Inspired by Shark Tank, our kinder, gentler, yet still competitive and cutting-edge FISH Bowl (Furthering Innovation and Science for Health) featured CHEST members disrupting our beliefs about how clinical care and education are performed. As health-care providers, they presented innovative ideas pertaining to education and clinical disease for pulmonary, critical care, and sleep medicine. Six finalists were chosen from dozens of submissions, and three emerged winners! In this new Meet the FISH Bowl Finalists series, CHEST introduces you to many of them – including Education Category Finalist Dr. Bhavani.

Name: Siva Bhavani

Institution: University of Chicago

Position: Pulmonary Critical Care Fellow



Title: Quizomics

Brief summary: Quizomics is a cutting-edge mobile app that hosts trivia competitions for medical conferences. Quizomics is unlike any medical trivia competition you have ever seen, because the Quizomics app can host 20,000 medical professionals simultaneously competing in the world’s largest medical trivia competition. Physicians compete among thousands of peers in their respective specialties to prepare for boards, obtain CME, and gain recognition in their fields as they fight their way to the top of the leaderboard!



1. What inspired your innovation? The average person checks their phone every 12 minutes, and this is no different at medical conferences. Whether you are in line for coffee, looking around at posters, or listening to a lecture - very little time passes before you are again checking your phone. The natural engagement we have with our phones can be leveraged for educational purposes by introducing gamified medical education platforms like Quizomics. I was inspired because the future of the medical conference demands digital engagement, gamified education, and large-scale social interaction. There is currently no platform that offers these services to prepare medical conferences for the digital education revolution that is coming.

2. Who do you think can benefit most from it, and why? The highest benefit is going to be to the physicians who are tired of the traditional CME options. Quizomics provides a high quality entertaining and educational platform for physicians to get CME while engaging and interacting with their peers. Further, physicians preparing for boards will find Quizomics an engaging alternative to the traditional textbooks. Finally, medical conferences will find that Quizomics can increase engagement, education, and attendance.

3. What do you see as challenges to your innovation gaining widespread acceptance? How can they be overcome? Content creation (trivia questions and explanations) is the biggest challenge to Quizomics. To overcome this, we plan to partner with tech-forward medical organizations that have high quality question banks in order to provide physicians with top-notch gamified education.

4. Why was it meaningful for you to emerge as a finalist in FISH Bowl 2019? FISH Bowl was an amazing opportunity to present Quizomics to others in the pulmonary/critical care specialty. Further, it was an opportunity to get direct feedback from leading educators in the field, and much of the resulting feedback has been incorporated into Quizomics.

5. What future do you envision for your innovation beyond FISH Bowl 2019? Quizomics is launching at a national neurosurgery board review course this winter. Following this pilot launch, Quizomics is scheduled for roll-out at Chicago area internal medicine residency programs through the summer of 2020. You can expect to see Quizomics at national conferences by 2021!










 

Keeping the momentum from our first-ever CHEST Foundation Reception and Casino Night at CHEST 2019, where champions in attendance raised more than $35,000 for pulmonary fibrosis research, the CHEST Foundation continues our long-standing partnership with the Feldman Family Foundation and invites you to the 7th Annual Irv Feldman Texas Hold ‘Em Annual Tournament & Casino Night!

Funds raised at the event support the CHEST Foundation’s mission-based programming and directly impact patients living with pulmonary fibrosis by providing them with access to chest medicine experts; assistance in securing medication and portable oxygen; and empowering the patients and their clinicians to better manage their disease.

Keeping the momentum from our first-ever CHEST Foundation Reception and Casino Night at CHEST 2019, where champions in attendance raised more than $35,000 for pulmonary fibrosis research, the CHEST Foundation continues our long-standing partnership with the Feldman Family Foundation and invites you to the 7th Annual Irv Feldman Texas Hold ‘Em Annual Tournament & Casino Night!

Funds raised at the event support the CHEST Foundation’s mission-based programming and directly impact patients living with pulmonary fibrosis by providing them with access to chest medicine experts; assistance in securing medication and portable oxygen; and empowering the patients and their clinicians to better manage their disease.

Keeping the momentum from our first-ever CHEST Foundation Reception and Casino Night at CHEST 2019, where champions in attendance raised more than $35,000 for pulmonary fibrosis research, the CHEST Foundation continues our long-standing partnership with the Feldman Family Foundation and invites you to the 7th Annual Irv Feldman Texas Hold ‘Em Annual Tournament & Casino Night!

Funds raised at the event support the CHEST Foundation’s mission-based programming and directly impact patients living with pulmonary fibrosis by providing them with access to chest medicine experts; assistance in securing medication and portable oxygen; and empowering the patients and their clinicians to better manage their disease.