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Managing overuse of food IgE panels: Multiple approaches needed
PHOENIX – For at least a decade, professional allergy and pediatrics societies have urged against using food IgE tests unless the patient has a history consistent with potential IgE-mediated food allergies. Yet virtually every health system offers these blood tests, and their inappropriate use – especially of panels that measure many allergens at once – remains a huge problem.
Beyond wasteful spending, excessive food IgE testing can lead patients to worry needlessly and to avoid foods they aren’t allergic to. For babies and toddlers, avoidance can drive up the risk of developing allergies to those foods later in life – a consequence that was convincingly proven by the LEAP study but has still not translated to a widespread change in practice.
“I think we all know that there’s just a lot of system-wide resistance to making these changes, and we don’t completely understand why,” Nicholas Hartog, MD, an allergist with Spectrum Health in Grand Rapids, Mich., told this news organization.
At the American Academy of Allergy, Asthma & Immunology annual meeting, one of Dr. Hartog’s residents, Courtney Cotter, DO, presented a poster detailing their team’s retrospective review of food panel ordering practices across Spectrum Health, a large, multispecialty physician group in west Michigan.
The team combed Epic health records to evaluate food IgE ordering from January 2016 to December 2021. They tracked monthly figures for the number of patients who underwent food IgE tests, the percentage of tested patients for whom food panels were available, and the number of food panels and total number of food IgE tests ordered. They compared average rates from the final 3 months with rates from the first 3 months, which predated the August 2016 establishment of an academic pediatric allergy/immunology department.
Initially, Dr. Hartog and his colleagues focused on educating doctors on appropriate use of food IgE tests through informal conversations and lectures, but, he said, “It’s really difficult to change physician behavior, so sometimes we have to go about it by making it hard to do the wrong thing.”
To that end, the team tried to eliminate the food panels. However, some lab staff feared the possibility of losing revenue if physicians decided to order these tests elsewhere. After more negotiations, the laboratory agreed in December 2019 to restrict and rework food IgE testing by dropping the number of panels from nine to two and by restricting the number of foods in those panels. For example, in the basic panel, “we limited it to just four allergens, so even if you order a panel, you’re not getting 20 results,” Dr. Hartog told this news organization. “I finally found a friendly pathologist who was very on board with this positive change.”
In December 2020, the team implemented yet another strategy: Epic alerts. Each time doctors request a food panel, they receive a pop-up message stating that panel tests are not recommended and asking if they wish to proceed.
The multipronged effort had a modest impact on the number of food panels ordered per month, which dipped from 112.7 to 84.7 for the first and last 3 months of the study. Monthly totals of individual food IgE tests showed a steeper drop, decreasing from 2,379 to 1,180 in the initial and final 3-month periods – a change Dr. Hartog attributes to the revamped food panels. They estimated the cost savings at around $40 per patient, “and we were getting on average about 200 patients a month, so it adds up,” he said.
But the Epic alerts seemed to have little effect. Over the duration of the study, the monthly number of IgE tests ordered per clinician did not change. Neither did the percentage of patients evaluated with a food panel. “The alerts pop up, but people are still ordering,” Dr. Hartog said.
On the whole, the analysis shows that, “despite major efforts to educate providers and the public about these things, it is rampantly disregarded and is a huge problem for our specialty and is likely causing harm to patients,” said allergist-immunologist Gerald Lee, MD, of Emory University in Atlanta.
Dr. Lee said that a common scenario for inappropriate food IgE testing is severe eczema. Many parents request blood tests because they assume their child’s skin condition is driven by food allergies. When the child turns up positive to various foods on panel tests, which have high false-positive rates, the physician may recommend eliminating those foods to improve the skin rash – which “actually delays introduction of the food and potentially increases the risk for food allergy,” Dr. Lee said. “That was a common practice when I was in fellowship (2011) and is widely prevalent today.”
Edwin Kim, MD, director of the UNC Food Allergy Initiative at the University of North Carolina at Chapel Hill, agrees that food IgE panels are wasteful and harmful. However, he thinks the solution is not to tell primary care physicians and pediatricians to stop using the tests. “We’re insinuating that they’re being used inappropriately, but the problem is that these are people that are patient facing, the patients are asking a question, and the appropriate tests aren’t there,” Dr. Kim said. “A big part of that problem is that the tests we have available to us are not good enough.”
The Spectrum Health analysis did not examine ICD codes associated with the food IgE tests or track which physicians ordered the tests. A 2016 retrospective review published in Pediatrics did evaluate ordering practices by specialty and found that primary care providers ordered “significantly more food allergen panels, tests for uncommon causes of food allergy, and generate higher cost per patient compared with allergists.”
Given the immense challenges with implementing system-wide changes, sometimes it can help to educate parents and families. “When you sit down and take 2 or 3 minutes to explain why this is a bad test and that I care about your kid but just don’t want inappropriate testing, they’re okay with it. They understand,” Dr. Hartog said. “When I teach residents, I make sure to emphasize that we have these conversations all the time.”
Dr. Hartog reports financial relationships with Binding Site (speaker), Regeneron (advisory board), Genentech (advisory board), Horizon Pharmaceuticals (advisory board, consulting, speaker), Takeda (speaker, advisory board) and Pharming Healthcare (advisory board, scientific steering committee, consulting), though none related to food allergy. Dr. Lee has disclosed no relevant financial relationships. Dr. Kim reports consultancy with Aimmune Therapeutics, Allako, AllerGenis, Belhaven Pharma, DBV Technologies, Duke Clinical Research Institute, and Nutricia; advisory board membership with ALK, DBV Technologies, Kenota Health, and Ukko; and grant support from the National Institute of Allergy and Infectious Diseases and the Immune Tolerance Network; the National Center for Complementary and Integrative Health; Food Allergy Research and Education; and the Wallace Research Foundation.
A version of this article first appeared on Medscape.com.
PHOENIX – For at least a decade, professional allergy and pediatrics societies have urged against using food IgE tests unless the patient has a history consistent with potential IgE-mediated food allergies. Yet virtually every health system offers these blood tests, and their inappropriate use – especially of panels that measure many allergens at once – remains a huge problem.
Beyond wasteful spending, excessive food IgE testing can lead patients to worry needlessly and to avoid foods they aren’t allergic to. For babies and toddlers, avoidance can drive up the risk of developing allergies to those foods later in life – a consequence that was convincingly proven by the LEAP study but has still not translated to a widespread change in practice.
“I think we all know that there’s just a lot of system-wide resistance to making these changes, and we don’t completely understand why,” Nicholas Hartog, MD, an allergist with Spectrum Health in Grand Rapids, Mich., told this news organization.
At the American Academy of Allergy, Asthma & Immunology annual meeting, one of Dr. Hartog’s residents, Courtney Cotter, DO, presented a poster detailing their team’s retrospective review of food panel ordering practices across Spectrum Health, a large, multispecialty physician group in west Michigan.
The team combed Epic health records to evaluate food IgE ordering from January 2016 to December 2021. They tracked monthly figures for the number of patients who underwent food IgE tests, the percentage of tested patients for whom food panels were available, and the number of food panels and total number of food IgE tests ordered. They compared average rates from the final 3 months with rates from the first 3 months, which predated the August 2016 establishment of an academic pediatric allergy/immunology department.
Initially, Dr. Hartog and his colleagues focused on educating doctors on appropriate use of food IgE tests through informal conversations and lectures, but, he said, “It’s really difficult to change physician behavior, so sometimes we have to go about it by making it hard to do the wrong thing.”
To that end, the team tried to eliminate the food panels. However, some lab staff feared the possibility of losing revenue if physicians decided to order these tests elsewhere. After more negotiations, the laboratory agreed in December 2019 to restrict and rework food IgE testing by dropping the number of panels from nine to two and by restricting the number of foods in those panels. For example, in the basic panel, “we limited it to just four allergens, so even if you order a panel, you’re not getting 20 results,” Dr. Hartog told this news organization. “I finally found a friendly pathologist who was very on board with this positive change.”
In December 2020, the team implemented yet another strategy: Epic alerts. Each time doctors request a food panel, they receive a pop-up message stating that panel tests are not recommended and asking if they wish to proceed.
The multipronged effort had a modest impact on the number of food panels ordered per month, which dipped from 112.7 to 84.7 for the first and last 3 months of the study. Monthly totals of individual food IgE tests showed a steeper drop, decreasing from 2,379 to 1,180 in the initial and final 3-month periods – a change Dr. Hartog attributes to the revamped food panels. They estimated the cost savings at around $40 per patient, “and we were getting on average about 200 patients a month, so it adds up,” he said.
But the Epic alerts seemed to have little effect. Over the duration of the study, the monthly number of IgE tests ordered per clinician did not change. Neither did the percentage of patients evaluated with a food panel. “The alerts pop up, but people are still ordering,” Dr. Hartog said.
On the whole, the analysis shows that, “despite major efforts to educate providers and the public about these things, it is rampantly disregarded and is a huge problem for our specialty and is likely causing harm to patients,” said allergist-immunologist Gerald Lee, MD, of Emory University in Atlanta.
Dr. Lee said that a common scenario for inappropriate food IgE testing is severe eczema. Many parents request blood tests because they assume their child’s skin condition is driven by food allergies. When the child turns up positive to various foods on panel tests, which have high false-positive rates, the physician may recommend eliminating those foods to improve the skin rash – which “actually delays introduction of the food and potentially increases the risk for food allergy,” Dr. Lee said. “That was a common practice when I was in fellowship (2011) and is widely prevalent today.”
Edwin Kim, MD, director of the UNC Food Allergy Initiative at the University of North Carolina at Chapel Hill, agrees that food IgE panels are wasteful and harmful. However, he thinks the solution is not to tell primary care physicians and pediatricians to stop using the tests. “We’re insinuating that they’re being used inappropriately, but the problem is that these are people that are patient facing, the patients are asking a question, and the appropriate tests aren’t there,” Dr. Kim said. “A big part of that problem is that the tests we have available to us are not good enough.”
The Spectrum Health analysis did not examine ICD codes associated with the food IgE tests or track which physicians ordered the tests. A 2016 retrospective review published in Pediatrics did evaluate ordering practices by specialty and found that primary care providers ordered “significantly more food allergen panels, tests for uncommon causes of food allergy, and generate higher cost per patient compared with allergists.”
Given the immense challenges with implementing system-wide changes, sometimes it can help to educate parents and families. “When you sit down and take 2 or 3 minutes to explain why this is a bad test and that I care about your kid but just don’t want inappropriate testing, they’re okay with it. They understand,” Dr. Hartog said. “When I teach residents, I make sure to emphasize that we have these conversations all the time.”
Dr. Hartog reports financial relationships with Binding Site (speaker), Regeneron (advisory board), Genentech (advisory board), Horizon Pharmaceuticals (advisory board, consulting, speaker), Takeda (speaker, advisory board) and Pharming Healthcare (advisory board, scientific steering committee, consulting), though none related to food allergy. Dr. Lee has disclosed no relevant financial relationships. Dr. Kim reports consultancy with Aimmune Therapeutics, Allako, AllerGenis, Belhaven Pharma, DBV Technologies, Duke Clinical Research Institute, and Nutricia; advisory board membership with ALK, DBV Technologies, Kenota Health, and Ukko; and grant support from the National Institute of Allergy and Infectious Diseases and the Immune Tolerance Network; the National Center for Complementary and Integrative Health; Food Allergy Research and Education; and the Wallace Research Foundation.
A version of this article first appeared on Medscape.com.
PHOENIX – For at least a decade, professional allergy and pediatrics societies have urged against using food IgE tests unless the patient has a history consistent with potential IgE-mediated food allergies. Yet virtually every health system offers these blood tests, and their inappropriate use – especially of panels that measure many allergens at once – remains a huge problem.
Beyond wasteful spending, excessive food IgE testing can lead patients to worry needlessly and to avoid foods they aren’t allergic to. For babies and toddlers, avoidance can drive up the risk of developing allergies to those foods later in life – a consequence that was convincingly proven by the LEAP study but has still not translated to a widespread change in practice.
“I think we all know that there’s just a lot of system-wide resistance to making these changes, and we don’t completely understand why,” Nicholas Hartog, MD, an allergist with Spectrum Health in Grand Rapids, Mich., told this news organization.
At the American Academy of Allergy, Asthma & Immunology annual meeting, one of Dr. Hartog’s residents, Courtney Cotter, DO, presented a poster detailing their team’s retrospective review of food panel ordering practices across Spectrum Health, a large, multispecialty physician group in west Michigan.
The team combed Epic health records to evaluate food IgE ordering from January 2016 to December 2021. They tracked monthly figures for the number of patients who underwent food IgE tests, the percentage of tested patients for whom food panels were available, and the number of food panels and total number of food IgE tests ordered. They compared average rates from the final 3 months with rates from the first 3 months, which predated the August 2016 establishment of an academic pediatric allergy/immunology department.
Initially, Dr. Hartog and his colleagues focused on educating doctors on appropriate use of food IgE tests through informal conversations and lectures, but, he said, “It’s really difficult to change physician behavior, so sometimes we have to go about it by making it hard to do the wrong thing.”
To that end, the team tried to eliminate the food panels. However, some lab staff feared the possibility of losing revenue if physicians decided to order these tests elsewhere. After more negotiations, the laboratory agreed in December 2019 to restrict and rework food IgE testing by dropping the number of panels from nine to two and by restricting the number of foods in those panels. For example, in the basic panel, “we limited it to just four allergens, so even if you order a panel, you’re not getting 20 results,” Dr. Hartog told this news organization. “I finally found a friendly pathologist who was very on board with this positive change.”
In December 2020, the team implemented yet another strategy: Epic alerts. Each time doctors request a food panel, they receive a pop-up message stating that panel tests are not recommended and asking if they wish to proceed.
The multipronged effort had a modest impact on the number of food panels ordered per month, which dipped from 112.7 to 84.7 for the first and last 3 months of the study. Monthly totals of individual food IgE tests showed a steeper drop, decreasing from 2,379 to 1,180 in the initial and final 3-month periods – a change Dr. Hartog attributes to the revamped food panels. They estimated the cost savings at around $40 per patient, “and we were getting on average about 200 patients a month, so it adds up,” he said.
But the Epic alerts seemed to have little effect. Over the duration of the study, the monthly number of IgE tests ordered per clinician did not change. Neither did the percentage of patients evaluated with a food panel. “The alerts pop up, but people are still ordering,” Dr. Hartog said.
On the whole, the analysis shows that, “despite major efforts to educate providers and the public about these things, it is rampantly disregarded and is a huge problem for our specialty and is likely causing harm to patients,” said allergist-immunologist Gerald Lee, MD, of Emory University in Atlanta.
Dr. Lee said that a common scenario for inappropriate food IgE testing is severe eczema. Many parents request blood tests because they assume their child’s skin condition is driven by food allergies. When the child turns up positive to various foods on panel tests, which have high false-positive rates, the physician may recommend eliminating those foods to improve the skin rash – which “actually delays introduction of the food and potentially increases the risk for food allergy,” Dr. Lee said. “That was a common practice when I was in fellowship (2011) and is widely prevalent today.”
Edwin Kim, MD, director of the UNC Food Allergy Initiative at the University of North Carolina at Chapel Hill, agrees that food IgE panels are wasteful and harmful. However, he thinks the solution is not to tell primary care physicians and pediatricians to stop using the tests. “We’re insinuating that they’re being used inappropriately, but the problem is that these are people that are patient facing, the patients are asking a question, and the appropriate tests aren’t there,” Dr. Kim said. “A big part of that problem is that the tests we have available to us are not good enough.”
The Spectrum Health analysis did not examine ICD codes associated with the food IgE tests or track which physicians ordered the tests. A 2016 retrospective review published in Pediatrics did evaluate ordering practices by specialty and found that primary care providers ordered “significantly more food allergen panels, tests for uncommon causes of food allergy, and generate higher cost per patient compared with allergists.”
Given the immense challenges with implementing system-wide changes, sometimes it can help to educate parents and families. “When you sit down and take 2 or 3 minutes to explain why this is a bad test and that I care about your kid but just don’t want inappropriate testing, they’re okay with it. They understand,” Dr. Hartog said. “When I teach residents, I make sure to emphasize that we have these conversations all the time.”
Dr. Hartog reports financial relationships with Binding Site (speaker), Regeneron (advisory board), Genentech (advisory board), Horizon Pharmaceuticals (advisory board, consulting, speaker), Takeda (speaker, advisory board) and Pharming Healthcare (advisory board, scientific steering committee, consulting), though none related to food allergy. Dr. Lee has disclosed no relevant financial relationships. Dr. Kim reports consultancy with Aimmune Therapeutics, Allako, AllerGenis, Belhaven Pharma, DBV Technologies, Duke Clinical Research Institute, and Nutricia; advisory board membership with ALK, DBV Technologies, Kenota Health, and Ukko; and grant support from the National Institute of Allergy and Infectious Diseases and the Immune Tolerance Network; the National Center for Complementary and Integrative Health; Food Allergy Research and Education; and the Wallace Research Foundation.
A version of this article first appeared on Medscape.com.
Boosting daily exercise after age 70 tied to lower CVD risk
Increasingly active patterns of physical activity were linked with reduced rates of overall mortality and cardiovascular disease (CVD), but early rather than later in late life, in a 20-year follow-up cohort study.
In this population of people older than 65 years, researchers found that physical activity overall was associated with lower rates of incident CVD, particularly among men, and the association was strongest in people 70 to 75 years of age, rather than in older age groups.
They also looked at “trajectories,” or changes in activity over time, and found that a stable-high trajectory of activity was associated with a significantly lower risk for cardiovascular outcomes in men than in those with a stable-low trajectory. For women, more physical activity was consistently associated with lower CVD outcomes, although not statistically significantly so, except for overall mortality, which did reach significance.
Notably, the greatest reduction in cardiovascular risk was reported in people who did more than 20 minutes of physical exercise each day, and it was more pronounced in those 70 years of age.
Physical activity was also associated with a lower incidence of heart failure and coronary heart disease in older people, again especially early on in late life, reported Claudio Barbiellini Amidei, MD, University of Padua, Italy, and colleagues.
The data suggest that physical activity is more effective in preventing CVD onset when implemented early rather than later in life, noted Dr. Amidei in an email.
“The findings of our study are suggestive of a protective effect of physical activity in late-life on cardiovascular health. WHO recommendations for adults and older adults are to practice at least 20 minutes of moderate to vigorous physical activity per day. I believe this is a realistic target, and policy makers should raise awareness on the importance of achieving this goal at all ages, including in late-life,” Dr. Amidei said.
The study was published online Feb. 14 in Heart.
Previous research has demonstrated that the most benefit of high physical activity, compared with low, begins at about 60 years of age, and that is because younger people are at much lower risk, noted Carl “Chip” Lavie MD, FACC, medical director of cardiac rehabilitation and prevention, Ochsner Clinical School–The University of Queensland School of Medicine, New Orleans, who was not involved in the study.
“At quite old ages, for example over age 80, resistance exercise or weight training and balance training may be even more important than aerobic training,” he added.
Activity ‘trajectories’
The benefits of physical activity on cardiovascular risk are well established, the researchers note. Less clear is the role that trajectories of activity over time play, although research to date suggests a reduction in risk with increasing activity from mid-life to early old age, they write.
For the current analysis, the researchers assessed 3,099 Italian participants. Mean age was about 75 years, and baseline data were collected from 1995 to 1997.
Follow-up visits were conducted after 4 years and again after 7 years. Using hospital medical records and mortality data, the researchers were able to collect surveillance data through 2018. Hospital records, surveys, and clinical assessments helped them identify incident and prevalent cardiovascular diseases, such as stroke, coronary heart disease, and heart failure.
Participants’ physical activity patterns were classified as stable-high, low-increasing, high-decreasing, and stable-low. Exposure was evaluated at 70, 75, 80, and 85 years of age.
“In our analyses, we focused on moderate to vigorous physical activity, and these include a broad range of exercises, such as walking very briskly, playing tennis, [and] jogging, but comprise also other activities, such as gardening or doing household chores,” said Dr. Amidei.
Patterns of stable-low physical activity were linked to a significantly greater risk for cardiovascular outcomes in men than patterns of stable-high physical activity (hazard ratio, 0.48; 95% confidence interval, 0.27-0.86; P for trend = .002).
No significant relation was found between physical activity and stroke, the researchers note.
“The benefits of physical activity seem to lessen above the age of 75 years and seem more important in men,” noted Dr. Lavie. “This may be partly due to the higher risk of CVD in men. Women typically lag 13 to 15 years behind men for CVD but start catching up in older years.”
Limitations of the study include lack of information regarding physical activity during mid-life, the limited number of stroke events, the relatively few participants older than 85 years, and potential recall bias, the researchers note.
Another limitation was that the physical activity data were based on patient surveys collected 3 years apart and did not involve the use of an accelerometer, the researchers add.
“Future observational studies are required to confirm our findings and pathophysiological studies are warranted to examine the underlying biological mechanisms. Physical activity is likely to be beneficial at any age, but to summarize our findings, we could say that when it comes to being physically active, the sooner the better,” concluded Dr. Amidei.
Dr. Amidei reports no relevant financial relationships.
A version of this article first appeared on Medscape.com.
Increasingly active patterns of physical activity were linked with reduced rates of overall mortality and cardiovascular disease (CVD), but early rather than later in late life, in a 20-year follow-up cohort study.
In this population of people older than 65 years, researchers found that physical activity overall was associated with lower rates of incident CVD, particularly among men, and the association was strongest in people 70 to 75 years of age, rather than in older age groups.
They also looked at “trajectories,” or changes in activity over time, and found that a stable-high trajectory of activity was associated with a significantly lower risk for cardiovascular outcomes in men than in those with a stable-low trajectory. For women, more physical activity was consistently associated with lower CVD outcomes, although not statistically significantly so, except for overall mortality, which did reach significance.
Notably, the greatest reduction in cardiovascular risk was reported in people who did more than 20 minutes of physical exercise each day, and it was more pronounced in those 70 years of age.
Physical activity was also associated with a lower incidence of heart failure and coronary heart disease in older people, again especially early on in late life, reported Claudio Barbiellini Amidei, MD, University of Padua, Italy, and colleagues.
The data suggest that physical activity is more effective in preventing CVD onset when implemented early rather than later in life, noted Dr. Amidei in an email.
“The findings of our study are suggestive of a protective effect of physical activity in late-life on cardiovascular health. WHO recommendations for adults and older adults are to practice at least 20 minutes of moderate to vigorous physical activity per day. I believe this is a realistic target, and policy makers should raise awareness on the importance of achieving this goal at all ages, including in late-life,” Dr. Amidei said.
The study was published online Feb. 14 in Heart.
Previous research has demonstrated that the most benefit of high physical activity, compared with low, begins at about 60 years of age, and that is because younger people are at much lower risk, noted Carl “Chip” Lavie MD, FACC, medical director of cardiac rehabilitation and prevention, Ochsner Clinical School–The University of Queensland School of Medicine, New Orleans, who was not involved in the study.
“At quite old ages, for example over age 80, resistance exercise or weight training and balance training may be even more important than aerobic training,” he added.
Activity ‘trajectories’
The benefits of physical activity on cardiovascular risk are well established, the researchers note. Less clear is the role that trajectories of activity over time play, although research to date suggests a reduction in risk with increasing activity from mid-life to early old age, they write.
For the current analysis, the researchers assessed 3,099 Italian participants. Mean age was about 75 years, and baseline data were collected from 1995 to 1997.
Follow-up visits were conducted after 4 years and again after 7 years. Using hospital medical records and mortality data, the researchers were able to collect surveillance data through 2018. Hospital records, surveys, and clinical assessments helped them identify incident and prevalent cardiovascular diseases, such as stroke, coronary heart disease, and heart failure.
Participants’ physical activity patterns were classified as stable-high, low-increasing, high-decreasing, and stable-low. Exposure was evaluated at 70, 75, 80, and 85 years of age.
“In our analyses, we focused on moderate to vigorous physical activity, and these include a broad range of exercises, such as walking very briskly, playing tennis, [and] jogging, but comprise also other activities, such as gardening or doing household chores,” said Dr. Amidei.
Patterns of stable-low physical activity were linked to a significantly greater risk for cardiovascular outcomes in men than patterns of stable-high physical activity (hazard ratio, 0.48; 95% confidence interval, 0.27-0.86; P for trend = .002).
No significant relation was found between physical activity and stroke, the researchers note.
“The benefits of physical activity seem to lessen above the age of 75 years and seem more important in men,” noted Dr. Lavie. “This may be partly due to the higher risk of CVD in men. Women typically lag 13 to 15 years behind men for CVD but start catching up in older years.”
Limitations of the study include lack of information regarding physical activity during mid-life, the limited number of stroke events, the relatively few participants older than 85 years, and potential recall bias, the researchers note.
Another limitation was that the physical activity data were based on patient surveys collected 3 years apart and did not involve the use of an accelerometer, the researchers add.
“Future observational studies are required to confirm our findings and pathophysiological studies are warranted to examine the underlying biological mechanisms. Physical activity is likely to be beneficial at any age, but to summarize our findings, we could say that when it comes to being physically active, the sooner the better,” concluded Dr. Amidei.
Dr. Amidei reports no relevant financial relationships.
A version of this article first appeared on Medscape.com.
Increasingly active patterns of physical activity were linked with reduced rates of overall mortality and cardiovascular disease (CVD), but early rather than later in late life, in a 20-year follow-up cohort study.
In this population of people older than 65 years, researchers found that physical activity overall was associated with lower rates of incident CVD, particularly among men, and the association was strongest in people 70 to 75 years of age, rather than in older age groups.
They also looked at “trajectories,” or changes in activity over time, and found that a stable-high trajectory of activity was associated with a significantly lower risk for cardiovascular outcomes in men than in those with a stable-low trajectory. For women, more physical activity was consistently associated with lower CVD outcomes, although not statistically significantly so, except for overall mortality, which did reach significance.
Notably, the greatest reduction in cardiovascular risk was reported in people who did more than 20 minutes of physical exercise each day, and it was more pronounced in those 70 years of age.
Physical activity was also associated with a lower incidence of heart failure and coronary heart disease in older people, again especially early on in late life, reported Claudio Barbiellini Amidei, MD, University of Padua, Italy, and colleagues.
The data suggest that physical activity is more effective in preventing CVD onset when implemented early rather than later in life, noted Dr. Amidei in an email.
“The findings of our study are suggestive of a protective effect of physical activity in late-life on cardiovascular health. WHO recommendations for adults and older adults are to practice at least 20 minutes of moderate to vigorous physical activity per day. I believe this is a realistic target, and policy makers should raise awareness on the importance of achieving this goal at all ages, including in late-life,” Dr. Amidei said.
The study was published online Feb. 14 in Heart.
Previous research has demonstrated that the most benefit of high physical activity, compared with low, begins at about 60 years of age, and that is because younger people are at much lower risk, noted Carl “Chip” Lavie MD, FACC, medical director of cardiac rehabilitation and prevention, Ochsner Clinical School–The University of Queensland School of Medicine, New Orleans, who was not involved in the study.
“At quite old ages, for example over age 80, resistance exercise or weight training and balance training may be even more important than aerobic training,” he added.
Activity ‘trajectories’
The benefits of physical activity on cardiovascular risk are well established, the researchers note. Less clear is the role that trajectories of activity over time play, although research to date suggests a reduction in risk with increasing activity from mid-life to early old age, they write.
For the current analysis, the researchers assessed 3,099 Italian participants. Mean age was about 75 years, and baseline data were collected from 1995 to 1997.
Follow-up visits were conducted after 4 years and again after 7 years. Using hospital medical records and mortality data, the researchers were able to collect surveillance data through 2018. Hospital records, surveys, and clinical assessments helped them identify incident and prevalent cardiovascular diseases, such as stroke, coronary heart disease, and heart failure.
Participants’ physical activity patterns were classified as stable-high, low-increasing, high-decreasing, and stable-low. Exposure was evaluated at 70, 75, 80, and 85 years of age.
“In our analyses, we focused on moderate to vigorous physical activity, and these include a broad range of exercises, such as walking very briskly, playing tennis, [and] jogging, but comprise also other activities, such as gardening or doing household chores,” said Dr. Amidei.
Patterns of stable-low physical activity were linked to a significantly greater risk for cardiovascular outcomes in men than patterns of stable-high physical activity (hazard ratio, 0.48; 95% confidence interval, 0.27-0.86; P for trend = .002).
No significant relation was found between physical activity and stroke, the researchers note.
“The benefits of physical activity seem to lessen above the age of 75 years and seem more important in men,” noted Dr. Lavie. “This may be partly due to the higher risk of CVD in men. Women typically lag 13 to 15 years behind men for CVD but start catching up in older years.”
Limitations of the study include lack of information regarding physical activity during mid-life, the limited number of stroke events, the relatively few participants older than 85 years, and potential recall bias, the researchers note.
Another limitation was that the physical activity data were based on patient surveys collected 3 years apart and did not involve the use of an accelerometer, the researchers add.
“Future observational studies are required to confirm our findings and pathophysiological studies are warranted to examine the underlying biological mechanisms. Physical activity is likely to be beneficial at any age, but to summarize our findings, we could say that when it comes to being physically active, the sooner the better,” concluded Dr. Amidei.
Dr. Amidei reports no relevant financial relationships.
A version of this article first appeared on Medscape.com.
Upadacitinib reduces extraintestinal manifestations of ulcerative colitis: Study
The selective Janus kinase (JAK) inhibitor upadacitinib resolved more extraintestinal manifestations (EIMs) of ulcerative colitis than placebo, according to an analysis of phase 3 study findings.
The 45-mg induction dose of upadacitinib, for example, resolved more anemia, peripheral arthropathy, and axial arthropathy than placebo. The 15-mg and 30-mg maintenance doses were also associated with greater resolution of EIMs, with the higher dose producing a significantly greater reduction in comparison with placebo.
“Upadacitinib was highly effective in decreasing ulcerative colitis activity, which is triggering the extraintestinal manifestations,” lead author Jean-Frederick Colombel, MD, told this news organization.
Dr. Colombel, a gastroenterologist and professor of medicine at Mount Sinai Icahn School of Medicine, New York, said he was not surprised to see this, given that the oral JAK inhibitor “has also demonstrated efficacy in rheumatoid arthritis, psoriatic arthritis, atopic dermatitis, and ankylosing spondylitis.”
He presented the study findings during an oral presentation Feb. 19 at the 17th congress of the European Crohn’s and Colitis Organisation.
In the United States, AbbVie is seeking approval from the U.S. Food and Drug Administration for upadacitinib (RINVOQ) to treat active, moderate to severe ulcerative colitis. The company submitted regulatory applications in September 2021 for this indication.
About 1 in 4 report EIMs
The researchers evaluated the U-ACHIEVE and U-ACCOMPLISH 8-week induction studies, in which 660 participants were randomly assigned to receive upadacitinib 45 mg and 328 patients were assigned to receive placebo. At baseline, 25% of treated patients and 27% of the placebo group had experienced at least one EIM.
The researchers also assessed outcomes of the 52-week U-ACHIEVE maintenance trial, in which 154 people with ulcerative colitis were randomly assigned to receive 30-mg upadacitinib, 148 to receive 15-mg upadacitinib, and 149 to receive placebo. Between 24% and 27% of participants in these groups reported at least one EIM at baseline.
Key findings
In the pooled induction studies, a higher proportion of participants in the upadacitinib group achieved resolution of any EIM at 8 weeks, compared with the placebo group (40% vs. 33%).
Regarding specific EIMs, a higher proportion of those in the upadacitinib group had achieved resolution of peripheral or axial arthropathies at 8 weeks, compared with the placebo group (55% vs. 42%), and more participants experienced resolution of anemia (38% vs. 33%).
Similar effects were observed in the maintenance study. Resolution of any EIM at 52 weeks was experienced by 66% of those in the 30-mg upadacitinib group, compared with 42% in the 15-mg upadacitinib group and 24% in the placebo group. The 30-mg results were significantly different than placebo (P < .001).
Regarding specific EIMs, a higher proportion of the 30-mg upadacitinib group experienced resolution of peripheral or axial arthropathies at week 52, compared with the 15-mg and placebo groups (67% vs. 39% vs. 22%). The difference was statistically significant between the 30-mg and placebo groups (P = .010) but not between the 15-mg and placebo groups.
More participants in the 30-mg group also experienced resolution of anemia, compared with the 15-mg group and the placebo group (71% vs. 50% vs. 36%). Once again, the difference between 30-mg group and placebo was significant (P = .019).
When asked what physicians should be most concerned about when prescribing upadacitinib, Dr. Colombel pointed to the risks of serious infections, including herpes zoster. He added that there are potential risks of cardiovascular events, deep vein thrombosis, and cancers, “but it is too early to tell.”
Dr. Colombel advised physicians to follow the prescribing information for upadacitinib following FDA approval.
An ‘excellent presentation’
“Upadacitinib is a promising new option for patients with ulcerative colitis,” ECCO 2022 session cochair Annemarie de Vries, MD, PhD, told this news organization.
“The excellent presentation by Prof. Colombel further supports the high expectations by providing evidence on the effect of upadacitinib on extraintestinal manifestations,” said Dr. De Vries, a gastroenterologist at Erasmus Medical Center, Rotterdam, the Netherlands.
“For further conclusions on drug positioning, we have to await real-world data and head-to-head trials versus anti-TNF agents and vedolizumab,” she added.
The study was sponsored by AbbVie. Dr. Colombel has received research support from and is a speaker and consultant for AbbVie. Dr. De Vries reports no relevant financial relationships.
A version of this article first appeared on Medscape.com.
The selective Janus kinase (JAK) inhibitor upadacitinib resolved more extraintestinal manifestations (EIMs) of ulcerative colitis than placebo, according to an analysis of phase 3 study findings.
The 45-mg induction dose of upadacitinib, for example, resolved more anemia, peripheral arthropathy, and axial arthropathy than placebo. The 15-mg and 30-mg maintenance doses were also associated with greater resolution of EIMs, with the higher dose producing a significantly greater reduction in comparison with placebo.
“Upadacitinib was highly effective in decreasing ulcerative colitis activity, which is triggering the extraintestinal manifestations,” lead author Jean-Frederick Colombel, MD, told this news organization.
Dr. Colombel, a gastroenterologist and professor of medicine at Mount Sinai Icahn School of Medicine, New York, said he was not surprised to see this, given that the oral JAK inhibitor “has also demonstrated efficacy in rheumatoid arthritis, psoriatic arthritis, atopic dermatitis, and ankylosing spondylitis.”
He presented the study findings during an oral presentation Feb. 19 at the 17th congress of the European Crohn’s and Colitis Organisation.
In the United States, AbbVie is seeking approval from the U.S. Food and Drug Administration for upadacitinib (RINVOQ) to treat active, moderate to severe ulcerative colitis. The company submitted regulatory applications in September 2021 for this indication.
About 1 in 4 report EIMs
The researchers evaluated the U-ACHIEVE and U-ACCOMPLISH 8-week induction studies, in which 660 participants were randomly assigned to receive upadacitinib 45 mg and 328 patients were assigned to receive placebo. At baseline, 25% of treated patients and 27% of the placebo group had experienced at least one EIM.
The researchers also assessed outcomes of the 52-week U-ACHIEVE maintenance trial, in which 154 people with ulcerative colitis were randomly assigned to receive 30-mg upadacitinib, 148 to receive 15-mg upadacitinib, and 149 to receive placebo. Between 24% and 27% of participants in these groups reported at least one EIM at baseline.
Key findings
In the pooled induction studies, a higher proportion of participants in the upadacitinib group achieved resolution of any EIM at 8 weeks, compared with the placebo group (40% vs. 33%).
Regarding specific EIMs, a higher proportion of those in the upadacitinib group had achieved resolution of peripheral or axial arthropathies at 8 weeks, compared with the placebo group (55% vs. 42%), and more participants experienced resolution of anemia (38% vs. 33%).
Similar effects were observed in the maintenance study. Resolution of any EIM at 52 weeks was experienced by 66% of those in the 30-mg upadacitinib group, compared with 42% in the 15-mg upadacitinib group and 24% in the placebo group. The 30-mg results were significantly different than placebo (P < .001).
Regarding specific EIMs, a higher proportion of the 30-mg upadacitinib group experienced resolution of peripheral or axial arthropathies at week 52, compared with the 15-mg and placebo groups (67% vs. 39% vs. 22%). The difference was statistically significant between the 30-mg and placebo groups (P = .010) but not between the 15-mg and placebo groups.
More participants in the 30-mg group also experienced resolution of anemia, compared with the 15-mg group and the placebo group (71% vs. 50% vs. 36%). Once again, the difference between 30-mg group and placebo was significant (P = .019).
When asked what physicians should be most concerned about when prescribing upadacitinib, Dr. Colombel pointed to the risks of serious infections, including herpes zoster. He added that there are potential risks of cardiovascular events, deep vein thrombosis, and cancers, “but it is too early to tell.”
Dr. Colombel advised physicians to follow the prescribing information for upadacitinib following FDA approval.
An ‘excellent presentation’
“Upadacitinib is a promising new option for patients with ulcerative colitis,” ECCO 2022 session cochair Annemarie de Vries, MD, PhD, told this news organization.
“The excellent presentation by Prof. Colombel further supports the high expectations by providing evidence on the effect of upadacitinib on extraintestinal manifestations,” said Dr. De Vries, a gastroenterologist at Erasmus Medical Center, Rotterdam, the Netherlands.
“For further conclusions on drug positioning, we have to await real-world data and head-to-head trials versus anti-TNF agents and vedolizumab,” she added.
The study was sponsored by AbbVie. Dr. Colombel has received research support from and is a speaker and consultant for AbbVie. Dr. De Vries reports no relevant financial relationships.
A version of this article first appeared on Medscape.com.
The selective Janus kinase (JAK) inhibitor upadacitinib resolved more extraintestinal manifestations (EIMs) of ulcerative colitis than placebo, according to an analysis of phase 3 study findings.
The 45-mg induction dose of upadacitinib, for example, resolved more anemia, peripheral arthropathy, and axial arthropathy than placebo. The 15-mg and 30-mg maintenance doses were also associated with greater resolution of EIMs, with the higher dose producing a significantly greater reduction in comparison with placebo.
“Upadacitinib was highly effective in decreasing ulcerative colitis activity, which is triggering the extraintestinal manifestations,” lead author Jean-Frederick Colombel, MD, told this news organization.
Dr. Colombel, a gastroenterologist and professor of medicine at Mount Sinai Icahn School of Medicine, New York, said he was not surprised to see this, given that the oral JAK inhibitor “has also demonstrated efficacy in rheumatoid arthritis, psoriatic arthritis, atopic dermatitis, and ankylosing spondylitis.”
He presented the study findings during an oral presentation Feb. 19 at the 17th congress of the European Crohn’s and Colitis Organisation.
In the United States, AbbVie is seeking approval from the U.S. Food and Drug Administration for upadacitinib (RINVOQ) to treat active, moderate to severe ulcerative colitis. The company submitted regulatory applications in September 2021 for this indication.
About 1 in 4 report EIMs
The researchers evaluated the U-ACHIEVE and U-ACCOMPLISH 8-week induction studies, in which 660 participants were randomly assigned to receive upadacitinib 45 mg and 328 patients were assigned to receive placebo. At baseline, 25% of treated patients and 27% of the placebo group had experienced at least one EIM.
The researchers also assessed outcomes of the 52-week U-ACHIEVE maintenance trial, in which 154 people with ulcerative colitis were randomly assigned to receive 30-mg upadacitinib, 148 to receive 15-mg upadacitinib, and 149 to receive placebo. Between 24% and 27% of participants in these groups reported at least one EIM at baseline.
Key findings
In the pooled induction studies, a higher proportion of participants in the upadacitinib group achieved resolution of any EIM at 8 weeks, compared with the placebo group (40% vs. 33%).
Regarding specific EIMs, a higher proportion of those in the upadacitinib group had achieved resolution of peripheral or axial arthropathies at 8 weeks, compared with the placebo group (55% vs. 42%), and more participants experienced resolution of anemia (38% vs. 33%).
Similar effects were observed in the maintenance study. Resolution of any EIM at 52 weeks was experienced by 66% of those in the 30-mg upadacitinib group, compared with 42% in the 15-mg upadacitinib group and 24% in the placebo group. The 30-mg results were significantly different than placebo (P < .001).
Regarding specific EIMs, a higher proportion of the 30-mg upadacitinib group experienced resolution of peripheral or axial arthropathies at week 52, compared with the 15-mg and placebo groups (67% vs. 39% vs. 22%). The difference was statistically significant between the 30-mg and placebo groups (P = .010) but not between the 15-mg and placebo groups.
More participants in the 30-mg group also experienced resolution of anemia, compared with the 15-mg group and the placebo group (71% vs. 50% vs. 36%). Once again, the difference between 30-mg group and placebo was significant (P = .019).
When asked what physicians should be most concerned about when prescribing upadacitinib, Dr. Colombel pointed to the risks of serious infections, including herpes zoster. He added that there are potential risks of cardiovascular events, deep vein thrombosis, and cancers, “but it is too early to tell.”
Dr. Colombel advised physicians to follow the prescribing information for upadacitinib following FDA approval.
An ‘excellent presentation’
“Upadacitinib is a promising new option for patients with ulcerative colitis,” ECCO 2022 session cochair Annemarie de Vries, MD, PhD, told this news organization.
“The excellent presentation by Prof. Colombel further supports the high expectations by providing evidence on the effect of upadacitinib on extraintestinal manifestations,” said Dr. De Vries, a gastroenterologist at Erasmus Medical Center, Rotterdam, the Netherlands.
“For further conclusions on drug positioning, we have to await real-world data and head-to-head trials versus anti-TNF agents and vedolizumab,” she added.
The study was sponsored by AbbVie. Dr. Colombel has received research support from and is a speaker and consultant for AbbVie. Dr. De Vries reports no relevant financial relationships.
A version of this article first appeared on Medscape.com.
FROM ECCO 2022
Let’s be more careful about the data—and commentary—we publish
In a recent letter to the editor, “25-hydroxyvitamin D concentration is key to analyzing vitamin D’s effects” (J Fam Pract. 2021;70:472), Dr. Grant links vitamin D supplementation with important health outcomes. He concludes that the positivity rate of SARS-CoV-2 was only 5.9% in people with higher concentrations of 25(OH)D vs 12.5% in those with lower concentrations. This is a flawed conclusion on the face of it, because the great confabulatory factor is behavior. Is it possible that those more likely to take supplemental vitamin D do so as a result of overall healthier lifestyles and choices (eg, vaccinations)? As health care representatives, we must be very careful about the data we publish and the commentary we attach to it, lest we advertise inadvertent follies. I see so much of that in our “peer-reviewed literature.”
I came to medicine as a chemist, and the rigors of peer review impressed upon the hard (fundamental) sciences are markedly different from those we “claim” adherence to in medicine. I find that some of the medical literature and study designs fall short of what would pass muster in the fundamental science industry. That is a shame! Such statements, as discussed here, have to be served for public consumption, and even to our colleagues, with a generous helping of skepticism and qualification.
RA Segal, MD, MPH
Gainesville, FL
In a recent letter to the editor, “25-hydroxyvitamin D concentration is key to analyzing vitamin D’s effects” (J Fam Pract. 2021;70:472), Dr. Grant links vitamin D supplementation with important health outcomes. He concludes that the positivity rate of SARS-CoV-2 was only 5.9% in people with higher concentrations of 25(OH)D vs 12.5% in those with lower concentrations. This is a flawed conclusion on the face of it, because the great confabulatory factor is behavior. Is it possible that those more likely to take supplemental vitamin D do so as a result of overall healthier lifestyles and choices (eg, vaccinations)? As health care representatives, we must be very careful about the data we publish and the commentary we attach to it, lest we advertise inadvertent follies. I see so much of that in our “peer-reviewed literature.”
I came to medicine as a chemist, and the rigors of peer review impressed upon the hard (fundamental) sciences are markedly different from those we “claim” adherence to in medicine. I find that some of the medical literature and study designs fall short of what would pass muster in the fundamental science industry. That is a shame! Such statements, as discussed here, have to be served for public consumption, and even to our colleagues, with a generous helping of skepticism and qualification.
RA Segal, MD, MPH
Gainesville, FL
In a recent letter to the editor, “25-hydroxyvitamin D concentration is key to analyzing vitamin D’s effects” (J Fam Pract. 2021;70:472), Dr. Grant links vitamin D supplementation with important health outcomes. He concludes that the positivity rate of SARS-CoV-2 was only 5.9% in people with higher concentrations of 25(OH)D vs 12.5% in those with lower concentrations. This is a flawed conclusion on the face of it, because the great confabulatory factor is behavior. Is it possible that those more likely to take supplemental vitamin D do so as a result of overall healthier lifestyles and choices (eg, vaccinations)? As health care representatives, we must be very careful about the data we publish and the commentary we attach to it, lest we advertise inadvertent follies. I see so much of that in our “peer-reviewed literature.”
I came to medicine as a chemist, and the rigors of peer review impressed upon the hard (fundamental) sciences are markedly different from those we “claim” adherence to in medicine. I find that some of the medical literature and study designs fall short of what would pass muster in the fundamental science industry. That is a shame! Such statements, as discussed here, have to be served for public consumption, and even to our colleagues, with a generous helping of skepticism and qualification.
RA Segal, MD, MPH
Gainesville, FL
Innumerable pulmonary nodules
A 56-year-old woman with a history of a thyroid goiter following a partial thyroidectomy presented to the emergency department with shortness of breath, progressive weakness, and fatigue. She also reported a poor appetite and unintentional weight loss of approximately 40 lbs over the past 2 months but had not sought medical care. She denied having a cough, chest pain, hemoptysis, hematemesis, fevers, chills, or night sweats.
Physical examination revealed a cachectic woman with tachycardia and tachypnea, along with diffuse coarse rales throughout both lungs. The patient’s initial heart rate was 101 beats/min; respiratory rate, 25 breaths/min; and oxygen saturation, 74% on room air. The results of a complete blood count and comprehensive metabolic panel were within normal limits. A chest radiograph was performed, showing innumerable subcentimeter- and pericentimeter-sized soft-tissue densities in both lungs (FIGURE 1). Computed tomography (CT) of the chest was subsequently obtained to better characterize the nodules (FIGURES 2A and 2B). The CT revealed innumerable noncalcified pulmonary nodules as well as multiple hilar masses suggestive of malignancy; however, infectious etiologies could not be ruled out.
As the patient was visiting from a tuberculosis-endemic area, she was empirically started on rifampin, isoniazid, pyrazinamide, and ethambutol (RIPE) therapy for treatment of Mycobacterium tuberculosis infection. Subsequently, polymerase chain reaction (PCR) testing and acid-fast bacillus sputum smear came back negative for M tuberculosis and RIPE therapy was stopped. Bacterial culture and fungal screens for Pneumocystis jirovecii, Coccidioides, Cryptococcus, and Histoplasma capsulatum were negative.
WHAT IS YOUR DIAGNOSIS?
HOW WOULD YOU TREAT THIS PATIENT?
Dx: Metastatic follicular thyroid carcinoma
A biopsy of one of the lung nodules was performed and showed strong positive staining for thyroglobulin and thyroid transcription factor-1, establishing a diagnosis of metastatic follicular thyroid carcinoma. Further imaging revealed additional metastases to the brain, liver, adrenal glands, and spine.
Follicular thyroid carcinoma is the second most common histologic type of thyroid cancer, comprising 10% to 15% of thyroid cancer cases.1 Distant metastases are not uncommon in this histologic type; about 11% of patients have distant metastases at presentation.2 Compared with papillary thyroid cancer, which spreads via the lymphatics, the follicular type can metastasize via vascular invasion, thus leading to its “aggressiveness” and frequent occurrence of metastasis outside the neck (most commonly to the lung).1 For this reason, an early diagnosis is important.3 In this case, the patient revealed that she hadn’t sought medical care at the onset of her symptoms due to financial limitations and limited access to medical providers; this likely contributed to the patient’s diagnosis at a late stage of disease.
Infectious and septic diseases are part of the differential Dx
The differential diagnosis for diffuse pulmonary nodules includes various infections, silicosis, coal worker’s pneumoconiosis, septic pulmonary emboli, and pulmonary sarcoidosis. All of these diagnoses can cause constitutional, as well as pulmonary, symptoms.
Infections, such as pulmonary tuberculosis, pulmonary coccidioidomycosis, or other cavitating infections, can be ruled out with specific testing for the organism of concern and/or culture.
Silicosis and coal worker’s pneumoconiosis generally cause lesions in the upper lobes and require a significant occupational exposure to silica or coal, respectively.
Continue to: Septic pulmonary emboli
Septic pulmonary emboli are usually seen in the context of sepsis, and there are positive blood cultures at the time of imaging.
Pulmonary sarcoidosis typically manifests with hilar and mediastinal lymphadenopathy and is often accompanied by other organ involvement.
There are options for treatment if diagnosis is made early
Thyroidectomy, radioiodine treatment, and thyroid-stimulating hormone suppressive therapy are the most commonly used therapies for treatment of follicular thyroid carcinoma.4 If follicular thyroid carcinoma is caught early (with only local involvement), 5-year relative survival rates are near 100%.5 However, outcomes are generally poor in patients who are of older age and those who have macronodular lung metastases or multiple bone metastases.6
Our patient was started on levothyroxine. Radioiodine and targeted drug therapy with a tyrosine kinase inhibitor were attempted, but the patient was unable to tolerate them due to her poor functional status. She was thus transitioned to hospice care.
1. Aschebrook-Kilfoy B, Grogan RH, Ward MH, et al. Follicular thyroid cancer incidence patterns in the United States, 1980-2009. Thyroid. 2013;23:1015-1021. doi: 10.1089/thy.2012.0356
2. Shaha AR, Shah JP, Loree TR. Differentiated thyroid cancer presenting initially with distant metastasis. Am J Surg. 1997;174:474-476. doi: 10.1016/s0002-9610(97)00158-x
3. Lim IIP, Hochman T, Blumberg SN, et al. Disparities in the initial presentation of differentiated thyroid cancer in a large public hospital and adjoining university teaching hospital. Thyroid. 2012;22:269-274. doi: 10.1089/thy.2010.0385
4. Grani G, Lamartina L, Durante C, et al. Follicular thyroid cancer and Hürthle cell carcinoma: challenges in diagnosis, treatment, and clinical management. Lancet Diabetes Endocrinol. 2018;6:500-514. doi: 10.1016/S2213-8587(17)30325-X
5. Thyroid cancer survival rates, by type and stage. American Cancer Society. Updated January 25, 2021. Accessed February 1, 2022. www.cancer.org/cancer/thyroid-cancer/detection-diagnosis-staging/survival-rates.html
6. Durante C, Haddy N, Baudin E, et al. Long-term outcome of 444 patients with distant metastases from papillary and follicular thyroid carcinoma: benefits and limits of radioiodine therapy. J Clin Endocrinol Metab. 2006;91:2892-2899. doi: 10.1210/jc.2005-2838
A 56-year-old woman with a history of a thyroid goiter following a partial thyroidectomy presented to the emergency department with shortness of breath, progressive weakness, and fatigue. She also reported a poor appetite and unintentional weight loss of approximately 40 lbs over the past 2 months but had not sought medical care. She denied having a cough, chest pain, hemoptysis, hematemesis, fevers, chills, or night sweats.
Physical examination revealed a cachectic woman with tachycardia and tachypnea, along with diffuse coarse rales throughout both lungs. The patient’s initial heart rate was 101 beats/min; respiratory rate, 25 breaths/min; and oxygen saturation, 74% on room air. The results of a complete blood count and comprehensive metabolic panel were within normal limits. A chest radiograph was performed, showing innumerable subcentimeter- and pericentimeter-sized soft-tissue densities in both lungs (FIGURE 1). Computed tomography (CT) of the chest was subsequently obtained to better characterize the nodules (FIGURES 2A and 2B). The CT revealed innumerable noncalcified pulmonary nodules as well as multiple hilar masses suggestive of malignancy; however, infectious etiologies could not be ruled out.
As the patient was visiting from a tuberculosis-endemic area, she was empirically started on rifampin, isoniazid, pyrazinamide, and ethambutol (RIPE) therapy for treatment of Mycobacterium tuberculosis infection. Subsequently, polymerase chain reaction (PCR) testing and acid-fast bacillus sputum smear came back negative for M tuberculosis and RIPE therapy was stopped. Bacterial culture and fungal screens for Pneumocystis jirovecii, Coccidioides, Cryptococcus, and Histoplasma capsulatum were negative.
WHAT IS YOUR DIAGNOSIS?
HOW WOULD YOU TREAT THIS PATIENT?
Dx: Metastatic follicular thyroid carcinoma
A biopsy of one of the lung nodules was performed and showed strong positive staining for thyroglobulin and thyroid transcription factor-1, establishing a diagnosis of metastatic follicular thyroid carcinoma. Further imaging revealed additional metastases to the brain, liver, adrenal glands, and spine.
Follicular thyroid carcinoma is the second most common histologic type of thyroid cancer, comprising 10% to 15% of thyroid cancer cases.1 Distant metastases are not uncommon in this histologic type; about 11% of patients have distant metastases at presentation.2 Compared with papillary thyroid cancer, which spreads via the lymphatics, the follicular type can metastasize via vascular invasion, thus leading to its “aggressiveness” and frequent occurrence of metastasis outside the neck (most commonly to the lung).1 For this reason, an early diagnosis is important.3 In this case, the patient revealed that she hadn’t sought medical care at the onset of her symptoms due to financial limitations and limited access to medical providers; this likely contributed to the patient’s diagnosis at a late stage of disease.
Infectious and septic diseases are part of the differential Dx
The differential diagnosis for diffuse pulmonary nodules includes various infections, silicosis, coal worker’s pneumoconiosis, septic pulmonary emboli, and pulmonary sarcoidosis. All of these diagnoses can cause constitutional, as well as pulmonary, symptoms.
Infections, such as pulmonary tuberculosis, pulmonary coccidioidomycosis, or other cavitating infections, can be ruled out with specific testing for the organism of concern and/or culture.
Silicosis and coal worker’s pneumoconiosis generally cause lesions in the upper lobes and require a significant occupational exposure to silica or coal, respectively.
Continue to: Septic pulmonary emboli
Septic pulmonary emboli are usually seen in the context of sepsis, and there are positive blood cultures at the time of imaging.
Pulmonary sarcoidosis typically manifests with hilar and mediastinal lymphadenopathy and is often accompanied by other organ involvement.
There are options for treatment if diagnosis is made early
Thyroidectomy, radioiodine treatment, and thyroid-stimulating hormone suppressive therapy are the most commonly used therapies for treatment of follicular thyroid carcinoma.4 If follicular thyroid carcinoma is caught early (with only local involvement), 5-year relative survival rates are near 100%.5 However, outcomes are generally poor in patients who are of older age and those who have macronodular lung metastases or multiple bone metastases.6
Our patient was started on levothyroxine. Radioiodine and targeted drug therapy with a tyrosine kinase inhibitor were attempted, but the patient was unable to tolerate them due to her poor functional status. She was thus transitioned to hospice care.
A 56-year-old woman with a history of a thyroid goiter following a partial thyroidectomy presented to the emergency department with shortness of breath, progressive weakness, and fatigue. She also reported a poor appetite and unintentional weight loss of approximately 40 lbs over the past 2 months but had not sought medical care. She denied having a cough, chest pain, hemoptysis, hematemesis, fevers, chills, or night sweats.
Physical examination revealed a cachectic woman with tachycardia and tachypnea, along with diffuse coarse rales throughout both lungs. The patient’s initial heart rate was 101 beats/min; respiratory rate, 25 breaths/min; and oxygen saturation, 74% on room air. The results of a complete blood count and comprehensive metabolic panel were within normal limits. A chest radiograph was performed, showing innumerable subcentimeter- and pericentimeter-sized soft-tissue densities in both lungs (FIGURE 1). Computed tomography (CT) of the chest was subsequently obtained to better characterize the nodules (FIGURES 2A and 2B). The CT revealed innumerable noncalcified pulmonary nodules as well as multiple hilar masses suggestive of malignancy; however, infectious etiologies could not be ruled out.
As the patient was visiting from a tuberculosis-endemic area, she was empirically started on rifampin, isoniazid, pyrazinamide, and ethambutol (RIPE) therapy for treatment of Mycobacterium tuberculosis infection. Subsequently, polymerase chain reaction (PCR) testing and acid-fast bacillus sputum smear came back negative for M tuberculosis and RIPE therapy was stopped. Bacterial culture and fungal screens for Pneumocystis jirovecii, Coccidioides, Cryptococcus, and Histoplasma capsulatum were negative.
WHAT IS YOUR DIAGNOSIS?
HOW WOULD YOU TREAT THIS PATIENT?
Dx: Metastatic follicular thyroid carcinoma
A biopsy of one of the lung nodules was performed and showed strong positive staining for thyroglobulin and thyroid transcription factor-1, establishing a diagnosis of metastatic follicular thyroid carcinoma. Further imaging revealed additional metastases to the brain, liver, adrenal glands, and spine.
Follicular thyroid carcinoma is the second most common histologic type of thyroid cancer, comprising 10% to 15% of thyroid cancer cases.1 Distant metastases are not uncommon in this histologic type; about 11% of patients have distant metastases at presentation.2 Compared with papillary thyroid cancer, which spreads via the lymphatics, the follicular type can metastasize via vascular invasion, thus leading to its “aggressiveness” and frequent occurrence of metastasis outside the neck (most commonly to the lung).1 For this reason, an early diagnosis is important.3 In this case, the patient revealed that she hadn’t sought medical care at the onset of her symptoms due to financial limitations and limited access to medical providers; this likely contributed to the patient’s diagnosis at a late stage of disease.
Infectious and septic diseases are part of the differential Dx
The differential diagnosis for diffuse pulmonary nodules includes various infections, silicosis, coal worker’s pneumoconiosis, septic pulmonary emboli, and pulmonary sarcoidosis. All of these diagnoses can cause constitutional, as well as pulmonary, symptoms.
Infections, such as pulmonary tuberculosis, pulmonary coccidioidomycosis, or other cavitating infections, can be ruled out with specific testing for the organism of concern and/or culture.
Silicosis and coal worker’s pneumoconiosis generally cause lesions in the upper lobes and require a significant occupational exposure to silica or coal, respectively.
Continue to: Septic pulmonary emboli
Septic pulmonary emboli are usually seen in the context of sepsis, and there are positive blood cultures at the time of imaging.
Pulmonary sarcoidosis typically manifests with hilar and mediastinal lymphadenopathy and is often accompanied by other organ involvement.
There are options for treatment if diagnosis is made early
Thyroidectomy, radioiodine treatment, and thyroid-stimulating hormone suppressive therapy are the most commonly used therapies for treatment of follicular thyroid carcinoma.4 If follicular thyroid carcinoma is caught early (with only local involvement), 5-year relative survival rates are near 100%.5 However, outcomes are generally poor in patients who are of older age and those who have macronodular lung metastases or multiple bone metastases.6
Our patient was started on levothyroxine. Radioiodine and targeted drug therapy with a tyrosine kinase inhibitor were attempted, but the patient was unable to tolerate them due to her poor functional status. She was thus transitioned to hospice care.
1. Aschebrook-Kilfoy B, Grogan RH, Ward MH, et al. Follicular thyroid cancer incidence patterns in the United States, 1980-2009. Thyroid. 2013;23:1015-1021. doi: 10.1089/thy.2012.0356
2. Shaha AR, Shah JP, Loree TR. Differentiated thyroid cancer presenting initially with distant metastasis. Am J Surg. 1997;174:474-476. doi: 10.1016/s0002-9610(97)00158-x
3. Lim IIP, Hochman T, Blumberg SN, et al. Disparities in the initial presentation of differentiated thyroid cancer in a large public hospital and adjoining university teaching hospital. Thyroid. 2012;22:269-274. doi: 10.1089/thy.2010.0385
4. Grani G, Lamartina L, Durante C, et al. Follicular thyroid cancer and Hürthle cell carcinoma: challenges in diagnosis, treatment, and clinical management. Lancet Diabetes Endocrinol. 2018;6:500-514. doi: 10.1016/S2213-8587(17)30325-X
5. Thyroid cancer survival rates, by type and stage. American Cancer Society. Updated January 25, 2021. Accessed February 1, 2022. www.cancer.org/cancer/thyroid-cancer/detection-diagnosis-staging/survival-rates.html
6. Durante C, Haddy N, Baudin E, et al. Long-term outcome of 444 patients with distant metastases from papillary and follicular thyroid carcinoma: benefits and limits of radioiodine therapy. J Clin Endocrinol Metab. 2006;91:2892-2899. doi: 10.1210/jc.2005-2838
1. Aschebrook-Kilfoy B, Grogan RH, Ward MH, et al. Follicular thyroid cancer incidence patterns in the United States, 1980-2009. Thyroid. 2013;23:1015-1021. doi: 10.1089/thy.2012.0356
2. Shaha AR, Shah JP, Loree TR. Differentiated thyroid cancer presenting initially with distant metastasis. Am J Surg. 1997;174:474-476. doi: 10.1016/s0002-9610(97)00158-x
3. Lim IIP, Hochman T, Blumberg SN, et al. Disparities in the initial presentation of differentiated thyroid cancer in a large public hospital and adjoining university teaching hospital. Thyroid. 2012;22:269-274. doi: 10.1089/thy.2010.0385
4. Grani G, Lamartina L, Durante C, et al. Follicular thyroid cancer and Hürthle cell carcinoma: challenges in diagnosis, treatment, and clinical management. Lancet Diabetes Endocrinol. 2018;6:500-514. doi: 10.1016/S2213-8587(17)30325-X
5. Thyroid cancer survival rates, by type and stage. American Cancer Society. Updated January 25, 2021. Accessed February 1, 2022. www.cancer.org/cancer/thyroid-cancer/detection-diagnosis-staging/survival-rates.html
6. Durante C, Haddy N, Baudin E, et al. Long-term outcome of 444 patients with distant metastases from papillary and follicular thyroid carcinoma: benefits and limits of radioiodine therapy. J Clin Endocrinol Metab. 2006;91:2892-2899. doi: 10.1210/jc.2005-2838
Early menopause, early dementia risk, study suggests
Earlier menopause appears to be associated with a higher risk of dementia, and earlier onset of dementia, compared with menopause at normal age or later, according to a large study.
“Being aware of this increased risk can help women practice strategies to prevent dementia and to work with their physicians to closely monitor their cognitive status as they age,” study investigator Wenting Hao, MD, with Shandong University, Jinan, China, says in a news release.
The findings were presented in an e-poster March 1 at the Epidemiology, Prevention, Lifestyle & Cardiometabolic Health (EPI|Lifestyle) 2022 conference sponsored by the American Heart Association.
UK Biobank data
Dr. Hao and colleagues examined health data for 153,291 women who were 60 years old on average when they became participants in the UK Biobank.
Age at menopause was categorized as premature (younger than age 40), early (40 to 44 years), reference (45 to 51), 52 to 55 years, and 55+ years.
Compared with women who entered menopause around age 50 years (reference), women who experienced premature menopause were 35% more likely to develop some type of dementia later in life (hazard ratio, 1.35; 95% confidence interval, 1.22 to 1.91).
Women with early menopause were also more likely to develop early-onset dementia, that is, before age 65 (HR, 1.31; 95% confidence interval, 1.07 to 1.72).
Women who entered menopause later (at age 52+) had dementia risk similar to women who entered menopause at the average age of 50 to 51 years.
The results were adjusted for relevant cofactors, including age at last exam, race, educational level, cigarette and alcohol use, body mass index, cardiovascular disease, diabetes, income, and leisure and physical activities.
Blame it on estrogen?
Reduced estrogen levels may be a factor in the possible connection between early menopause and dementia, Dr. Hao and her colleagues say.
Estradiol plays a key role in a range of neurological functions, so the reduction of endogenous estrogen at menopause may aggravate brain changes related to neurodegenerative disease and speed up progression of dementia, they explain.
“We know that the lack of estrogen over the long term enhances oxidative stress, which may increase brain aging and lead to cognitive impairment,” Dr. Hao adds.
Limitations of the study include reliance on self-reported information about age at menopause onset.
Also, the researchers did not evaluate dementia rates in women who had a naturally occurring early menopause separate from the women with surgery-induced menopause, which may affect the results.
Finally, the data used for this study included mostly White women living in the U.K. and may not generalize to other populations.
Supportive evidence, critical area of research
The U.K. study supports results of a previously reported Kaiser Permanente study, which showed women who entered menopause at age 45 or younger were at 28% greater dementia risk, compared with women who experienced menopause after age 45.
Reached for comment, Heather Snyder, PhD, Alzheimer’s Association vice president of medical and scientific relations, noted that nearly two-thirds of Americans with Alzheimer’s are women.
“We know Alzheimer’s and other dementias impact a greater number of women than men, but we don’t know why,” she told this news organization.
“Lifelong differences in women may affect their risk or affect what is contributing to their underlying biology of the disease, and we need more research to better understand what may be these contributing factors,” said Dr. Snyder.
“Reproductive history is one critical area being studied. The physical and hormonal changes that occur during menopause – as well as other hormonal changes throughout life – are considerable, and it’s important to understand what impact, if any, these changes may have on the brain,” Dr. Snyder added.
“The potential link between reproduction history and brain health is intriguing, but much more research in this area is needed to understand these links,” she said.
The study was funded by the Start-up Foundation for Scientific Research at Shandong University. Dr. Hao and Dr. Snyder have disclosed no relevant financial relationships.
A version of this article first appeared on Medscape.com.
Earlier menopause appears to be associated with a higher risk of dementia, and earlier onset of dementia, compared with menopause at normal age or later, according to a large study.
“Being aware of this increased risk can help women practice strategies to prevent dementia and to work with their physicians to closely monitor their cognitive status as they age,” study investigator Wenting Hao, MD, with Shandong University, Jinan, China, says in a news release.
The findings were presented in an e-poster March 1 at the Epidemiology, Prevention, Lifestyle & Cardiometabolic Health (EPI|Lifestyle) 2022 conference sponsored by the American Heart Association.
UK Biobank data
Dr. Hao and colleagues examined health data for 153,291 women who were 60 years old on average when they became participants in the UK Biobank.
Age at menopause was categorized as premature (younger than age 40), early (40 to 44 years), reference (45 to 51), 52 to 55 years, and 55+ years.
Compared with women who entered menopause around age 50 years (reference), women who experienced premature menopause were 35% more likely to develop some type of dementia later in life (hazard ratio, 1.35; 95% confidence interval, 1.22 to 1.91).
Women with early menopause were also more likely to develop early-onset dementia, that is, before age 65 (HR, 1.31; 95% confidence interval, 1.07 to 1.72).
Women who entered menopause later (at age 52+) had dementia risk similar to women who entered menopause at the average age of 50 to 51 years.
The results were adjusted for relevant cofactors, including age at last exam, race, educational level, cigarette and alcohol use, body mass index, cardiovascular disease, diabetes, income, and leisure and physical activities.
Blame it on estrogen?
Reduced estrogen levels may be a factor in the possible connection between early menopause and dementia, Dr. Hao and her colleagues say.
Estradiol plays a key role in a range of neurological functions, so the reduction of endogenous estrogen at menopause may aggravate brain changes related to neurodegenerative disease and speed up progression of dementia, they explain.
“We know that the lack of estrogen over the long term enhances oxidative stress, which may increase brain aging and lead to cognitive impairment,” Dr. Hao adds.
Limitations of the study include reliance on self-reported information about age at menopause onset.
Also, the researchers did not evaluate dementia rates in women who had a naturally occurring early menopause separate from the women with surgery-induced menopause, which may affect the results.
Finally, the data used for this study included mostly White women living in the U.K. and may not generalize to other populations.
Supportive evidence, critical area of research
The U.K. study supports results of a previously reported Kaiser Permanente study, which showed women who entered menopause at age 45 or younger were at 28% greater dementia risk, compared with women who experienced menopause after age 45.
Reached for comment, Heather Snyder, PhD, Alzheimer’s Association vice president of medical and scientific relations, noted that nearly two-thirds of Americans with Alzheimer’s are women.
“We know Alzheimer’s and other dementias impact a greater number of women than men, but we don’t know why,” she told this news organization.
“Lifelong differences in women may affect their risk or affect what is contributing to their underlying biology of the disease, and we need more research to better understand what may be these contributing factors,” said Dr. Snyder.
“Reproductive history is one critical area being studied. The physical and hormonal changes that occur during menopause – as well as other hormonal changes throughout life – are considerable, and it’s important to understand what impact, if any, these changes may have on the brain,” Dr. Snyder added.
“The potential link between reproduction history and brain health is intriguing, but much more research in this area is needed to understand these links,” she said.
The study was funded by the Start-up Foundation for Scientific Research at Shandong University. Dr. Hao and Dr. Snyder have disclosed no relevant financial relationships.
A version of this article first appeared on Medscape.com.
Earlier menopause appears to be associated with a higher risk of dementia, and earlier onset of dementia, compared with menopause at normal age or later, according to a large study.
“Being aware of this increased risk can help women practice strategies to prevent dementia and to work with their physicians to closely monitor their cognitive status as they age,” study investigator Wenting Hao, MD, with Shandong University, Jinan, China, says in a news release.
The findings were presented in an e-poster March 1 at the Epidemiology, Prevention, Lifestyle & Cardiometabolic Health (EPI|Lifestyle) 2022 conference sponsored by the American Heart Association.
UK Biobank data
Dr. Hao and colleagues examined health data for 153,291 women who were 60 years old on average when they became participants in the UK Biobank.
Age at menopause was categorized as premature (younger than age 40), early (40 to 44 years), reference (45 to 51), 52 to 55 years, and 55+ years.
Compared with women who entered menopause around age 50 years (reference), women who experienced premature menopause were 35% more likely to develop some type of dementia later in life (hazard ratio, 1.35; 95% confidence interval, 1.22 to 1.91).
Women with early menopause were also more likely to develop early-onset dementia, that is, before age 65 (HR, 1.31; 95% confidence interval, 1.07 to 1.72).
Women who entered menopause later (at age 52+) had dementia risk similar to women who entered menopause at the average age of 50 to 51 years.
The results were adjusted for relevant cofactors, including age at last exam, race, educational level, cigarette and alcohol use, body mass index, cardiovascular disease, diabetes, income, and leisure and physical activities.
Blame it on estrogen?
Reduced estrogen levels may be a factor in the possible connection between early menopause and dementia, Dr. Hao and her colleagues say.
Estradiol plays a key role in a range of neurological functions, so the reduction of endogenous estrogen at menopause may aggravate brain changes related to neurodegenerative disease and speed up progression of dementia, they explain.
“We know that the lack of estrogen over the long term enhances oxidative stress, which may increase brain aging and lead to cognitive impairment,” Dr. Hao adds.
Limitations of the study include reliance on self-reported information about age at menopause onset.
Also, the researchers did not evaluate dementia rates in women who had a naturally occurring early menopause separate from the women with surgery-induced menopause, which may affect the results.
Finally, the data used for this study included mostly White women living in the U.K. and may not generalize to other populations.
Supportive evidence, critical area of research
The U.K. study supports results of a previously reported Kaiser Permanente study, which showed women who entered menopause at age 45 or younger were at 28% greater dementia risk, compared with women who experienced menopause after age 45.
Reached for comment, Heather Snyder, PhD, Alzheimer’s Association vice president of medical and scientific relations, noted that nearly two-thirds of Americans with Alzheimer’s are women.
“We know Alzheimer’s and other dementias impact a greater number of women than men, but we don’t know why,” she told this news organization.
“Lifelong differences in women may affect their risk or affect what is contributing to their underlying biology of the disease, and we need more research to better understand what may be these contributing factors,” said Dr. Snyder.
“Reproductive history is one critical area being studied. The physical and hormonal changes that occur during menopause – as well as other hormonal changes throughout life – are considerable, and it’s important to understand what impact, if any, these changes may have on the brain,” Dr. Snyder added.
“The potential link between reproduction history and brain health is intriguing, but much more research in this area is needed to understand these links,” she said.
The study was funded by the Start-up Foundation for Scientific Research at Shandong University. Dr. Hao and Dr. Snyder have disclosed no relevant financial relationships.
A version of this article first appeared on Medscape.com.
Depression, suicidal ideation continue to plague physicians: Survey
Now, as they bear the weight of a multiyear pandemic alongside the perpetual struggle to maintain some semblance of work-life balance, their resiliency has been stretched to the brink.
In 2022, the Medscape Physician Suicide Report surveyed more than 13,000 physicians in 29 specialties who were candid about their experiences with suicidal thoughts, how they support their besieged colleagues, and their go-to coping strategies.
Overall, 21% of physicians reported having feelings of depression. Of those, 24% had clinical depression and 64% had colloquial depression. Physicians who felt sad or blue decreased slightly, compared with the 2021 report, but the number of physicians experiencing severe depression rose 4%.
One in 10 physicians said they have thought about or attempted suicide. However, the number of physicians with suicidal thoughts dropped to 9%, down substantially from the 22% who reported similar feelings in 2020.
Still, there was a slight uptick in women physicians contemplating suicide, likely linked to their larger share of childcare and family responsibilities.
“They have needed to pull double duty even more than usual, and that may have increased their sense of burnout and vulnerability to suicidal thoughts,” said Andrea Giedinghagen, MD, assistant professor in the department of psychiatry at Washington University in St. Louis, and coauthor of “Physician Suicide: A Call to Action
Fighting the stigma of seeking mental health help
Although the number of physicians attempting, but not completing suicide, has remained steady at 1% for several years, the recent passage of the Dr. Lorna Breen Health Care Provider Protection Act by Congress aims to drive that figure even lower. Dr. Breen, an ED physician at New York–Presbyterian Hospital, died by suicide in April 2020. Overwhelmed by the onslaught of COVID patients, Dr. Breen was reluctant to seek mental health services for fear of being ostracized.
“Many physicians don’t seek mental health care due to fear of negative consequences in the workplace, including retribution, exclusion, loss of license, or even their job,” Gary Price, MD, president of The Physicians Foundation, told this news organization. “This was the experience of Dr. Lorna Breen. She was convinced that if she talked to a professional, she would lose her medical license. Perhaps if Dr. Breen was equipped with the accurate information – there is no mental health reporting requirement in her state’s medical license application – it might have saved her life.”
This same stigma was reflected in the survey, with one physician saying: “I’m afraid that if I spoke to a therapist, I’d have to report receiving psychiatric treatment to credentialing or licensing boards.” Roughly 40% of survey respondents, regardless of age, chose not to disclose their suicidal thoughts to anyone, not even a family member or suicide hotline. And just a tiny portion of physicians (10% of men and 13% of women) said that a colleague had discussed their suicidal thoughts with them.
“There is a longstanding culture of silence around physician mental health in the medical community,” said Dr. Price. “The strategies within the Act are critical to fixing this culture and making it acceptable and normalized for physicians to seek mental health care,” and for it to “become a fundamental and ongoing element of being a practicing physician.”
As part of the legislation, the Department of Health & Human Services must award grants to hospitals, medical associations, and other entities to facilitate mental health programs for providers. They must also establish policy recommendations and conduct campaigns to improve providers’ mental and behavioral health, encourage providers to seek mental health support and assistance, remove barriers to such treatment, and identify best practices to prevent suicide and promote resiliency
Addressing barriers to mental health
The new bill is a step in the right direction, but Dr. Price said health organizations must do more to address the six key structural barriers that are “discouraging physicians from seeking [mental health] help,” such as the inclusion of “intrusive mental health questions on medical board, hospital credentialing, and malpractice insurance applications.”
In addition, employers should allow physicians to seek out-of-network mental health services, if necessary, and not cause further humiliation by requiring them to be treated by colleagues within their hospital system. A similar proposal has recently been introduced and is gaining traction in Utah, following the suicide of ED physician Scott Jolley, MD, in 2021 after he was admitted for psychiatric care where he worked.
Diminishing the stigma surrounding physicians’ mental health encourages a more open dialogue, so if a colleague reaches out – listen. “Start by thanking the colleague for sharing the information: ‘I’m sure that wasn’t easy but I appreciate that you respect me enough to share this. Let’s talk more,’ ” said Michael F. Myers, MD, professor of clinical psychiatry at State University of New York, Brooklyn . “Then ask what you can do to help, which cuts down on the sense of isolation that colleague may feel.”
According to the survey, many physicians have developed strategies to support their happiness and mental health. Although fewer than 10% said reducing work hours or transitioning to a part-time schedule was most effective, the majority of physicians relied on spending time with family and friends (68%) – a choice that has considerable benefits.
“Close and intimate relationships are the single most protective factor for our mental health,” said Peter Yellowlees, MBBS, MD, chief wellness officer for UC Davis Health and professor of psychiatry at the University of California, Davis. “Isolation and loneliness are very important stressors, and we know that about 25% of the population reports being lonely.”
A version of this article first appeared on Medscape.com.
Now, as they bear the weight of a multiyear pandemic alongside the perpetual struggle to maintain some semblance of work-life balance, their resiliency has been stretched to the brink.
In 2022, the Medscape Physician Suicide Report surveyed more than 13,000 physicians in 29 specialties who were candid about their experiences with suicidal thoughts, how they support their besieged colleagues, and their go-to coping strategies.
Overall, 21% of physicians reported having feelings of depression. Of those, 24% had clinical depression and 64% had colloquial depression. Physicians who felt sad or blue decreased slightly, compared with the 2021 report, but the number of physicians experiencing severe depression rose 4%.
One in 10 physicians said they have thought about or attempted suicide. However, the number of physicians with suicidal thoughts dropped to 9%, down substantially from the 22% who reported similar feelings in 2020.
Still, there was a slight uptick in women physicians contemplating suicide, likely linked to their larger share of childcare and family responsibilities.
“They have needed to pull double duty even more than usual, and that may have increased their sense of burnout and vulnerability to suicidal thoughts,” said Andrea Giedinghagen, MD, assistant professor in the department of psychiatry at Washington University in St. Louis, and coauthor of “Physician Suicide: A Call to Action
Fighting the stigma of seeking mental health help
Although the number of physicians attempting, but not completing suicide, has remained steady at 1% for several years, the recent passage of the Dr. Lorna Breen Health Care Provider Protection Act by Congress aims to drive that figure even lower. Dr. Breen, an ED physician at New York–Presbyterian Hospital, died by suicide in April 2020. Overwhelmed by the onslaught of COVID patients, Dr. Breen was reluctant to seek mental health services for fear of being ostracized.
“Many physicians don’t seek mental health care due to fear of negative consequences in the workplace, including retribution, exclusion, loss of license, or even their job,” Gary Price, MD, president of The Physicians Foundation, told this news organization. “This was the experience of Dr. Lorna Breen. She was convinced that if she talked to a professional, she would lose her medical license. Perhaps if Dr. Breen was equipped with the accurate information – there is no mental health reporting requirement in her state’s medical license application – it might have saved her life.”
This same stigma was reflected in the survey, with one physician saying: “I’m afraid that if I spoke to a therapist, I’d have to report receiving psychiatric treatment to credentialing or licensing boards.” Roughly 40% of survey respondents, regardless of age, chose not to disclose their suicidal thoughts to anyone, not even a family member or suicide hotline. And just a tiny portion of physicians (10% of men and 13% of women) said that a colleague had discussed their suicidal thoughts with them.
“There is a longstanding culture of silence around physician mental health in the medical community,” said Dr. Price. “The strategies within the Act are critical to fixing this culture and making it acceptable and normalized for physicians to seek mental health care,” and for it to “become a fundamental and ongoing element of being a practicing physician.”
As part of the legislation, the Department of Health & Human Services must award grants to hospitals, medical associations, and other entities to facilitate mental health programs for providers. They must also establish policy recommendations and conduct campaigns to improve providers’ mental and behavioral health, encourage providers to seek mental health support and assistance, remove barriers to such treatment, and identify best practices to prevent suicide and promote resiliency
Addressing barriers to mental health
The new bill is a step in the right direction, but Dr. Price said health organizations must do more to address the six key structural barriers that are “discouraging physicians from seeking [mental health] help,” such as the inclusion of “intrusive mental health questions on medical board, hospital credentialing, and malpractice insurance applications.”
In addition, employers should allow physicians to seek out-of-network mental health services, if necessary, and not cause further humiliation by requiring them to be treated by colleagues within their hospital system. A similar proposal has recently been introduced and is gaining traction in Utah, following the suicide of ED physician Scott Jolley, MD, in 2021 after he was admitted for psychiatric care where he worked.
Diminishing the stigma surrounding physicians’ mental health encourages a more open dialogue, so if a colleague reaches out – listen. “Start by thanking the colleague for sharing the information: ‘I’m sure that wasn’t easy but I appreciate that you respect me enough to share this. Let’s talk more,’ ” said Michael F. Myers, MD, professor of clinical psychiatry at State University of New York, Brooklyn . “Then ask what you can do to help, which cuts down on the sense of isolation that colleague may feel.”
According to the survey, many physicians have developed strategies to support their happiness and mental health. Although fewer than 10% said reducing work hours or transitioning to a part-time schedule was most effective, the majority of physicians relied on spending time with family and friends (68%) – a choice that has considerable benefits.
“Close and intimate relationships are the single most protective factor for our mental health,” said Peter Yellowlees, MBBS, MD, chief wellness officer for UC Davis Health and professor of psychiatry at the University of California, Davis. “Isolation and loneliness are very important stressors, and we know that about 25% of the population reports being lonely.”
A version of this article first appeared on Medscape.com.
Now, as they bear the weight of a multiyear pandemic alongside the perpetual struggle to maintain some semblance of work-life balance, their resiliency has been stretched to the brink.
In 2022, the Medscape Physician Suicide Report surveyed more than 13,000 physicians in 29 specialties who were candid about their experiences with suicidal thoughts, how they support their besieged colleagues, and their go-to coping strategies.
Overall, 21% of physicians reported having feelings of depression. Of those, 24% had clinical depression and 64% had colloquial depression. Physicians who felt sad or blue decreased slightly, compared with the 2021 report, but the number of physicians experiencing severe depression rose 4%.
One in 10 physicians said they have thought about or attempted suicide. However, the number of physicians with suicidal thoughts dropped to 9%, down substantially from the 22% who reported similar feelings in 2020.
Still, there was a slight uptick in women physicians contemplating suicide, likely linked to their larger share of childcare and family responsibilities.
“They have needed to pull double duty even more than usual, and that may have increased their sense of burnout and vulnerability to suicidal thoughts,” said Andrea Giedinghagen, MD, assistant professor in the department of psychiatry at Washington University in St. Louis, and coauthor of “Physician Suicide: A Call to Action
Fighting the stigma of seeking mental health help
Although the number of physicians attempting, but not completing suicide, has remained steady at 1% for several years, the recent passage of the Dr. Lorna Breen Health Care Provider Protection Act by Congress aims to drive that figure even lower. Dr. Breen, an ED physician at New York–Presbyterian Hospital, died by suicide in April 2020. Overwhelmed by the onslaught of COVID patients, Dr. Breen was reluctant to seek mental health services for fear of being ostracized.
“Many physicians don’t seek mental health care due to fear of negative consequences in the workplace, including retribution, exclusion, loss of license, or even their job,” Gary Price, MD, president of The Physicians Foundation, told this news organization. “This was the experience of Dr. Lorna Breen. She was convinced that if she talked to a professional, she would lose her medical license. Perhaps if Dr. Breen was equipped with the accurate information – there is no mental health reporting requirement in her state’s medical license application – it might have saved her life.”
This same stigma was reflected in the survey, with one physician saying: “I’m afraid that if I spoke to a therapist, I’d have to report receiving psychiatric treatment to credentialing or licensing boards.” Roughly 40% of survey respondents, regardless of age, chose not to disclose their suicidal thoughts to anyone, not even a family member or suicide hotline. And just a tiny portion of physicians (10% of men and 13% of women) said that a colleague had discussed their suicidal thoughts with them.
“There is a longstanding culture of silence around physician mental health in the medical community,” said Dr. Price. “The strategies within the Act are critical to fixing this culture and making it acceptable and normalized for physicians to seek mental health care,” and for it to “become a fundamental and ongoing element of being a practicing physician.”
As part of the legislation, the Department of Health & Human Services must award grants to hospitals, medical associations, and other entities to facilitate mental health programs for providers. They must also establish policy recommendations and conduct campaigns to improve providers’ mental and behavioral health, encourage providers to seek mental health support and assistance, remove barriers to such treatment, and identify best practices to prevent suicide and promote resiliency
Addressing barriers to mental health
The new bill is a step in the right direction, but Dr. Price said health organizations must do more to address the six key structural barriers that are “discouraging physicians from seeking [mental health] help,” such as the inclusion of “intrusive mental health questions on medical board, hospital credentialing, and malpractice insurance applications.”
In addition, employers should allow physicians to seek out-of-network mental health services, if necessary, and not cause further humiliation by requiring them to be treated by colleagues within their hospital system. A similar proposal has recently been introduced and is gaining traction in Utah, following the suicide of ED physician Scott Jolley, MD, in 2021 after he was admitted for psychiatric care where he worked.
Diminishing the stigma surrounding physicians’ mental health encourages a more open dialogue, so if a colleague reaches out – listen. “Start by thanking the colleague for sharing the information: ‘I’m sure that wasn’t easy but I appreciate that you respect me enough to share this. Let’s talk more,’ ” said Michael F. Myers, MD, professor of clinical psychiatry at State University of New York, Brooklyn . “Then ask what you can do to help, which cuts down on the sense of isolation that colleague may feel.”
According to the survey, many physicians have developed strategies to support their happiness and mental health. Although fewer than 10% said reducing work hours or transitioning to a part-time schedule was most effective, the majority of physicians relied on spending time with family and friends (68%) – a choice that has considerable benefits.
“Close and intimate relationships are the single most protective factor for our mental health,” said Peter Yellowlees, MBBS, MD, chief wellness officer for UC Davis Health and professor of psychiatry at the University of California, Davis. “Isolation and loneliness are very important stressors, and we know that about 25% of the population reports being lonely.”
A version of this article first appeared on Medscape.com.
3-year-old girl • fever • cervical lymphadenopathy • leukocytosis • Dx?
THE CASE
A previously healthy 3-year-old girl presented to the emergency department with 4 days of fever and 2 days of right-side neck pain. The maximum temperature at home was 103 °F. The patient was irritable and vomited once. There were no other apparent or reported symptoms.
The neck exam was notable for nonfluctuant, swollen, and tender lymph nodes on the right side. Her sclera and conjunctiva were clear, and her oropharynx was unremarkable. Lab work revealed leukocytosis, with a white blood cell (WBC) count of 15.5 × 103/µL (normal range, 4.0-10.0 × 103/µL). She was given one 20 cc/kg normal saline bolus, started on intravenous clindamycin for presumed cervical lymphadenitis, and admitted to the hospital.
On Day 2, the patient developed a fine maculopapular rash on her chest, abdomen, and back. She had spiking fevers—as high as 102.2 °F—despite being on antibiotics for more than 24 hours. The erythrocyte sedimentation rate (ESR) was 39 mm/h (0-20 mm/h), and C-reactive protein (CRP) was 71.4 mg/L (0.0-4.9 mg/L). Due to concern for abscess, a neck ultrasound was performed; it showed a chain of enlarged lymph nodes in the right neck (largest, 2.3 × 1.1 × 1.4 cm) and no abscess.
On Day 3, clindamycin was switched to intravenous ampicillin/sulbactam because a nasal swab for methicillin-resistant Staphylococcus aureus was negative. A swab for respiratory viral infections was also negative. The patient then developed notable facial swelling, bilateral bulbar conjunctival injection with limbic sparing, and swelling of her hands and feet.
THE DIAGNOSIS
By the end of Day 3, the patient’s lab studies demonstrated microcytic anemia and low albumin (2.5 g/dL), but no transaminitis, thrombocytosis, or sterile pyuria. An electrocardiogram was unremarkable. A pediatric echocardiogram revealed hyperemic coronaries, indicating inflammation. The coronary arteries were measured in the upper limits of normal, and the patient’s Z-scores were < 2.5. (A Z-score < 2 indicates no involvement, 2 to < 2.5 indicates dilation, and ≥ 2.5 indicates aneurysm abnormality.1) An ultrasound of the right upper quadrant revealed an enlarged/elongated gallbladder. The patient therefore met clinical criteria for Kawasaki disease.
DISCUSSION
Kawasaki disease is a self-limited vasculitis of childhood and the leading cause of acquired heart disease in children in developed countries.1 The annual incidence of Kawasaki disease in North America is about 25 cases per 100,000 children < 5 years of age.1 In the United States, incidence is highest in Asian and Pacific Islander populations (30 per 100,000) and is particularly high among those of Japanese ancestry (~200 per 100,000).2 Disease prevalence is also noteworthy in Non-Hispanic African American (17 per 100,000) and Hispanic (16 per 100,000) populations.2
Diagnosis of Kawasaki disease requires presence of fever lasting at least 5 days and at least 4 of the following: bilateral bulbar conjunctival injection, oral mucous membrane changes (erythematous or cracked lips, erythematous pharynx, strawberry tongue), peripheral extremity changes (erythema of palms or soles, edema of hands or feet, and/or periungual desquamation), diffuse maculopapular rash, and cervical lymphadenopathy (≥ 1.5 cm, often unilateral). If ≥ 4 criteria are met, Kawasaki disease can be diagnosed on the fourth day of illness.1
Continue to: Laboratory findings suggesting...
Laboratory findings suggesting Kawasaki disease include a WBC count ≥ 15,000/mcL, normocytic, normochromic anemia, platelets ≥ 450,000/mcL after 7 days of illness, sterile pyuria (≥ 10 WBCs/high-power field), serum alanine aminotransferase level > 50 U/L, and serum albumin ≤ 3 g/dL.
Cardiac abnormalities are not included in the diagnostic criteria for Kawasaki disease but provide evidence in cases of incomplete Kawasaki disease if ≥ 4 criteria are not met and there is strong clinical suspicion.1 Incomplete Kawasaki disease should be considered in a patient with a CRP level ≥ 3 mg/dL and/or ESR ≥ 40 mm/h, ≥ 3 supplemental laboratory criteria, or a positive echocardiogram.1
Ultrasound imaging may reveal cervical lymph nodes resembling a “cluster of grapes.”3 The case patient’s imaging showed a “chain of enlarged lymph nodes.” She likely had gallbladder “hydrops” due to its increased longitudinal and horizontal diameter and lack of other anatomic changes.4
Prompt treatment is essential
Treatment for complete and incomplete Kawasaki disease is a single high dose of intravenous immunoglobulin (IVIG) along with aspirin. Patients meeting criteria should be treated as soon as the diagnosis is established.5 A single high dose of IVIG (2 g/kg), administered over 10 to 12 hours, should be initiated within 5 to 10 days of disease onset. Administering IVIG in the acute phase of Kawasaki disease reduces the prevalence of coronary artery abnormalities.6 Corticosteroids may be used as adjunctive therapy for patients with high risk of IVIG resistance.1,7-9
Our patient was not deemed to be at high risk for IVIG resistance (Non-Japanese patient, age at fever onset > 6 months, absence of coronary artery aneurysm9) and was administered IVIG on Day 4. She was also given moderate-dose aspirin, then later transitioned to low-dose aspirin. The patient’s fevers improved, she was less irritable, and she had periods of playfulness. Physical exam then showed erythematous and cracked lips with peeling skin.
Continue to: The patient was discharged...
The patient was discharged home on Day 8, after her fever resolved, with instructions to continue low-dose aspirin and to obtain a repeat echocardiogram, gallbladder ultrasound, and lab work in 2 weeks. At her follow-up appointment, periungual desquamation was noted, and ultrasound showed continued enlarged/elongated gallbladder. A repeat echocardiogram was not available. Overall, the patient recovered from Kawasaki disease after therapeutic intervention.
THE TAKEAWAY
Kawasaki disease can be relatively rare in North American populations, but it is important for physicians to be able to recognize and treat it. Untreated children have a 25% chance of developing coronary artery aneurysms.1,10,11 Early treatment with IVIG can decrease risk to 5%, resulting in an excellent medium- to long-term prognosis for patients.10 Thorough physical examination and an appropriate degree of clinical suspicion was key in this case of Kawasaki disease.
Taisha Doo, MD, 1401 Madison Street, Suite #100, Seattle, WA 98104; [email protected]
1. McCrindle BW, Rowley AH, Newburger JW, et al. Diagnosis, treatment, and long-term management of Kawasaki disease: a scientific statement for health professionals from the American Heart Association. Circulation. 2017;135:e927-e999. doi: 10.1161/CIR.0000000000000484
2. Holman RC, Belay ED, Christensen KY, et al. Hospitalizations for Kawasaki syndrome among children in the United States, 1997-2007. Pediatr Infect Dis. 2010;29:483-488. doi: 10.1097/INF.0b013e3181cf8705
3. Tashiro N, Matsubara T, Uchida M, et al. Ultrasonographic evaluation of cervical lymph nodes in Kawasaki disease. Pediatrics. 2002;109:e77. doi: 10.1542/peds.109.5.e77
4. Chen CJ, Huang FC, Taio MM, et al. Sonographic gallbladder abnormality is associated with intravenous immunoglobulin resistance in Kawasaki disease. Scientific World J. 2012;2012:485758. doi: 10.1100/2012/485758
5. Dominguez SR, Anderson MS, El-Adawy M, et al. Preventing coronary artery abnormalities: a need for earlier diagnosis and treatment of Kawasaki disease. Pediatr Infect Dis J. 2012;31:1217-1220. doi: 10.1097/INF.0b013e318266bcf9
6. Kuo HC. Preventing coronary artery lesions in Kawasaki disease. Biomed J. 2017;40:141-146. doi: 10.1016/j.bj.2017.04.002
7. Chen S, Dong Y, Yin Y, et al. Intravenous immunoglobulin plus corticosteroid to prevent coronary artery abnormalities in Kawasaki disease: a meta-analysis. Heart. 2013;99:76-82. doi: 10.1136/heartjnl-2012-302126
8. Chantasiriwan N, Silvilairat S, Makonkawkeyoon K, et al. Predictors of intravenous immunoglobulin resistance and coronary artery aneurysm in patients with Kawasaki disease, Paediatr Int Child Health. 2018;38:209-212. doi: 10.1080/20469047.2018.1471381
9. Son MBF, Gauvreau K, Tremoulet AH, et al. Risk model development and validation for prediction of coronary artery aneurysms in Kawasaki disease in a North American population. J Am Heart Assoc. 2019;8:e011319. doi: 10.1161/JAHA.118.011319
10. de La Harpe M, di Bernardo S, Hofer M, et al. Thirty years of Kawasaki disease: a single-center study at the University Hospital of Lausanne. Front Pediatr. 2019;7:11. doi: 10.3389/fped.2019.00011
11. Newburger JW, Takahashi M, Gerber MA, et al. Diagnosis, treatment, and long-term management of Kawasaki disease: a statement for health professionals from the Committee on Rheumatic Fever, Endocarditis, and Kawasaki Disease, Council on Cardiovascular Disease in the Young, American Heart Association. Circulation. 2004;110:2747-2771. doi: 10.1161/01.CIR.0000145143.19711.78
THE CASE
A previously healthy 3-year-old girl presented to the emergency department with 4 days of fever and 2 days of right-side neck pain. The maximum temperature at home was 103 °F. The patient was irritable and vomited once. There were no other apparent or reported symptoms.
The neck exam was notable for nonfluctuant, swollen, and tender lymph nodes on the right side. Her sclera and conjunctiva were clear, and her oropharynx was unremarkable. Lab work revealed leukocytosis, with a white blood cell (WBC) count of 15.5 × 103/µL (normal range, 4.0-10.0 × 103/µL). She was given one 20 cc/kg normal saline bolus, started on intravenous clindamycin for presumed cervical lymphadenitis, and admitted to the hospital.
On Day 2, the patient developed a fine maculopapular rash on her chest, abdomen, and back. She had spiking fevers—as high as 102.2 °F—despite being on antibiotics for more than 24 hours. The erythrocyte sedimentation rate (ESR) was 39 mm/h (0-20 mm/h), and C-reactive protein (CRP) was 71.4 mg/L (0.0-4.9 mg/L). Due to concern for abscess, a neck ultrasound was performed; it showed a chain of enlarged lymph nodes in the right neck (largest, 2.3 × 1.1 × 1.4 cm) and no abscess.
On Day 3, clindamycin was switched to intravenous ampicillin/sulbactam because a nasal swab for methicillin-resistant Staphylococcus aureus was negative. A swab for respiratory viral infections was also negative. The patient then developed notable facial swelling, bilateral bulbar conjunctival injection with limbic sparing, and swelling of her hands and feet.
THE DIAGNOSIS
By the end of Day 3, the patient’s lab studies demonstrated microcytic anemia and low albumin (2.5 g/dL), but no transaminitis, thrombocytosis, or sterile pyuria. An electrocardiogram was unremarkable. A pediatric echocardiogram revealed hyperemic coronaries, indicating inflammation. The coronary arteries were measured in the upper limits of normal, and the patient’s Z-scores were < 2.5. (A Z-score < 2 indicates no involvement, 2 to < 2.5 indicates dilation, and ≥ 2.5 indicates aneurysm abnormality.1) An ultrasound of the right upper quadrant revealed an enlarged/elongated gallbladder. The patient therefore met clinical criteria for Kawasaki disease.
DISCUSSION
Kawasaki disease is a self-limited vasculitis of childhood and the leading cause of acquired heart disease in children in developed countries.1 The annual incidence of Kawasaki disease in North America is about 25 cases per 100,000 children < 5 years of age.1 In the United States, incidence is highest in Asian and Pacific Islander populations (30 per 100,000) and is particularly high among those of Japanese ancestry (~200 per 100,000).2 Disease prevalence is also noteworthy in Non-Hispanic African American (17 per 100,000) and Hispanic (16 per 100,000) populations.2
Diagnosis of Kawasaki disease requires presence of fever lasting at least 5 days and at least 4 of the following: bilateral bulbar conjunctival injection, oral mucous membrane changes (erythematous or cracked lips, erythematous pharynx, strawberry tongue), peripheral extremity changes (erythema of palms or soles, edema of hands or feet, and/or periungual desquamation), diffuse maculopapular rash, and cervical lymphadenopathy (≥ 1.5 cm, often unilateral). If ≥ 4 criteria are met, Kawasaki disease can be diagnosed on the fourth day of illness.1
Continue to: Laboratory findings suggesting...
Laboratory findings suggesting Kawasaki disease include a WBC count ≥ 15,000/mcL, normocytic, normochromic anemia, platelets ≥ 450,000/mcL after 7 days of illness, sterile pyuria (≥ 10 WBCs/high-power field), serum alanine aminotransferase level > 50 U/L, and serum albumin ≤ 3 g/dL.
Cardiac abnormalities are not included in the diagnostic criteria for Kawasaki disease but provide evidence in cases of incomplete Kawasaki disease if ≥ 4 criteria are not met and there is strong clinical suspicion.1 Incomplete Kawasaki disease should be considered in a patient with a CRP level ≥ 3 mg/dL and/or ESR ≥ 40 mm/h, ≥ 3 supplemental laboratory criteria, or a positive echocardiogram.1
Ultrasound imaging may reveal cervical lymph nodes resembling a “cluster of grapes.”3 The case patient’s imaging showed a “chain of enlarged lymph nodes.” She likely had gallbladder “hydrops” due to its increased longitudinal and horizontal diameter and lack of other anatomic changes.4
Prompt treatment is essential
Treatment for complete and incomplete Kawasaki disease is a single high dose of intravenous immunoglobulin (IVIG) along with aspirin. Patients meeting criteria should be treated as soon as the diagnosis is established.5 A single high dose of IVIG (2 g/kg), administered over 10 to 12 hours, should be initiated within 5 to 10 days of disease onset. Administering IVIG in the acute phase of Kawasaki disease reduces the prevalence of coronary artery abnormalities.6 Corticosteroids may be used as adjunctive therapy for patients with high risk of IVIG resistance.1,7-9
Our patient was not deemed to be at high risk for IVIG resistance (Non-Japanese patient, age at fever onset > 6 months, absence of coronary artery aneurysm9) and was administered IVIG on Day 4. She was also given moderate-dose aspirin, then later transitioned to low-dose aspirin. The patient’s fevers improved, she was less irritable, and she had periods of playfulness. Physical exam then showed erythematous and cracked lips with peeling skin.
Continue to: The patient was discharged...
The patient was discharged home on Day 8, after her fever resolved, with instructions to continue low-dose aspirin and to obtain a repeat echocardiogram, gallbladder ultrasound, and lab work in 2 weeks. At her follow-up appointment, periungual desquamation was noted, and ultrasound showed continued enlarged/elongated gallbladder. A repeat echocardiogram was not available. Overall, the patient recovered from Kawasaki disease after therapeutic intervention.
THE TAKEAWAY
Kawasaki disease can be relatively rare in North American populations, but it is important for physicians to be able to recognize and treat it. Untreated children have a 25% chance of developing coronary artery aneurysms.1,10,11 Early treatment with IVIG can decrease risk to 5%, resulting in an excellent medium- to long-term prognosis for patients.10 Thorough physical examination and an appropriate degree of clinical suspicion was key in this case of Kawasaki disease.
Taisha Doo, MD, 1401 Madison Street, Suite #100, Seattle, WA 98104; [email protected]
THE CASE
A previously healthy 3-year-old girl presented to the emergency department with 4 days of fever and 2 days of right-side neck pain. The maximum temperature at home was 103 °F. The patient was irritable and vomited once. There were no other apparent or reported symptoms.
The neck exam was notable for nonfluctuant, swollen, and tender lymph nodes on the right side. Her sclera and conjunctiva were clear, and her oropharynx was unremarkable. Lab work revealed leukocytosis, with a white blood cell (WBC) count of 15.5 × 103/µL (normal range, 4.0-10.0 × 103/µL). She was given one 20 cc/kg normal saline bolus, started on intravenous clindamycin for presumed cervical lymphadenitis, and admitted to the hospital.
On Day 2, the patient developed a fine maculopapular rash on her chest, abdomen, and back. She had spiking fevers—as high as 102.2 °F—despite being on antibiotics for more than 24 hours. The erythrocyte sedimentation rate (ESR) was 39 mm/h (0-20 mm/h), and C-reactive protein (CRP) was 71.4 mg/L (0.0-4.9 mg/L). Due to concern for abscess, a neck ultrasound was performed; it showed a chain of enlarged lymph nodes in the right neck (largest, 2.3 × 1.1 × 1.4 cm) and no abscess.
On Day 3, clindamycin was switched to intravenous ampicillin/sulbactam because a nasal swab for methicillin-resistant Staphylococcus aureus was negative. A swab for respiratory viral infections was also negative. The patient then developed notable facial swelling, bilateral bulbar conjunctival injection with limbic sparing, and swelling of her hands and feet.
THE DIAGNOSIS
By the end of Day 3, the patient’s lab studies demonstrated microcytic anemia and low albumin (2.5 g/dL), but no transaminitis, thrombocytosis, or sterile pyuria. An electrocardiogram was unremarkable. A pediatric echocardiogram revealed hyperemic coronaries, indicating inflammation. The coronary arteries were measured in the upper limits of normal, and the patient’s Z-scores were < 2.5. (A Z-score < 2 indicates no involvement, 2 to < 2.5 indicates dilation, and ≥ 2.5 indicates aneurysm abnormality.1) An ultrasound of the right upper quadrant revealed an enlarged/elongated gallbladder. The patient therefore met clinical criteria for Kawasaki disease.
DISCUSSION
Kawasaki disease is a self-limited vasculitis of childhood and the leading cause of acquired heart disease in children in developed countries.1 The annual incidence of Kawasaki disease in North America is about 25 cases per 100,000 children < 5 years of age.1 In the United States, incidence is highest in Asian and Pacific Islander populations (30 per 100,000) and is particularly high among those of Japanese ancestry (~200 per 100,000).2 Disease prevalence is also noteworthy in Non-Hispanic African American (17 per 100,000) and Hispanic (16 per 100,000) populations.2
Diagnosis of Kawasaki disease requires presence of fever lasting at least 5 days and at least 4 of the following: bilateral bulbar conjunctival injection, oral mucous membrane changes (erythematous or cracked lips, erythematous pharynx, strawberry tongue), peripheral extremity changes (erythema of palms or soles, edema of hands or feet, and/or periungual desquamation), diffuse maculopapular rash, and cervical lymphadenopathy (≥ 1.5 cm, often unilateral). If ≥ 4 criteria are met, Kawasaki disease can be diagnosed on the fourth day of illness.1
Continue to: Laboratory findings suggesting...
Laboratory findings suggesting Kawasaki disease include a WBC count ≥ 15,000/mcL, normocytic, normochromic anemia, platelets ≥ 450,000/mcL after 7 days of illness, sterile pyuria (≥ 10 WBCs/high-power field), serum alanine aminotransferase level > 50 U/L, and serum albumin ≤ 3 g/dL.
Cardiac abnormalities are not included in the diagnostic criteria for Kawasaki disease but provide evidence in cases of incomplete Kawasaki disease if ≥ 4 criteria are not met and there is strong clinical suspicion.1 Incomplete Kawasaki disease should be considered in a patient with a CRP level ≥ 3 mg/dL and/or ESR ≥ 40 mm/h, ≥ 3 supplemental laboratory criteria, or a positive echocardiogram.1
Ultrasound imaging may reveal cervical lymph nodes resembling a “cluster of grapes.”3 The case patient’s imaging showed a “chain of enlarged lymph nodes.” She likely had gallbladder “hydrops” due to its increased longitudinal and horizontal diameter and lack of other anatomic changes.4
Prompt treatment is essential
Treatment for complete and incomplete Kawasaki disease is a single high dose of intravenous immunoglobulin (IVIG) along with aspirin. Patients meeting criteria should be treated as soon as the diagnosis is established.5 A single high dose of IVIG (2 g/kg), administered over 10 to 12 hours, should be initiated within 5 to 10 days of disease onset. Administering IVIG in the acute phase of Kawasaki disease reduces the prevalence of coronary artery abnormalities.6 Corticosteroids may be used as adjunctive therapy for patients with high risk of IVIG resistance.1,7-9
Our patient was not deemed to be at high risk for IVIG resistance (Non-Japanese patient, age at fever onset > 6 months, absence of coronary artery aneurysm9) and was administered IVIG on Day 4. She was also given moderate-dose aspirin, then later transitioned to low-dose aspirin. The patient’s fevers improved, she was less irritable, and she had periods of playfulness. Physical exam then showed erythematous and cracked lips with peeling skin.
Continue to: The patient was discharged...
The patient was discharged home on Day 8, after her fever resolved, with instructions to continue low-dose aspirin and to obtain a repeat echocardiogram, gallbladder ultrasound, and lab work in 2 weeks. At her follow-up appointment, periungual desquamation was noted, and ultrasound showed continued enlarged/elongated gallbladder. A repeat echocardiogram was not available. Overall, the patient recovered from Kawasaki disease after therapeutic intervention.
THE TAKEAWAY
Kawasaki disease can be relatively rare in North American populations, but it is important for physicians to be able to recognize and treat it. Untreated children have a 25% chance of developing coronary artery aneurysms.1,10,11 Early treatment with IVIG can decrease risk to 5%, resulting in an excellent medium- to long-term prognosis for patients.10 Thorough physical examination and an appropriate degree of clinical suspicion was key in this case of Kawasaki disease.
Taisha Doo, MD, 1401 Madison Street, Suite #100, Seattle, WA 98104; [email protected]
1. McCrindle BW, Rowley AH, Newburger JW, et al. Diagnosis, treatment, and long-term management of Kawasaki disease: a scientific statement for health professionals from the American Heart Association. Circulation. 2017;135:e927-e999. doi: 10.1161/CIR.0000000000000484
2. Holman RC, Belay ED, Christensen KY, et al. Hospitalizations for Kawasaki syndrome among children in the United States, 1997-2007. Pediatr Infect Dis. 2010;29:483-488. doi: 10.1097/INF.0b013e3181cf8705
3. Tashiro N, Matsubara T, Uchida M, et al. Ultrasonographic evaluation of cervical lymph nodes in Kawasaki disease. Pediatrics. 2002;109:e77. doi: 10.1542/peds.109.5.e77
4. Chen CJ, Huang FC, Taio MM, et al. Sonographic gallbladder abnormality is associated with intravenous immunoglobulin resistance in Kawasaki disease. Scientific World J. 2012;2012:485758. doi: 10.1100/2012/485758
5. Dominguez SR, Anderson MS, El-Adawy M, et al. Preventing coronary artery abnormalities: a need for earlier diagnosis and treatment of Kawasaki disease. Pediatr Infect Dis J. 2012;31:1217-1220. doi: 10.1097/INF.0b013e318266bcf9
6. Kuo HC. Preventing coronary artery lesions in Kawasaki disease. Biomed J. 2017;40:141-146. doi: 10.1016/j.bj.2017.04.002
7. Chen S, Dong Y, Yin Y, et al. Intravenous immunoglobulin plus corticosteroid to prevent coronary artery abnormalities in Kawasaki disease: a meta-analysis. Heart. 2013;99:76-82. doi: 10.1136/heartjnl-2012-302126
8. Chantasiriwan N, Silvilairat S, Makonkawkeyoon K, et al. Predictors of intravenous immunoglobulin resistance and coronary artery aneurysm in patients with Kawasaki disease, Paediatr Int Child Health. 2018;38:209-212. doi: 10.1080/20469047.2018.1471381
9. Son MBF, Gauvreau K, Tremoulet AH, et al. Risk model development and validation for prediction of coronary artery aneurysms in Kawasaki disease in a North American population. J Am Heart Assoc. 2019;8:e011319. doi: 10.1161/JAHA.118.011319
10. de La Harpe M, di Bernardo S, Hofer M, et al. Thirty years of Kawasaki disease: a single-center study at the University Hospital of Lausanne. Front Pediatr. 2019;7:11. doi: 10.3389/fped.2019.00011
11. Newburger JW, Takahashi M, Gerber MA, et al. Diagnosis, treatment, and long-term management of Kawasaki disease: a statement for health professionals from the Committee on Rheumatic Fever, Endocarditis, and Kawasaki Disease, Council on Cardiovascular Disease in the Young, American Heart Association. Circulation. 2004;110:2747-2771. doi: 10.1161/01.CIR.0000145143.19711.78
1. McCrindle BW, Rowley AH, Newburger JW, et al. Diagnosis, treatment, and long-term management of Kawasaki disease: a scientific statement for health professionals from the American Heart Association. Circulation. 2017;135:e927-e999. doi: 10.1161/CIR.0000000000000484
2. Holman RC, Belay ED, Christensen KY, et al. Hospitalizations for Kawasaki syndrome among children in the United States, 1997-2007. Pediatr Infect Dis. 2010;29:483-488. doi: 10.1097/INF.0b013e3181cf8705
3. Tashiro N, Matsubara T, Uchida M, et al. Ultrasonographic evaluation of cervical lymph nodes in Kawasaki disease. Pediatrics. 2002;109:e77. doi: 10.1542/peds.109.5.e77
4. Chen CJ, Huang FC, Taio MM, et al. Sonographic gallbladder abnormality is associated with intravenous immunoglobulin resistance in Kawasaki disease. Scientific World J. 2012;2012:485758. doi: 10.1100/2012/485758
5. Dominguez SR, Anderson MS, El-Adawy M, et al. Preventing coronary artery abnormalities: a need for earlier diagnosis and treatment of Kawasaki disease. Pediatr Infect Dis J. 2012;31:1217-1220. doi: 10.1097/INF.0b013e318266bcf9
6. Kuo HC. Preventing coronary artery lesions in Kawasaki disease. Biomed J. 2017;40:141-146. doi: 10.1016/j.bj.2017.04.002
7. Chen S, Dong Y, Yin Y, et al. Intravenous immunoglobulin plus corticosteroid to prevent coronary artery abnormalities in Kawasaki disease: a meta-analysis. Heart. 2013;99:76-82. doi: 10.1136/heartjnl-2012-302126
8. Chantasiriwan N, Silvilairat S, Makonkawkeyoon K, et al. Predictors of intravenous immunoglobulin resistance and coronary artery aneurysm in patients with Kawasaki disease, Paediatr Int Child Health. 2018;38:209-212. doi: 10.1080/20469047.2018.1471381
9. Son MBF, Gauvreau K, Tremoulet AH, et al. Risk model development and validation for prediction of coronary artery aneurysms in Kawasaki disease in a North American population. J Am Heart Assoc. 2019;8:e011319. doi: 10.1161/JAHA.118.011319
10. de La Harpe M, di Bernardo S, Hofer M, et al. Thirty years of Kawasaki disease: a single-center study at the University Hospital of Lausanne. Front Pediatr. 2019;7:11. doi: 10.3389/fped.2019.00011
11. Newburger JW, Takahashi M, Gerber MA, et al. Diagnosis, treatment, and long-term management of Kawasaki disease: a statement for health professionals from the Committee on Rheumatic Fever, Endocarditis, and Kawasaki Disease, Council on Cardiovascular Disease in the Young, American Heart Association. Circulation. 2004;110:2747-2771. doi: 10.1161/01.CIR.0000145143.19711.78
Alcohol abstinence reduces A-fib burden in drinkers
ILLUSTRATIVE CASE
A 61-year-old man with hypertension and paroxysmal AF presents to your office shortly after experiencing his third episode of AF in the past 6 months. He describes these episodes, which last for several days, as “just awful,” noting that when he experiences AF, he has fatigue, palpitations, and shortness of breath and “can’t stop paying attention to my heart.” The patient, who has a body mass index of 32, consumes more than 15 alcoholic drinks per week. What can you recommend to him that will decrease his likelihood of experiencing more episodes of AF?
AF is the most common sustained cardiac arrhythmia. It is associated with significant morbidity and mortality. Known risk factors include obesity, physical inactivity, sleep apnea, diabetes, and hypertension.2
According to the Centers for Disease Control and Prevention, an estimated 12.1 million people in the United States will have AF by 2030. In 2018, AF was mentioned on more than 183,000 death certificates and was the underlying cause of more than 26,000 of those deaths.3 AF is the primary diagnosis in 450,000 hospitalizations annually,4 and the death rate from AF as the primary or contributing cause of death has been rising for more than 2 decades.3
More than 50% of Americans report alcohol consumption within the past month.5 Although alcohol use is associated with new and recurrent AF, only limited prospective data show a clear and causal association between abstaining from alcohol and decreasing AF recurrence.
STUDY SUMMARY
Reduction in AF recurrence and total AF burden following alcohol abstinence
This multicenter, prospective, open-label, randomized controlled trial (N = 140) from 6 sites in Australia evaluated the impact of alcohol abstinence on both the recurrence of AF and the amount of time in AF. Study participants were ages 18 to 85 years, consumed 10 or more standard alcohol-containing drinks per week, had paroxysmal or persistent AF, and were in sinus rhythm at the time of enrollment, regardless of antiarrhythmic therapy. Exclusion criteria included alcohol dependence or abuse, severe left ventricular systolic dysfunction (ejection fraction < 35%), clinically significant noncardiac illness, and/or coexisting psychiatric disorder.1
After a 4-week run-in period, patients were randomized to either an abstinence or a control group in a 1:1 fashion. Patients enrolled in the abstinence group were encouraged to abstain from alcohol consumption for 6 months and were provided with written and oral instructions to assist with abstaining. Control group patients continued their same level of alcohol consumption. Comprehensive rhythm monitoring occurred for all patients after randomization.
Alcohol consumption was reported by both groups using a weekly alcohol diary, supplemented with a visual guide showing pictures of standard alcohol drinks. For the abstinence group, random urine testing for ethyl glucuronide (an alcohol metabolite) was possible if no alcohol intake was reported. Primary outcomes during the 6-month study included recurrence of AF and total AF burden (percentage of time in AF).
Continue to: Secondary outcomes included hospitalizations...
Secondary outcomes included hospitalizations for AF, AF symptom severity, and change in weight. Blood pressure, quality-of-life, and depression scores were missing for > 35% of patients.1
Patients were randomized evenly to the control and abstinence groups. The typical patient was an overweight male in his early 60s with paroxysmal AF, who was taking an antiarrhythmic agent. Patients in the abstinence group decreased their alcohol consumption from 16.8 to 2.1 drinks per week (87.5% reduction; mean difference = –14.7; 95% CI, –12.7 to –16.7). Patients in the control group reduced their intake from 16.4 to 13.2 drinks per week (19.5% reduction; mean difference = –3.2; 95% CI, –1.9 to –4.4).1
AF recurred in 53% vs 73% of the abstinence and control groups, respectively, with a longer period before recurrence in the abstinence group than in the control group (hazard ratio = 0.55; 95% CI, 0.36-0.84; P = .005; number needed to treat = 5). The AF burden was also lower in the abstinence group (0.5%; interquartile range [IQR] = 0.0-3.0) than in the control group (1.2%; IQR = 0.0-10.3; P = .01). The abstinence group had a lower percentage of AF hospitalizations compared with the control group (9% vs 20%), and fewer patients reporting moderate or severe AF symptoms (10% vs 32%). In addition, the abstinence group lost 3.7 kg more weight than did the control group at 6 months.1
WHAT’S NEW
Objective new evidence for effective patient counseling
Alcohol consumption and its association with the onset and recurrence of AF has been documented previously.6 This study was the first to prospectively examine if abstaining from alcohol reduces paroxysmal AF episodes in moderate drinkers.
The study identified clinically meaningful findings among those who abstained from alcohol, including decreased AF recurrence rates, increased time to recurrence, and lower overall AF burden. This provides objective evidence that can be used for motivational interviewing in patients with paroxysmal AF who may be receptive to reducing or abstaining from alcohol consumption.
Continue to: CAVEATS
CAVEATS
The narrow study population may not be widely applicable
The study population was predominantly male, in their seventh decade of life (mean age, 61), and living in Australia. Rates of AF and symptomatology differ by gender and age, making this information challenging to apply to women or older populations. The study excluded patients with alcohol dependence or abuse, left ventricular systolic dysfunction (ejection fraction < 35%), coexisting psychiatric disorders, and clinically significant noncardiac illnesses, limiting the study’s generalizability to these patient populations. Overall, AF recurrence was low in both groups despite the intervention, and the study did not evaluate the efficacy of the counseling method for abstinence.
Since publication of this article, a prospective cohort study of approximately 3800 Swiss patients with AF evaluated the effect of alcohol consumption on the rate of stroke and embolic events. That study did not find statistically significant correlations between patients who drank no alcohol per day, > 0 to < 1, 1 to < 2, or ≥ 2 drinks per day and their rate of stroke.7 However, this study did not specifically evaluate the rate of AF recurrence or time spent in AF among the cohort, which is clinically meaningful for patient morbidity.1
CHALLENGES TO IMPLEMENTATION
Patient willingness to cut alcohol consumption may be limited
The largest challenge to implementation of this intervention is most likely the willingness of patients to cut their alcohol consumption. In this study population, 697 patients were screened for enrollment and met inclusion criteria; however, 491 patients (70.4%) were not willing to consider abstinence from alcohol, and after the run-in phase, another 17 declined randomization. Many primary care physicians would likely agree that while it is easy to encourage patients to drink less, patient adherence to these recommendations, particularly abstaining, is likely to be limited.
ACKNOWLEDGEMENT
The PURLs Surveillance System was supported in part by Grant Number UL1RR024999 from the National Center for Research Resources, a Clinical Translational Science Award to the University of Chicago. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Center for Research Resources or the National Institutes of Health.
1. Voskoboinik A, Kalman JM, De Silva A, et al. Alcohol abstinence in drinkers with atrial fibrillation. N Engl J Med. 2020;382:20-28. doi: 10.1056/NEJMoa1817591
2. Chung MK, Eckhardt LL, Chen LY, et al. Lifestyle and risk factor modification for reduction of atrial fibrillation: a scientific statement from the American Heart Association. Circulation. 2020;141:e750-e772. doi: 10.1161/CIR.0000000000000748
3. Atrial fibrillation. Centers for Disease Control and Prevention. Last reviewed September 27, 2021. Accessed February 9, 2022. www.cdc.gov/heartdisease/atrial_fibrillation.htm
4. Benjamin EJ, Muntner P, Alonso A, et al. Heart disease and stroke statistics—2019 update: a report from the American Heart Association. Circulation. 2019;139:e56-e528. doi: 10.1161/CIR.0000000000000659
5. Alcohol facts and statistics. National Institute on Alcohol Abuse and Alcoholism. Updated June 2021. Accessed February 9, 2022. www.niaaa.nih.gov/publications/brochures-and-fact-sheets/alcohol-facts-and-statistics
6. Kodama S, Saito K, Tanaka S, et al. Alcohol consumption and risk of atrial fibrillation: a meta-analysis. J Am Coll Cardiol. 2011;57:427-436. doi: 10.1016/j.jacc.2010.08.641
7. Reddiess P, Aeschbacher S, Meyre P, et al. Alcohol consumption and risk of cardiovascular outcomes and bleeding in patients with established atrial fibrillation. CMAJ. 2021;193:E117-E123. doi: 10.1503/cmaj.200778
ILLUSTRATIVE CASE
A 61-year-old man with hypertension and paroxysmal AF presents to your office shortly after experiencing his third episode of AF in the past 6 months. He describes these episodes, which last for several days, as “just awful,” noting that when he experiences AF, he has fatigue, palpitations, and shortness of breath and “can’t stop paying attention to my heart.” The patient, who has a body mass index of 32, consumes more than 15 alcoholic drinks per week. What can you recommend to him that will decrease his likelihood of experiencing more episodes of AF?
AF is the most common sustained cardiac arrhythmia. It is associated with significant morbidity and mortality. Known risk factors include obesity, physical inactivity, sleep apnea, diabetes, and hypertension.2
According to the Centers for Disease Control and Prevention, an estimated 12.1 million people in the United States will have AF by 2030. In 2018, AF was mentioned on more than 183,000 death certificates and was the underlying cause of more than 26,000 of those deaths.3 AF is the primary diagnosis in 450,000 hospitalizations annually,4 and the death rate from AF as the primary or contributing cause of death has been rising for more than 2 decades.3
More than 50% of Americans report alcohol consumption within the past month.5 Although alcohol use is associated with new and recurrent AF, only limited prospective data show a clear and causal association between abstaining from alcohol and decreasing AF recurrence.
STUDY SUMMARY
Reduction in AF recurrence and total AF burden following alcohol abstinence
This multicenter, prospective, open-label, randomized controlled trial (N = 140) from 6 sites in Australia evaluated the impact of alcohol abstinence on both the recurrence of AF and the amount of time in AF. Study participants were ages 18 to 85 years, consumed 10 or more standard alcohol-containing drinks per week, had paroxysmal or persistent AF, and were in sinus rhythm at the time of enrollment, regardless of antiarrhythmic therapy. Exclusion criteria included alcohol dependence or abuse, severe left ventricular systolic dysfunction (ejection fraction < 35%), clinically significant noncardiac illness, and/or coexisting psychiatric disorder.1
After a 4-week run-in period, patients were randomized to either an abstinence or a control group in a 1:1 fashion. Patients enrolled in the abstinence group were encouraged to abstain from alcohol consumption for 6 months and were provided with written and oral instructions to assist with abstaining. Control group patients continued their same level of alcohol consumption. Comprehensive rhythm monitoring occurred for all patients after randomization.
Alcohol consumption was reported by both groups using a weekly alcohol diary, supplemented with a visual guide showing pictures of standard alcohol drinks. For the abstinence group, random urine testing for ethyl glucuronide (an alcohol metabolite) was possible if no alcohol intake was reported. Primary outcomes during the 6-month study included recurrence of AF and total AF burden (percentage of time in AF).
Continue to: Secondary outcomes included hospitalizations...
Secondary outcomes included hospitalizations for AF, AF symptom severity, and change in weight. Blood pressure, quality-of-life, and depression scores were missing for > 35% of patients.1
Patients were randomized evenly to the control and abstinence groups. The typical patient was an overweight male in his early 60s with paroxysmal AF, who was taking an antiarrhythmic agent. Patients in the abstinence group decreased their alcohol consumption from 16.8 to 2.1 drinks per week (87.5% reduction; mean difference = –14.7; 95% CI, –12.7 to –16.7). Patients in the control group reduced their intake from 16.4 to 13.2 drinks per week (19.5% reduction; mean difference = –3.2; 95% CI, –1.9 to –4.4).1
AF recurred in 53% vs 73% of the abstinence and control groups, respectively, with a longer period before recurrence in the abstinence group than in the control group (hazard ratio = 0.55; 95% CI, 0.36-0.84; P = .005; number needed to treat = 5). The AF burden was also lower in the abstinence group (0.5%; interquartile range [IQR] = 0.0-3.0) than in the control group (1.2%; IQR = 0.0-10.3; P = .01). The abstinence group had a lower percentage of AF hospitalizations compared with the control group (9% vs 20%), and fewer patients reporting moderate or severe AF symptoms (10% vs 32%). In addition, the abstinence group lost 3.7 kg more weight than did the control group at 6 months.1
WHAT’S NEW
Objective new evidence for effective patient counseling
Alcohol consumption and its association with the onset and recurrence of AF has been documented previously.6 This study was the first to prospectively examine if abstaining from alcohol reduces paroxysmal AF episodes in moderate drinkers.
The study identified clinically meaningful findings among those who abstained from alcohol, including decreased AF recurrence rates, increased time to recurrence, and lower overall AF burden. This provides objective evidence that can be used for motivational interviewing in patients with paroxysmal AF who may be receptive to reducing or abstaining from alcohol consumption.
Continue to: CAVEATS
CAVEATS
The narrow study population may not be widely applicable
The study population was predominantly male, in their seventh decade of life (mean age, 61), and living in Australia. Rates of AF and symptomatology differ by gender and age, making this information challenging to apply to women or older populations. The study excluded patients with alcohol dependence or abuse, left ventricular systolic dysfunction (ejection fraction < 35%), coexisting psychiatric disorders, and clinically significant noncardiac illnesses, limiting the study’s generalizability to these patient populations. Overall, AF recurrence was low in both groups despite the intervention, and the study did not evaluate the efficacy of the counseling method for abstinence.
Since publication of this article, a prospective cohort study of approximately 3800 Swiss patients with AF evaluated the effect of alcohol consumption on the rate of stroke and embolic events. That study did not find statistically significant correlations between patients who drank no alcohol per day, > 0 to < 1, 1 to < 2, or ≥ 2 drinks per day and their rate of stroke.7 However, this study did not specifically evaluate the rate of AF recurrence or time spent in AF among the cohort, which is clinically meaningful for patient morbidity.1
CHALLENGES TO IMPLEMENTATION
Patient willingness to cut alcohol consumption may be limited
The largest challenge to implementation of this intervention is most likely the willingness of patients to cut their alcohol consumption. In this study population, 697 patients were screened for enrollment and met inclusion criteria; however, 491 patients (70.4%) were not willing to consider abstinence from alcohol, and after the run-in phase, another 17 declined randomization. Many primary care physicians would likely agree that while it is easy to encourage patients to drink less, patient adherence to these recommendations, particularly abstaining, is likely to be limited.
ACKNOWLEDGEMENT
The PURLs Surveillance System was supported in part by Grant Number UL1RR024999 from the National Center for Research Resources, a Clinical Translational Science Award to the University of Chicago. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Center for Research Resources or the National Institutes of Health.
ILLUSTRATIVE CASE
A 61-year-old man with hypertension and paroxysmal AF presents to your office shortly after experiencing his third episode of AF in the past 6 months. He describes these episodes, which last for several days, as “just awful,” noting that when he experiences AF, he has fatigue, palpitations, and shortness of breath and “can’t stop paying attention to my heart.” The patient, who has a body mass index of 32, consumes more than 15 alcoholic drinks per week. What can you recommend to him that will decrease his likelihood of experiencing more episodes of AF?
AF is the most common sustained cardiac arrhythmia. It is associated with significant morbidity and mortality. Known risk factors include obesity, physical inactivity, sleep apnea, diabetes, and hypertension.2
According to the Centers for Disease Control and Prevention, an estimated 12.1 million people in the United States will have AF by 2030. In 2018, AF was mentioned on more than 183,000 death certificates and was the underlying cause of more than 26,000 of those deaths.3 AF is the primary diagnosis in 450,000 hospitalizations annually,4 and the death rate from AF as the primary or contributing cause of death has been rising for more than 2 decades.3
More than 50% of Americans report alcohol consumption within the past month.5 Although alcohol use is associated with new and recurrent AF, only limited prospective data show a clear and causal association between abstaining from alcohol and decreasing AF recurrence.
STUDY SUMMARY
Reduction in AF recurrence and total AF burden following alcohol abstinence
This multicenter, prospective, open-label, randomized controlled trial (N = 140) from 6 sites in Australia evaluated the impact of alcohol abstinence on both the recurrence of AF and the amount of time in AF. Study participants were ages 18 to 85 years, consumed 10 or more standard alcohol-containing drinks per week, had paroxysmal or persistent AF, and were in sinus rhythm at the time of enrollment, regardless of antiarrhythmic therapy. Exclusion criteria included alcohol dependence or abuse, severe left ventricular systolic dysfunction (ejection fraction < 35%), clinically significant noncardiac illness, and/or coexisting psychiatric disorder.1
After a 4-week run-in period, patients were randomized to either an abstinence or a control group in a 1:1 fashion. Patients enrolled in the abstinence group were encouraged to abstain from alcohol consumption for 6 months and were provided with written and oral instructions to assist with abstaining. Control group patients continued their same level of alcohol consumption. Comprehensive rhythm monitoring occurred for all patients after randomization.
Alcohol consumption was reported by both groups using a weekly alcohol diary, supplemented with a visual guide showing pictures of standard alcohol drinks. For the abstinence group, random urine testing for ethyl glucuronide (an alcohol metabolite) was possible if no alcohol intake was reported. Primary outcomes during the 6-month study included recurrence of AF and total AF burden (percentage of time in AF).
Continue to: Secondary outcomes included hospitalizations...
Secondary outcomes included hospitalizations for AF, AF symptom severity, and change in weight. Blood pressure, quality-of-life, and depression scores were missing for > 35% of patients.1
Patients were randomized evenly to the control and abstinence groups. The typical patient was an overweight male in his early 60s with paroxysmal AF, who was taking an antiarrhythmic agent. Patients in the abstinence group decreased their alcohol consumption from 16.8 to 2.1 drinks per week (87.5% reduction; mean difference = –14.7; 95% CI, –12.7 to –16.7). Patients in the control group reduced their intake from 16.4 to 13.2 drinks per week (19.5% reduction; mean difference = –3.2; 95% CI, –1.9 to –4.4).1
AF recurred in 53% vs 73% of the abstinence and control groups, respectively, with a longer period before recurrence in the abstinence group than in the control group (hazard ratio = 0.55; 95% CI, 0.36-0.84; P = .005; number needed to treat = 5). The AF burden was also lower in the abstinence group (0.5%; interquartile range [IQR] = 0.0-3.0) than in the control group (1.2%; IQR = 0.0-10.3; P = .01). The abstinence group had a lower percentage of AF hospitalizations compared with the control group (9% vs 20%), and fewer patients reporting moderate or severe AF symptoms (10% vs 32%). In addition, the abstinence group lost 3.7 kg more weight than did the control group at 6 months.1
WHAT’S NEW
Objective new evidence for effective patient counseling
Alcohol consumption and its association with the onset and recurrence of AF has been documented previously.6 This study was the first to prospectively examine if abstaining from alcohol reduces paroxysmal AF episodes in moderate drinkers.
The study identified clinically meaningful findings among those who abstained from alcohol, including decreased AF recurrence rates, increased time to recurrence, and lower overall AF burden. This provides objective evidence that can be used for motivational interviewing in patients with paroxysmal AF who may be receptive to reducing or abstaining from alcohol consumption.
Continue to: CAVEATS
CAVEATS
The narrow study population may not be widely applicable
The study population was predominantly male, in their seventh decade of life (mean age, 61), and living in Australia. Rates of AF and symptomatology differ by gender and age, making this information challenging to apply to women or older populations. The study excluded patients with alcohol dependence or abuse, left ventricular systolic dysfunction (ejection fraction < 35%), coexisting psychiatric disorders, and clinically significant noncardiac illnesses, limiting the study’s generalizability to these patient populations. Overall, AF recurrence was low in both groups despite the intervention, and the study did not evaluate the efficacy of the counseling method for abstinence.
Since publication of this article, a prospective cohort study of approximately 3800 Swiss patients with AF evaluated the effect of alcohol consumption on the rate of stroke and embolic events. That study did not find statistically significant correlations between patients who drank no alcohol per day, > 0 to < 1, 1 to < 2, or ≥ 2 drinks per day and their rate of stroke.7 However, this study did not specifically evaluate the rate of AF recurrence or time spent in AF among the cohort, which is clinically meaningful for patient morbidity.1
CHALLENGES TO IMPLEMENTATION
Patient willingness to cut alcohol consumption may be limited
The largest challenge to implementation of this intervention is most likely the willingness of patients to cut their alcohol consumption. In this study population, 697 patients were screened for enrollment and met inclusion criteria; however, 491 patients (70.4%) were not willing to consider abstinence from alcohol, and after the run-in phase, another 17 declined randomization. Many primary care physicians would likely agree that while it is easy to encourage patients to drink less, patient adherence to these recommendations, particularly abstaining, is likely to be limited.
ACKNOWLEDGEMENT
The PURLs Surveillance System was supported in part by Grant Number UL1RR024999 from the National Center for Research Resources, a Clinical Translational Science Award to the University of Chicago. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Center for Research Resources or the National Institutes of Health.
1. Voskoboinik A, Kalman JM, De Silva A, et al. Alcohol abstinence in drinkers with atrial fibrillation. N Engl J Med. 2020;382:20-28. doi: 10.1056/NEJMoa1817591
2. Chung MK, Eckhardt LL, Chen LY, et al. Lifestyle and risk factor modification for reduction of atrial fibrillation: a scientific statement from the American Heart Association. Circulation. 2020;141:e750-e772. doi: 10.1161/CIR.0000000000000748
3. Atrial fibrillation. Centers for Disease Control and Prevention. Last reviewed September 27, 2021. Accessed February 9, 2022. www.cdc.gov/heartdisease/atrial_fibrillation.htm
4. Benjamin EJ, Muntner P, Alonso A, et al. Heart disease and stroke statistics—2019 update: a report from the American Heart Association. Circulation. 2019;139:e56-e528. doi: 10.1161/CIR.0000000000000659
5. Alcohol facts and statistics. National Institute on Alcohol Abuse and Alcoholism. Updated June 2021. Accessed February 9, 2022. www.niaaa.nih.gov/publications/brochures-and-fact-sheets/alcohol-facts-and-statistics
6. Kodama S, Saito K, Tanaka S, et al. Alcohol consumption and risk of atrial fibrillation: a meta-analysis. J Am Coll Cardiol. 2011;57:427-436. doi: 10.1016/j.jacc.2010.08.641
7. Reddiess P, Aeschbacher S, Meyre P, et al. Alcohol consumption and risk of cardiovascular outcomes and bleeding in patients with established atrial fibrillation. CMAJ. 2021;193:E117-E123. doi: 10.1503/cmaj.200778
1. Voskoboinik A, Kalman JM, De Silva A, et al. Alcohol abstinence in drinkers with atrial fibrillation. N Engl J Med. 2020;382:20-28. doi: 10.1056/NEJMoa1817591
2. Chung MK, Eckhardt LL, Chen LY, et al. Lifestyle and risk factor modification for reduction of atrial fibrillation: a scientific statement from the American Heart Association. Circulation. 2020;141:e750-e772. doi: 10.1161/CIR.0000000000000748
3. Atrial fibrillation. Centers for Disease Control and Prevention. Last reviewed September 27, 2021. Accessed February 9, 2022. www.cdc.gov/heartdisease/atrial_fibrillation.htm
4. Benjamin EJ, Muntner P, Alonso A, et al. Heart disease and stroke statistics—2019 update: a report from the American Heart Association. Circulation. 2019;139:e56-e528. doi: 10.1161/CIR.0000000000000659
5. Alcohol facts and statistics. National Institute on Alcohol Abuse and Alcoholism. Updated June 2021. Accessed February 9, 2022. www.niaaa.nih.gov/publications/brochures-and-fact-sheets/alcohol-facts-and-statistics
6. Kodama S, Saito K, Tanaka S, et al. Alcohol consumption and risk of atrial fibrillation: a meta-analysis. J Am Coll Cardiol. 2011;57:427-436. doi: 10.1016/j.jacc.2010.08.641
7. Reddiess P, Aeschbacher S, Meyre P, et al. Alcohol consumption and risk of cardiovascular outcomes and bleeding in patients with established atrial fibrillation. CMAJ. 2021;193:E117-E123. doi: 10.1503/cmaj.200778
PRACTICE CHANGER
Counsel patients with paroxysmal or persistent atrial fibrillation (AF) who drink moderately (≥ 10 drinks per week) that they can reduce their time in AF, as well as their overall recurrence of AF, by decreasing their alcohol consumption by half or more.
STRENGTH OF RECOMMENDATION
B: Based on a well-performed randomized controlled trial1
Voskoboinik A, Kalman JM, De Silva A, et al. Alcohol abstinence in drinkers with atrial fibrillation. N Engl J Med. 2020;382:20-28.
Right place, right time: Facilitating end-of-life conversations
As the geriatric population continues to grow and treatment advances blur the lines between improving the length of life vs improving its quality, end-of-life (EOL) conversations are becoming increasingly important. These discussions are a crucial part of the advance care planning (ACP) process, in which patients discuss their treatment preferences and values with their caregiver/surrogate decision maker and health care provider to ultimately improve EOL decision-making and care. 1,2
EOL conversations are most helpful when incorporated in the outpatient setting as part of the patient’s ongoing health care plan or when initiating treatment for a chronic or life-threatening disease. Because family physicians promote general wellness, understand the patient’s health status and medical history, and have an ongoing—and often longstanding—relationship with patients and their families, we are ideally positioned to engage patients in EOL discussions. However, these conversations can be challenging in the outpatient setting, and often clinicians struggle not only to find ways to raise the subject, but also to find the time to have these supportive, meaningful conversations.3
In this article, we will address the importance of having EOL discussions in the outpatient setting, specifically about advance directives (ADs), and the reasons why patients and physicians might avoid these discussions. The role of palliative care in EOL care, along with its benefits and methods for overcoming patient and physician barriers to its successful use, are reviewed. Finally, we examine specific challenges associated with discussing EOL care with patients with decreased mental capacity, such as those with dementia, and provide strategies to successfully facilitate EOL discussions in these populations.
Moving patients toward completion of advance directives
Although many older patients express a desire to document their wishes before EOL situations arise, they may not fully understand the benefits of an AD or how to complete one. 4 Often the family physician is best equipped to address the patient’s concerns and discuss their goals for EOL care, as well as the potential situations that might arise.
Managing an aging population. Projections suggest that primary care physicians will encounter increasing numbers of geriatric patients in the next 2 decades. Thus it is essential for those in primary care to receive proper training during their residency for the care of this group of patients. According to a group of academic educators and geriatricians from internal medicine and family medicine whose goal was to define a set of minimal and essential competencies in the care of older adults, this includes training on how to discuss and document “advance care planning and goals of care with all patients with chronic or complex illness,” as well as how to differentiate among “types of code status, health care proxies, and advanced directives” within the state in which training occurs. 5
Educate patients and ease fears. Patients often avoid EOL conversations or wait for their family physician to start the conversation. They may not understand how ADs can help guide care or they may believe they are “too healthy” to have these conversations at this time. 4 Simply asking about existing ADs or providing forms to patients during an outpatient visit can open the door to more in-depth discussions. Some examples of opening phrases include:
- Do you have a living will or durable power of attorney for health care?
- Have you ever discussed your health care wishes with your loved ones?
- Who would you want to speak for you regarding your health care if you could not speak for yourself? Have you discussed your health care wishes with that person?
By normalizing the conversation as a routine part of comprehensive, patient-centered care, the family physician can allay patient fears, foster open and honest conversations, and encourage ongoing discussions with loved ones as situations arise.6
Continue to: When ADs are executed...
When ADs are executed, patients often fail to have meaningful conversations with their surrogates about specific treatment wishes or EOL scenarios. As a result, the surrogate may not feel prepared to serve as a proxy decision maker or may find the role extremely stressful.7 Physicians should encourage open conversations between patients and their surrogates about potential EOL scenarios when possible. When possible and appropriate, it is also important to encourage the patient to include the surrogate in future outpatient visits so that the surrogate can understand the patient’s health status and potential decisions they may need to make.
Don’t overlook clinician barriers. Family physicians also might avoid AD discussions because they do not understand laws that govern ADs, which vary from state to state. Various online resources for patients and physicians exist that clarify state-specific regulations and provide state-specific forms (TABLE).
Time constraints present another challenge for family physicians. This can be addressed by establishing workflows that include EOL elements. Also, the Centers for Medicare and Medicaid Services (CMS) has provided separate billing codes for AD discussion based on time spent explaining and discussing how to complete forms.8 CPT codes 99497 and 99498 are time-based codes that cover the first 30 minutes and each additional 30 minutes, respectively, of time spent explaining and discussing how to complete standard forms in a face-to-face setting (TABLE).9 CMS also includes discussion of AD documents as an optional element of the annual Medicare wellness visit.8
Improve quality of life for patients with any serious illness
Unlike hospice, which focuses on providing comfort rather than cure in the final months of a patient’s life, palliative care strives to prevent and relieve the patient’s suffering from a serious illness that is not immediately life-threatening. Palliative care focuses on the early identification, careful assessment, and treatment of the physical, psychosocial, and spiritual symptoms associated with a patient’s condition(s).10,11 It has been well established that palliative care has a positive effect on many clinical outcomes including symptom burden, quality of life, satisfaction with care, and survival.12-14 Patients who receive palliative care consultation also tend to perceive a higher quality of care.15
Conversations lead to better outcomes. Palliative care consultation is being increasingly used in the outpatient setting and can be introduced early in a disease process. Doing so provides an additional opportunity for the family physician to introduce an EOL discussion. A comparison of outcomes between patients who had initial inpatient palliative care consultation vs outpatient palliative care referral found that outpatient referral improved quality EOL care and was associated with significantly fewer emergency department visits (68% vs 48%; P < .001) and hospital admissions (86% vs 52%; P < .001), as well as shorter hospital stays in the last 30 days of life (3-11 vs 5-14 days; P = .01).14 Despite these benefits, 60% to 90% of patients with a serious illness report never having discussed EOL care issues with their clinician.16,17
Continue to: Early EOL discussions...
Early EOL discussions have also been shown to have a positive impact on families. In a US study, family members stated that timely EOL care discussions allowed them to make use of hospice and palliative care services sooner and to make the most of their time with the patient.18
Timing and communication are key
Logistically it can be difficult to gather the right people (patient, family, etc) in the right place and at the right time. For physicians, the most often cited barriers include inadequate time to conduct an EOL discussion, 19 a perceived lack of competence in EOL conversations, 1,20 difficulty navigating patient readiness, 21 and a fear of destroying hope due to prognostic uncertainty. 19,20
A prospective, observational study used the Quality of Communication (QOC) questionnaire to assess life-sustaining treatment preferences, ACP, and the quality of EOL care communication in Dutch outpatients with clinically stable but severe chronic obstructive pulmonary disease (n = 105) or congestive heart failure (n = 80). The QOC questionnaire is a validated instrument that asks patients to rate their physician on several communication skills from 0 (“the very worst” or “My doctor didn’t do this”) to 10 (“the very best”). In this study, quality communication was identified by patients as one of the most important skills for physicians to provide adequate EOL care. 22 While QOC ratings were high for general communication skills (median, 8.0 points), quality EOL care communication was rated very low (median, 0.0 points). Researchers say that this was primarily because most EOL topics were not discussed—especially spirituality, prognosis, and what dying might be like. 22 In a secondary analysis that evaluated quality of EOL care communication during 1-year follow-up of patients with advanced chronic organ failure (n = 265) with the QOC questionnaire, patient ratings improved to moderate to good (medians, 6-8 points) when these topics were addressed. 23
Pick a strategy and prepare. As the older population continues to grow, the demands of palliative care management cannot be met by specialists alone and the responsibility of discussing EOL care with patients and their families will increasingly fall to family physicians as well. 24 Several strategies and approaches have evolved to assist family physicians with acquiring the skills to conduct productive EOL discussions. These include widely referenced resources, such as VitalTalk 25 and the ABCDE Plan. 26 VitalTalk teaches skills to help clinicians navigate difficult conversations, 25 and the “ABCDE” method provides a pneumonic for recommendations for how to deliver bad news ( A dvance preparation; B uild a therapeutic environment/relationship; C ommunicate well; D eal with patient and family reactions; E ncourage and validate emotions). 26
Other strategies include familiarizing oneself with the patient’s medical history and present situation (eg, What are the patient’s symptoms? What do other involved clinicians think and recommend? What therapies have been attempted? What are the relevant social and emotional dynamics?); asking the patient who they want present for the EOL conversation; scheduling the conversation for when you can set aside an appropriate amount of time and in a private place where there will be no interruptions; and going into the meeting with your goal in mind, whether it is to deliver bad news, clarify the prognosis, establish goals of care, or communicate the patient’s goals and wishes for the EOL to those in attendance. 27 It can be very helpful to begin the conversation by clarifying what the patient and their family/surrogate understand about the current diagnosis and prognosis. From there, the family physician can present a “headline” that prepares them for the current conversation (eg, “I have your latest test results, and I need to share some serious news”). This can facilitate a more detailed discussion of the patient’s and surrogate’s goals of care. Using these strategies, family physicians can lead a productive EOL discussion that benefits everyone.
Continue to: How to navigate EOL discussions with patients with dementia
How to navigate EOL discussions with patients with dementia
EOL discussions with patients with dementia become even more complex and warrant specific discussion because one must consider the timing of such discussions, 2,28,29 the trajectory of the disease and how that affects the patient’s capacity for EOL conversations, and the critical importance of engaging caregivers/surrogate decision makers in these discussions. 2 ACP provides an opportunity for the physician, patient, and caregiver/surrogate to jointly explore the patient’s values, beliefs, and preferences for care through the EOL as the disease progresses and the patient’s decisional capacity declines.
Ensure meaningful participation with timing. EOL discussions should occur while the patient has the cognitive capacity to actively participate in the planning process. A National Institutes of Health stage I behavioral intervention development trial evaluated a structured psychoeducational intervention, known as SPIRIT (Sharing Patient’s Illness Representation to Increase Trust), that aimed to promote cognitive and emotional preparation for EOL decisions for patients and their surrogates.28 It was found to be effective in patients, including those with end-stage renal disease and advanced heart failure, and their surrogates.28 Preliminary results from the trial confirmed that people with mild-to-moderate dementia (recent Montreal Cognitive Assessment score ≥ 13) are able to participate meaningfully in EOL discussions and ACP.28
Song et al29 adapted SPIRIT for use with patients with dementia and conducted a feasibility study with 23 patient-surrogate dyads.The mixed-methods study involved an expert panel review of the adapted SPIRIT, followed by a randomized trial with qualitative interviews. All 23 patients with dementia, including 14 with moderate dementia, were able to articulate their values and EOL preferences somewhat or very coherently (91.3% inter-rater reliability).29 In addition, dyad care goal congruence (agreement between patient’s EOL preferences and surrogate’s understanding of those preferences) and surrogate decision-making confidence (comfort in performing as a surrogate) were high and patient decisional conflict (patient difficulty in weighing the benefits and burdens of life-sustaining treatments and decision-making) was low, both at baseline as well as post intervention.29 Although preparedness for EOL decision-making outcome measures did not change, people with dementia and their surrogates perceived SPIRIT to be beneficial, particularly in helping them be on the same page.29
The randomized trial portion of the study (phase 2) continues to recruit 120 patient-surrogate dyads. Patient and surrogate self-reported preparedness for EOL decision-making are the primary outcomes, measured at baseline and 2 to 3 days post intervention. The estimated study completion date is May 31, 2022.30
Evidence-based clinical guidance can improve the process. Following the Belgian Centre for Evidence-Based Medicine’s procedures as a sample methodology, Piers et al2 developed evidence-based clinical recommendations for providers to use in the practical application of ACP in their care of patients with dementia.The researchers searched the literature; developed recommendations based on the evidence obtained, as well as their collective expert opinion; and performed validation using expert and end-user feedback and peer review. The study resulted in 32 recommendations focused on 8 domains that ranged from the beginning of the process (preconditions for optimal implementation of ACP) to later stages (ACP when it is difficult/no longer possible to communicate).2Specific guidance for ACP in dementia care include the following:
- ACP initiation. Begin conversations around the time of diagnosis, continue them throughout ongoing care, and revisit them when changes occur in the patient’s health, financial, or residential status.
- ACP conversations. Use conversations to identify significant others in the patient’s life (potential caregivers and/or surrogate decision makers) and explore the patient’s awareness of the disease and its trajectory. Discuss the patient’s values and beliefs, as well as their fears about, and preferences for, future care and the EOL.
- Role of significant others in the ACP process. Involve a patient’s significant others early in the ACP process, educate them about the surrogate decision-maker role, assess their disease awareness, and inform them about the disease trajectory and anticipated EOL decisions. 2
Continue to: Incorporate and document patients' values and preferences with LEAD
Incorporate and document patients’ values and preferences with LEAD. Dassel et al31 developed the Life-planning in Early Alzheimer’s and Dementia (LEAD) tool, which is a validated dementia-focused EOL planning tool that can be used to promote discussion and document a patient’s care preferences and values within the context of their changing cognitive ability.Dassel et al31 used a 4-phase mixed-method design that included (1) focus groups of patients with early-stage dementia and family caregivers, (2) clinical utility evaluation by content experts, (3) instrument completion sampling to evaluate its psychometric properties, and (4) additional focus groups to inform how the instrument should be used by families and in clinical practice.Six scales with high internal consistency and high test-retest reliability were identified: 3 scales represented patient values (concern about being a burden, the importance of quality [vs length] of life, and the preference for autonomy in decision-making) and 3 scales represented patient preferences (use of life-prolonging measures, controlling the timing of death, and the location of EOL care).31
The LEAD Guide can be used as a self-assessment tool that is completed individually and then shared with the surrogate decision maker and health care provider.32 It also can be used to guide conversations with the surrogate and physician, as well as with trusted family and friends. Using this framework, family physicians can facilitate EOL planning with the patient and their surrogate that is based on the patient’s values and preferences for EOL care prior to, and in anticipation of, the patient’s loss of decisional capacity.31
Facilitate discussions that improve outcomes
Conversations about EOL care are taking on increased importance as the population ages and treatments advance. Understanding the concerns of patients and their surrogate decision makers, as well as the resources available to guide these difficult discussions ( TABLE ), will help family physicians conduct effective conversations that enhance care, reduce the burden on surrogate decision makers, and have a positive impact on many clinical outcomes.
CORRESPONDENCE
Shirley Bodi, MD, 3000 Arlington Avenue, Department of Family Medicine, Dowling Hall, Suite 2200, University of Toledo College of Medicine and Life Sciences, Toledo, OH 43614; [email protected]
1. Bergenholtz Heidi, Timm HU, Missel M. Talking about end of life in general palliative care – what’s going on? A qualitative study on end-of-life conversations in an acute care hospital in Denmark. BMC Palliat Care. 2019;18:62. doi: 10.1186/s12904-019-0448-z
2. Piers R, Albers G, Gilissen J, et al. Advance care planning in dementia: recommendations for healthcare professionals. BMC Palliat Care. 2018;17:88. doi: 10.1186/s12904-018-0332-2
3. Tunzi M, Ventres W. A reflective case study in family medicine advance care planning conversations. J Am Board Fam Med. 2019;32:108-114. doi: 10.3122/jabfm.2019.01.180198
4. Schickedanz AD, Schillinger D, Landefeld CS, et al. A clinical framework for improving the advance care planning process: start with patients’ self-identified barriers. J Am Geriatr Soc. 2009;57:31-39. doi: 10.1111/j.1532-5415.2008.02093.x
5. Williams BC, Warshaw G, Fabiny AR, et al. Medicine in the 21st century: recommended essential geriatrics competencies for internal medicine and family medicine residents. J Grad Med Ed. 2010;2:373-383. doi: 10.4300/JGME-D-10-00065.1
6. Alano G, Pekmezaris R, Tai J, et al. Factors influencing older adults to complete advance directives. Palliat Support Care. 2010;8:267-275. doi: 10.1017/S1478951510000064
7. Wendler D, Rid A. Systematic review: the effect on surrogates of making treatment decisions for others. Ann Intern Med. 2011;154:336-346. doi: 10.7326/0003-4819-154-5-201103010-00008
8. Edelberg C. Advance care planning with and without an annual wellness visit. Ed Management website. June 1, 2016. Accessed November 16, 2021. ww.reliasmedia.com/articles/137829-advanced-care-planning-with-and-without-an-annual-wellness-visit
9. Centers for Medicare and Medicaid Services. Frequently asked questions about billing the physician fee schedule for advance care planning services. July 14, 2016. Accessed December 20, 2021. www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/PhysicianFeeSched/Downloads/FAQ-Advance-Care-Planning.pdf
10. World Health Organization. Palliative care fact sheet. August 5, 2020. Accessed November 16, 2021. www.who.int/news-room/fact-sheets/detail/palliative-care
11. National Institute on Aging. What are palliative care and hospice care? Reviewed May 14, 2021. Accessed December 20, 2021. www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care#palliative-vs-hospice
12. Rabow MW, Dibble SL, Pantilat, SZ, et al. The comprehensive care team: a controlled trial of outpatient palliative medicine consultation. Arch Intern Med. 2004;164:83-91. doi: 10.1001/archinte.164.1.83
13. Muir JC, Daley F, Davis MS, et al. Integrating palliative care into the outpatient, private practice oncology setting. J Pain Symptom Manage. 2010;40:126-135. doi: 10.1016/j.jpainsymman.2009.12.017
14. Hui D, Kim SH, Roquemore J, et al. Impact of timing and setting of palliative care referral on quality of end-of-life care in cancer patients. Cancer. 2014;120:1743-1749. doi: 10.1002/cncr.28628
15. Leung JM, Udris EM, Uman J, e al. The effect of end-of-life discussions on perceived quality of care and health status among patients with COPD. Chest. 2012;142:128-133. doi: 10.1378/chest.11-2222
16. Davison SN. End-of-life care preferences and needs: perceptions of patients with chronic kidney disease. Clin J Am Soc Nephrol. 2010;5:195-204. doi: 10.2215/CJN.05960809
17. Wright AA, Zhang B, Ray A, et al. Associations between end-of-life discussions, patients mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300:1665-1673. doi: 10.1001/jama.300.14.1665
18. Park E, Check DK, Yopp JM, et al. An exploratory study of end-of-life prognostic communication needs as reported by widowed fathers due to cancer. Psychooncology. 2015;24:1471-1476. doi: 10.1002/pon.3757
19. Tavares N, Jarrett N, Hunt K, et al. Palliative and end-of-life care conversations in COPD: a systematic literature review. ERJ Open Res. 2017;3:00068-2016. doi: 10.1183/23120541.00068-2016
20. Hancock K, Clayton JM, Parker SM, et al. Truth-telling in discussing prognosis in advanced life-limiting illnesses: a systematic review. Palliat Med. 2007;21:507-517. doi: 10.1177/0269216307080823
21. Parker SM, Clayton JM, Hancock K, et al. A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: patient/caregiver preferences for the content, style, and timing of information. J Pain Symptom Manage. 2007;34:81-93. doi: 10.1016/j.jpainsymman.2006.09.035
22. Janssen DJA, Spruit MA, Schols JMGA, et al. A call for high-quality advance care planning in outpatients with severe COPD or chronic heart failure. Chest. 2011;139:1081-1088. doi: 10.1378/chest.10-1753
23. Houben CHM, Spruit MA, Schols JM, et al. Patient-clinician communication about end-of-life care on patients with advanced chronic organ failure during one year. J Pain Symptom Manage. 2015;49:1109-1115. doi: 10.1016/j.jpainsymman.2014.12.008
24. Brighton LJ, Bristowe K. Communication in palliative care: talking about the end of life, before the end of life. Postgrad Med J. 2016;92:466-470. doi: 10.1136/postgradmedj-2015-133368
25. VitalTalk website. Accessed December 20, 2021. vitaltalk.org
26. Rabow MQ, McPhee SJ. Beyond breaking bad news: how to help patients who suffer. Wes J Med. 1999;171:260-263. www.ncbi.nlm.nih.gov/pmc/articles/PMC1305864
27. Pfeifer M, Head B. Which critical communication skills are essential for interdisciplinary end-of-life discussions? AMA J Ethics. 2018;8:E724-E731. doi: 10.1001/amajethics.2018.724
28. Song M-K, Ward SE, Hepburn K, et al. SPIRIT advance care planning intervention in early stage dementias: an NIH stage I behavioral intervention development trial. Contemp Clin Trials. 2018;71:55-62. doi: 10.1016/j.cct.2018.06.005
29. Song M-K, Ward SE, Hepburn K, et al. Can persons with dementia meaningfully participate in advance care planning discussions? A mixed-methods study of SPIRIT. J Palliat Med. 2019;22:1410-1416. doi: 10.1089/jpm.2019.0088
30. Two-phased study of SPIRIT in mild dementia. ClinicalTrials.gov Identifier: NCT03311711. Updated August 23, 2021. Accessed December 20, 2021. clinicaltrials.gov/ct2/show/NCT03311711
31. Dassel K, Utz R, Supiano K, et al. Development of a dementia-focused end-of-life planning tool: the LEAD Guide (Life-planning in Early Alzheimer’s and Dementia). Innov Aging. 2019;3:igz024. doi: 10.1093/geroni/igz024
32. Dassel K, Supiano K, Utz R, et al. The LEAD Guide. Life-planning in Early Alzheimer’s and Dementia. 2019. Accessed December 20, 2021. utahgwep.org/resources/search-all-resources/send/10-dementia/27-the-lead-guide#:~:text=The%20LEAD%20Guide%20(Life%2DPlanning,your%20decisions%20about%20your%20care
As the geriatric population continues to grow and treatment advances blur the lines between improving the length of life vs improving its quality, end-of-life (EOL) conversations are becoming increasingly important. These discussions are a crucial part of the advance care planning (ACP) process, in which patients discuss their treatment preferences and values with their caregiver/surrogate decision maker and health care provider to ultimately improve EOL decision-making and care. 1,2
EOL conversations are most helpful when incorporated in the outpatient setting as part of the patient’s ongoing health care plan or when initiating treatment for a chronic or life-threatening disease. Because family physicians promote general wellness, understand the patient’s health status and medical history, and have an ongoing—and often longstanding—relationship with patients and their families, we are ideally positioned to engage patients in EOL discussions. However, these conversations can be challenging in the outpatient setting, and often clinicians struggle not only to find ways to raise the subject, but also to find the time to have these supportive, meaningful conversations.3
In this article, we will address the importance of having EOL discussions in the outpatient setting, specifically about advance directives (ADs), and the reasons why patients and physicians might avoid these discussions. The role of palliative care in EOL care, along with its benefits and methods for overcoming patient and physician barriers to its successful use, are reviewed. Finally, we examine specific challenges associated with discussing EOL care with patients with decreased mental capacity, such as those with dementia, and provide strategies to successfully facilitate EOL discussions in these populations.
Moving patients toward completion of advance directives
Although many older patients express a desire to document their wishes before EOL situations arise, they may not fully understand the benefits of an AD or how to complete one. 4 Often the family physician is best equipped to address the patient’s concerns and discuss their goals for EOL care, as well as the potential situations that might arise.
Managing an aging population. Projections suggest that primary care physicians will encounter increasing numbers of geriatric patients in the next 2 decades. Thus it is essential for those in primary care to receive proper training during their residency for the care of this group of patients. According to a group of academic educators and geriatricians from internal medicine and family medicine whose goal was to define a set of minimal and essential competencies in the care of older adults, this includes training on how to discuss and document “advance care planning and goals of care with all patients with chronic or complex illness,” as well as how to differentiate among “types of code status, health care proxies, and advanced directives” within the state in which training occurs. 5
Educate patients and ease fears. Patients often avoid EOL conversations or wait for their family physician to start the conversation. They may not understand how ADs can help guide care or they may believe they are “too healthy” to have these conversations at this time. 4 Simply asking about existing ADs or providing forms to patients during an outpatient visit can open the door to more in-depth discussions. Some examples of opening phrases include:
- Do you have a living will or durable power of attorney for health care?
- Have you ever discussed your health care wishes with your loved ones?
- Who would you want to speak for you regarding your health care if you could not speak for yourself? Have you discussed your health care wishes with that person?
By normalizing the conversation as a routine part of comprehensive, patient-centered care, the family physician can allay patient fears, foster open and honest conversations, and encourage ongoing discussions with loved ones as situations arise.6
Continue to: When ADs are executed...
When ADs are executed, patients often fail to have meaningful conversations with their surrogates about specific treatment wishes or EOL scenarios. As a result, the surrogate may not feel prepared to serve as a proxy decision maker or may find the role extremely stressful.7 Physicians should encourage open conversations between patients and their surrogates about potential EOL scenarios when possible. When possible and appropriate, it is also important to encourage the patient to include the surrogate in future outpatient visits so that the surrogate can understand the patient’s health status and potential decisions they may need to make.
Don’t overlook clinician barriers. Family physicians also might avoid AD discussions because they do not understand laws that govern ADs, which vary from state to state. Various online resources for patients and physicians exist that clarify state-specific regulations and provide state-specific forms (TABLE).
Time constraints present another challenge for family physicians. This can be addressed by establishing workflows that include EOL elements. Also, the Centers for Medicare and Medicaid Services (CMS) has provided separate billing codes for AD discussion based on time spent explaining and discussing how to complete forms.8 CPT codes 99497 and 99498 are time-based codes that cover the first 30 minutes and each additional 30 minutes, respectively, of time spent explaining and discussing how to complete standard forms in a face-to-face setting (TABLE).9 CMS also includes discussion of AD documents as an optional element of the annual Medicare wellness visit.8
Improve quality of life for patients with any serious illness
Unlike hospice, which focuses on providing comfort rather than cure in the final months of a patient’s life, palliative care strives to prevent and relieve the patient’s suffering from a serious illness that is not immediately life-threatening. Palliative care focuses on the early identification, careful assessment, and treatment of the physical, psychosocial, and spiritual symptoms associated with a patient’s condition(s).10,11 It has been well established that palliative care has a positive effect on many clinical outcomes including symptom burden, quality of life, satisfaction with care, and survival.12-14 Patients who receive palliative care consultation also tend to perceive a higher quality of care.15
Conversations lead to better outcomes. Palliative care consultation is being increasingly used in the outpatient setting and can be introduced early in a disease process. Doing so provides an additional opportunity for the family physician to introduce an EOL discussion. A comparison of outcomes between patients who had initial inpatient palliative care consultation vs outpatient palliative care referral found that outpatient referral improved quality EOL care and was associated with significantly fewer emergency department visits (68% vs 48%; P < .001) and hospital admissions (86% vs 52%; P < .001), as well as shorter hospital stays in the last 30 days of life (3-11 vs 5-14 days; P = .01).14 Despite these benefits, 60% to 90% of patients with a serious illness report never having discussed EOL care issues with their clinician.16,17
Continue to: Early EOL discussions...
Early EOL discussions have also been shown to have a positive impact on families. In a US study, family members stated that timely EOL care discussions allowed them to make use of hospice and palliative care services sooner and to make the most of their time with the patient.18
Timing and communication are key
Logistically it can be difficult to gather the right people (patient, family, etc) in the right place and at the right time. For physicians, the most often cited barriers include inadequate time to conduct an EOL discussion, 19 a perceived lack of competence in EOL conversations, 1,20 difficulty navigating patient readiness, 21 and a fear of destroying hope due to prognostic uncertainty. 19,20
A prospective, observational study used the Quality of Communication (QOC) questionnaire to assess life-sustaining treatment preferences, ACP, and the quality of EOL care communication in Dutch outpatients with clinically stable but severe chronic obstructive pulmonary disease (n = 105) or congestive heart failure (n = 80). The QOC questionnaire is a validated instrument that asks patients to rate their physician on several communication skills from 0 (“the very worst” or “My doctor didn’t do this”) to 10 (“the very best”). In this study, quality communication was identified by patients as one of the most important skills for physicians to provide adequate EOL care. 22 While QOC ratings were high for general communication skills (median, 8.0 points), quality EOL care communication was rated very low (median, 0.0 points). Researchers say that this was primarily because most EOL topics were not discussed—especially spirituality, prognosis, and what dying might be like. 22 In a secondary analysis that evaluated quality of EOL care communication during 1-year follow-up of patients with advanced chronic organ failure (n = 265) with the QOC questionnaire, patient ratings improved to moderate to good (medians, 6-8 points) when these topics were addressed. 23
Pick a strategy and prepare. As the older population continues to grow, the demands of palliative care management cannot be met by specialists alone and the responsibility of discussing EOL care with patients and their families will increasingly fall to family physicians as well. 24 Several strategies and approaches have evolved to assist family physicians with acquiring the skills to conduct productive EOL discussions. These include widely referenced resources, such as VitalTalk 25 and the ABCDE Plan. 26 VitalTalk teaches skills to help clinicians navigate difficult conversations, 25 and the “ABCDE” method provides a pneumonic for recommendations for how to deliver bad news ( A dvance preparation; B uild a therapeutic environment/relationship; C ommunicate well; D eal with patient and family reactions; E ncourage and validate emotions). 26
Other strategies include familiarizing oneself with the patient’s medical history and present situation (eg, What are the patient’s symptoms? What do other involved clinicians think and recommend? What therapies have been attempted? What are the relevant social and emotional dynamics?); asking the patient who they want present for the EOL conversation; scheduling the conversation for when you can set aside an appropriate amount of time and in a private place where there will be no interruptions; and going into the meeting with your goal in mind, whether it is to deliver bad news, clarify the prognosis, establish goals of care, or communicate the patient’s goals and wishes for the EOL to those in attendance. 27 It can be very helpful to begin the conversation by clarifying what the patient and their family/surrogate understand about the current diagnosis and prognosis. From there, the family physician can present a “headline” that prepares them for the current conversation (eg, “I have your latest test results, and I need to share some serious news”). This can facilitate a more detailed discussion of the patient’s and surrogate’s goals of care. Using these strategies, family physicians can lead a productive EOL discussion that benefits everyone.
Continue to: How to navigate EOL discussions with patients with dementia
How to navigate EOL discussions with patients with dementia
EOL discussions with patients with dementia become even more complex and warrant specific discussion because one must consider the timing of such discussions, 2,28,29 the trajectory of the disease and how that affects the patient’s capacity for EOL conversations, and the critical importance of engaging caregivers/surrogate decision makers in these discussions. 2 ACP provides an opportunity for the physician, patient, and caregiver/surrogate to jointly explore the patient’s values, beliefs, and preferences for care through the EOL as the disease progresses and the patient’s decisional capacity declines.
Ensure meaningful participation with timing. EOL discussions should occur while the patient has the cognitive capacity to actively participate in the planning process. A National Institutes of Health stage I behavioral intervention development trial evaluated a structured psychoeducational intervention, known as SPIRIT (Sharing Patient’s Illness Representation to Increase Trust), that aimed to promote cognitive and emotional preparation for EOL decisions for patients and their surrogates.28 It was found to be effective in patients, including those with end-stage renal disease and advanced heart failure, and their surrogates.28 Preliminary results from the trial confirmed that people with mild-to-moderate dementia (recent Montreal Cognitive Assessment score ≥ 13) are able to participate meaningfully in EOL discussions and ACP.28
Song et al29 adapted SPIRIT for use with patients with dementia and conducted a feasibility study with 23 patient-surrogate dyads.The mixed-methods study involved an expert panel review of the adapted SPIRIT, followed by a randomized trial with qualitative interviews. All 23 patients with dementia, including 14 with moderate dementia, were able to articulate their values and EOL preferences somewhat or very coherently (91.3% inter-rater reliability).29 In addition, dyad care goal congruence (agreement between patient’s EOL preferences and surrogate’s understanding of those preferences) and surrogate decision-making confidence (comfort in performing as a surrogate) were high and patient decisional conflict (patient difficulty in weighing the benefits and burdens of life-sustaining treatments and decision-making) was low, both at baseline as well as post intervention.29 Although preparedness for EOL decision-making outcome measures did not change, people with dementia and their surrogates perceived SPIRIT to be beneficial, particularly in helping them be on the same page.29
The randomized trial portion of the study (phase 2) continues to recruit 120 patient-surrogate dyads. Patient and surrogate self-reported preparedness for EOL decision-making are the primary outcomes, measured at baseline and 2 to 3 days post intervention. The estimated study completion date is May 31, 2022.30
Evidence-based clinical guidance can improve the process. Following the Belgian Centre for Evidence-Based Medicine’s procedures as a sample methodology, Piers et al2 developed evidence-based clinical recommendations for providers to use in the practical application of ACP in their care of patients with dementia.The researchers searched the literature; developed recommendations based on the evidence obtained, as well as their collective expert opinion; and performed validation using expert and end-user feedback and peer review. The study resulted in 32 recommendations focused on 8 domains that ranged from the beginning of the process (preconditions for optimal implementation of ACP) to later stages (ACP when it is difficult/no longer possible to communicate).2Specific guidance for ACP in dementia care include the following:
- ACP initiation. Begin conversations around the time of diagnosis, continue them throughout ongoing care, and revisit them when changes occur in the patient’s health, financial, or residential status.
- ACP conversations. Use conversations to identify significant others in the patient’s life (potential caregivers and/or surrogate decision makers) and explore the patient’s awareness of the disease and its trajectory. Discuss the patient’s values and beliefs, as well as their fears about, and preferences for, future care and the EOL.
- Role of significant others in the ACP process. Involve a patient’s significant others early in the ACP process, educate them about the surrogate decision-maker role, assess their disease awareness, and inform them about the disease trajectory and anticipated EOL decisions. 2
Continue to: Incorporate and document patients' values and preferences with LEAD
Incorporate and document patients’ values and preferences with LEAD. Dassel et al31 developed the Life-planning in Early Alzheimer’s and Dementia (LEAD) tool, which is a validated dementia-focused EOL planning tool that can be used to promote discussion and document a patient’s care preferences and values within the context of their changing cognitive ability.Dassel et al31 used a 4-phase mixed-method design that included (1) focus groups of patients with early-stage dementia and family caregivers, (2) clinical utility evaluation by content experts, (3) instrument completion sampling to evaluate its psychometric properties, and (4) additional focus groups to inform how the instrument should be used by families and in clinical practice.Six scales with high internal consistency and high test-retest reliability were identified: 3 scales represented patient values (concern about being a burden, the importance of quality [vs length] of life, and the preference for autonomy in decision-making) and 3 scales represented patient preferences (use of life-prolonging measures, controlling the timing of death, and the location of EOL care).31
The LEAD Guide can be used as a self-assessment tool that is completed individually and then shared with the surrogate decision maker and health care provider.32 It also can be used to guide conversations with the surrogate and physician, as well as with trusted family and friends. Using this framework, family physicians can facilitate EOL planning with the patient and their surrogate that is based on the patient’s values and preferences for EOL care prior to, and in anticipation of, the patient’s loss of decisional capacity.31
Facilitate discussions that improve outcomes
Conversations about EOL care are taking on increased importance as the population ages and treatments advance. Understanding the concerns of patients and their surrogate decision makers, as well as the resources available to guide these difficult discussions ( TABLE ), will help family physicians conduct effective conversations that enhance care, reduce the burden on surrogate decision makers, and have a positive impact on many clinical outcomes.
CORRESPONDENCE
Shirley Bodi, MD, 3000 Arlington Avenue, Department of Family Medicine, Dowling Hall, Suite 2200, University of Toledo College of Medicine and Life Sciences, Toledo, OH 43614; [email protected]
As the geriatric population continues to grow and treatment advances blur the lines between improving the length of life vs improving its quality, end-of-life (EOL) conversations are becoming increasingly important. These discussions are a crucial part of the advance care planning (ACP) process, in which patients discuss their treatment preferences and values with their caregiver/surrogate decision maker and health care provider to ultimately improve EOL decision-making and care. 1,2
EOL conversations are most helpful when incorporated in the outpatient setting as part of the patient’s ongoing health care plan or when initiating treatment for a chronic or life-threatening disease. Because family physicians promote general wellness, understand the patient’s health status and medical history, and have an ongoing—and often longstanding—relationship with patients and their families, we are ideally positioned to engage patients in EOL discussions. However, these conversations can be challenging in the outpatient setting, and often clinicians struggle not only to find ways to raise the subject, but also to find the time to have these supportive, meaningful conversations.3
In this article, we will address the importance of having EOL discussions in the outpatient setting, specifically about advance directives (ADs), and the reasons why patients and physicians might avoid these discussions. The role of palliative care in EOL care, along with its benefits and methods for overcoming patient and physician barriers to its successful use, are reviewed. Finally, we examine specific challenges associated with discussing EOL care with patients with decreased mental capacity, such as those with dementia, and provide strategies to successfully facilitate EOL discussions in these populations.
Moving patients toward completion of advance directives
Although many older patients express a desire to document their wishes before EOL situations arise, they may not fully understand the benefits of an AD or how to complete one. 4 Often the family physician is best equipped to address the patient’s concerns and discuss their goals for EOL care, as well as the potential situations that might arise.
Managing an aging population. Projections suggest that primary care physicians will encounter increasing numbers of geriatric patients in the next 2 decades. Thus it is essential for those in primary care to receive proper training during their residency for the care of this group of patients. According to a group of academic educators and geriatricians from internal medicine and family medicine whose goal was to define a set of minimal and essential competencies in the care of older adults, this includes training on how to discuss and document “advance care planning and goals of care with all patients with chronic or complex illness,” as well as how to differentiate among “types of code status, health care proxies, and advanced directives” within the state in which training occurs. 5
Educate patients and ease fears. Patients often avoid EOL conversations or wait for their family physician to start the conversation. They may not understand how ADs can help guide care or they may believe they are “too healthy” to have these conversations at this time. 4 Simply asking about existing ADs or providing forms to patients during an outpatient visit can open the door to more in-depth discussions. Some examples of opening phrases include:
- Do you have a living will or durable power of attorney for health care?
- Have you ever discussed your health care wishes with your loved ones?
- Who would you want to speak for you regarding your health care if you could not speak for yourself? Have you discussed your health care wishes with that person?
By normalizing the conversation as a routine part of comprehensive, patient-centered care, the family physician can allay patient fears, foster open and honest conversations, and encourage ongoing discussions with loved ones as situations arise.6
Continue to: When ADs are executed...
When ADs are executed, patients often fail to have meaningful conversations with their surrogates about specific treatment wishes or EOL scenarios. As a result, the surrogate may not feel prepared to serve as a proxy decision maker or may find the role extremely stressful.7 Physicians should encourage open conversations between patients and their surrogates about potential EOL scenarios when possible. When possible and appropriate, it is also important to encourage the patient to include the surrogate in future outpatient visits so that the surrogate can understand the patient’s health status and potential decisions they may need to make.
Don’t overlook clinician barriers. Family physicians also might avoid AD discussions because they do not understand laws that govern ADs, which vary from state to state. Various online resources for patients and physicians exist that clarify state-specific regulations and provide state-specific forms (TABLE).
Time constraints present another challenge for family physicians. This can be addressed by establishing workflows that include EOL elements. Also, the Centers for Medicare and Medicaid Services (CMS) has provided separate billing codes for AD discussion based on time spent explaining and discussing how to complete forms.8 CPT codes 99497 and 99498 are time-based codes that cover the first 30 minutes and each additional 30 minutes, respectively, of time spent explaining and discussing how to complete standard forms in a face-to-face setting (TABLE).9 CMS also includes discussion of AD documents as an optional element of the annual Medicare wellness visit.8
Improve quality of life for patients with any serious illness
Unlike hospice, which focuses on providing comfort rather than cure in the final months of a patient’s life, palliative care strives to prevent and relieve the patient’s suffering from a serious illness that is not immediately life-threatening. Palliative care focuses on the early identification, careful assessment, and treatment of the physical, psychosocial, and spiritual symptoms associated with a patient’s condition(s).10,11 It has been well established that palliative care has a positive effect on many clinical outcomes including symptom burden, quality of life, satisfaction with care, and survival.12-14 Patients who receive palliative care consultation also tend to perceive a higher quality of care.15
Conversations lead to better outcomes. Palliative care consultation is being increasingly used in the outpatient setting and can be introduced early in a disease process. Doing so provides an additional opportunity for the family physician to introduce an EOL discussion. A comparison of outcomes between patients who had initial inpatient palliative care consultation vs outpatient palliative care referral found that outpatient referral improved quality EOL care and was associated with significantly fewer emergency department visits (68% vs 48%; P < .001) and hospital admissions (86% vs 52%; P < .001), as well as shorter hospital stays in the last 30 days of life (3-11 vs 5-14 days; P = .01).14 Despite these benefits, 60% to 90% of patients with a serious illness report never having discussed EOL care issues with their clinician.16,17
Continue to: Early EOL discussions...
Early EOL discussions have also been shown to have a positive impact on families. In a US study, family members stated that timely EOL care discussions allowed them to make use of hospice and palliative care services sooner and to make the most of their time with the patient.18
Timing and communication are key
Logistically it can be difficult to gather the right people (patient, family, etc) in the right place and at the right time. For physicians, the most often cited barriers include inadequate time to conduct an EOL discussion, 19 a perceived lack of competence in EOL conversations, 1,20 difficulty navigating patient readiness, 21 and a fear of destroying hope due to prognostic uncertainty. 19,20
A prospective, observational study used the Quality of Communication (QOC) questionnaire to assess life-sustaining treatment preferences, ACP, and the quality of EOL care communication in Dutch outpatients with clinically stable but severe chronic obstructive pulmonary disease (n = 105) or congestive heart failure (n = 80). The QOC questionnaire is a validated instrument that asks patients to rate their physician on several communication skills from 0 (“the very worst” or “My doctor didn’t do this”) to 10 (“the very best”). In this study, quality communication was identified by patients as one of the most important skills for physicians to provide adequate EOL care. 22 While QOC ratings were high for general communication skills (median, 8.0 points), quality EOL care communication was rated very low (median, 0.0 points). Researchers say that this was primarily because most EOL topics were not discussed—especially spirituality, prognosis, and what dying might be like. 22 In a secondary analysis that evaluated quality of EOL care communication during 1-year follow-up of patients with advanced chronic organ failure (n = 265) with the QOC questionnaire, patient ratings improved to moderate to good (medians, 6-8 points) when these topics were addressed. 23
Pick a strategy and prepare. As the older population continues to grow, the demands of palliative care management cannot be met by specialists alone and the responsibility of discussing EOL care with patients and their families will increasingly fall to family physicians as well. 24 Several strategies and approaches have evolved to assist family physicians with acquiring the skills to conduct productive EOL discussions. These include widely referenced resources, such as VitalTalk 25 and the ABCDE Plan. 26 VitalTalk teaches skills to help clinicians navigate difficult conversations, 25 and the “ABCDE” method provides a pneumonic for recommendations for how to deliver bad news ( A dvance preparation; B uild a therapeutic environment/relationship; C ommunicate well; D eal with patient and family reactions; E ncourage and validate emotions). 26
Other strategies include familiarizing oneself with the patient’s medical history and present situation (eg, What are the patient’s symptoms? What do other involved clinicians think and recommend? What therapies have been attempted? What are the relevant social and emotional dynamics?); asking the patient who they want present for the EOL conversation; scheduling the conversation for when you can set aside an appropriate amount of time and in a private place where there will be no interruptions; and going into the meeting with your goal in mind, whether it is to deliver bad news, clarify the prognosis, establish goals of care, or communicate the patient’s goals and wishes for the EOL to those in attendance. 27 It can be very helpful to begin the conversation by clarifying what the patient and their family/surrogate understand about the current diagnosis and prognosis. From there, the family physician can present a “headline” that prepares them for the current conversation (eg, “I have your latest test results, and I need to share some serious news”). This can facilitate a more detailed discussion of the patient’s and surrogate’s goals of care. Using these strategies, family physicians can lead a productive EOL discussion that benefits everyone.
Continue to: How to navigate EOL discussions with patients with dementia
How to navigate EOL discussions with patients with dementia
EOL discussions with patients with dementia become even more complex and warrant specific discussion because one must consider the timing of such discussions, 2,28,29 the trajectory of the disease and how that affects the patient’s capacity for EOL conversations, and the critical importance of engaging caregivers/surrogate decision makers in these discussions. 2 ACP provides an opportunity for the physician, patient, and caregiver/surrogate to jointly explore the patient’s values, beliefs, and preferences for care through the EOL as the disease progresses and the patient’s decisional capacity declines.
Ensure meaningful participation with timing. EOL discussions should occur while the patient has the cognitive capacity to actively participate in the planning process. A National Institutes of Health stage I behavioral intervention development trial evaluated a structured psychoeducational intervention, known as SPIRIT (Sharing Patient’s Illness Representation to Increase Trust), that aimed to promote cognitive and emotional preparation for EOL decisions for patients and their surrogates.28 It was found to be effective in patients, including those with end-stage renal disease and advanced heart failure, and their surrogates.28 Preliminary results from the trial confirmed that people with mild-to-moderate dementia (recent Montreal Cognitive Assessment score ≥ 13) are able to participate meaningfully in EOL discussions and ACP.28
Song et al29 adapted SPIRIT for use with patients with dementia and conducted a feasibility study with 23 patient-surrogate dyads.The mixed-methods study involved an expert panel review of the adapted SPIRIT, followed by a randomized trial with qualitative interviews. All 23 patients with dementia, including 14 with moderate dementia, were able to articulate their values and EOL preferences somewhat or very coherently (91.3% inter-rater reliability).29 In addition, dyad care goal congruence (agreement between patient’s EOL preferences and surrogate’s understanding of those preferences) and surrogate decision-making confidence (comfort in performing as a surrogate) were high and patient decisional conflict (patient difficulty in weighing the benefits and burdens of life-sustaining treatments and decision-making) was low, both at baseline as well as post intervention.29 Although preparedness for EOL decision-making outcome measures did not change, people with dementia and their surrogates perceived SPIRIT to be beneficial, particularly in helping them be on the same page.29
The randomized trial portion of the study (phase 2) continues to recruit 120 patient-surrogate dyads. Patient and surrogate self-reported preparedness for EOL decision-making are the primary outcomes, measured at baseline and 2 to 3 days post intervention. The estimated study completion date is May 31, 2022.30
Evidence-based clinical guidance can improve the process. Following the Belgian Centre for Evidence-Based Medicine’s procedures as a sample methodology, Piers et al2 developed evidence-based clinical recommendations for providers to use in the practical application of ACP in their care of patients with dementia.The researchers searched the literature; developed recommendations based on the evidence obtained, as well as their collective expert opinion; and performed validation using expert and end-user feedback and peer review. The study resulted in 32 recommendations focused on 8 domains that ranged from the beginning of the process (preconditions for optimal implementation of ACP) to later stages (ACP when it is difficult/no longer possible to communicate).2Specific guidance for ACP in dementia care include the following:
- ACP initiation. Begin conversations around the time of diagnosis, continue them throughout ongoing care, and revisit them when changes occur in the patient’s health, financial, or residential status.
- ACP conversations. Use conversations to identify significant others in the patient’s life (potential caregivers and/or surrogate decision makers) and explore the patient’s awareness of the disease and its trajectory. Discuss the patient’s values and beliefs, as well as their fears about, and preferences for, future care and the EOL.
- Role of significant others in the ACP process. Involve a patient’s significant others early in the ACP process, educate them about the surrogate decision-maker role, assess their disease awareness, and inform them about the disease trajectory and anticipated EOL decisions. 2
Continue to: Incorporate and document patients' values and preferences with LEAD
Incorporate and document patients’ values and preferences with LEAD. Dassel et al31 developed the Life-planning in Early Alzheimer’s and Dementia (LEAD) tool, which is a validated dementia-focused EOL planning tool that can be used to promote discussion and document a patient’s care preferences and values within the context of their changing cognitive ability.Dassel et al31 used a 4-phase mixed-method design that included (1) focus groups of patients with early-stage dementia and family caregivers, (2) clinical utility evaluation by content experts, (3) instrument completion sampling to evaluate its psychometric properties, and (4) additional focus groups to inform how the instrument should be used by families and in clinical practice.Six scales with high internal consistency and high test-retest reliability were identified: 3 scales represented patient values (concern about being a burden, the importance of quality [vs length] of life, and the preference for autonomy in decision-making) and 3 scales represented patient preferences (use of life-prolonging measures, controlling the timing of death, and the location of EOL care).31
The LEAD Guide can be used as a self-assessment tool that is completed individually and then shared with the surrogate decision maker and health care provider.32 It also can be used to guide conversations with the surrogate and physician, as well as with trusted family and friends. Using this framework, family physicians can facilitate EOL planning with the patient and their surrogate that is based on the patient’s values and preferences for EOL care prior to, and in anticipation of, the patient’s loss of decisional capacity.31
Facilitate discussions that improve outcomes
Conversations about EOL care are taking on increased importance as the population ages and treatments advance. Understanding the concerns of patients and their surrogate decision makers, as well as the resources available to guide these difficult discussions ( TABLE ), will help family physicians conduct effective conversations that enhance care, reduce the burden on surrogate decision makers, and have a positive impact on many clinical outcomes.
CORRESPONDENCE
Shirley Bodi, MD, 3000 Arlington Avenue, Department of Family Medicine, Dowling Hall, Suite 2200, University of Toledo College of Medicine and Life Sciences, Toledo, OH 43614; [email protected]
1. Bergenholtz Heidi, Timm HU, Missel M. Talking about end of life in general palliative care – what’s going on? A qualitative study on end-of-life conversations in an acute care hospital in Denmark. BMC Palliat Care. 2019;18:62. doi: 10.1186/s12904-019-0448-z
2. Piers R, Albers G, Gilissen J, et al. Advance care planning in dementia: recommendations for healthcare professionals. BMC Palliat Care. 2018;17:88. doi: 10.1186/s12904-018-0332-2
3. Tunzi M, Ventres W. A reflective case study in family medicine advance care planning conversations. J Am Board Fam Med. 2019;32:108-114. doi: 10.3122/jabfm.2019.01.180198
4. Schickedanz AD, Schillinger D, Landefeld CS, et al. A clinical framework for improving the advance care planning process: start with patients’ self-identified barriers. J Am Geriatr Soc. 2009;57:31-39. doi: 10.1111/j.1532-5415.2008.02093.x
5. Williams BC, Warshaw G, Fabiny AR, et al. Medicine in the 21st century: recommended essential geriatrics competencies for internal medicine and family medicine residents. J Grad Med Ed. 2010;2:373-383. doi: 10.4300/JGME-D-10-00065.1
6. Alano G, Pekmezaris R, Tai J, et al. Factors influencing older adults to complete advance directives. Palliat Support Care. 2010;8:267-275. doi: 10.1017/S1478951510000064
7. Wendler D, Rid A. Systematic review: the effect on surrogates of making treatment decisions for others. Ann Intern Med. 2011;154:336-346. doi: 10.7326/0003-4819-154-5-201103010-00008
8. Edelberg C. Advance care planning with and without an annual wellness visit. Ed Management website. June 1, 2016. Accessed November 16, 2021. ww.reliasmedia.com/articles/137829-advanced-care-planning-with-and-without-an-annual-wellness-visit
9. Centers for Medicare and Medicaid Services. Frequently asked questions about billing the physician fee schedule for advance care planning services. July 14, 2016. Accessed December 20, 2021. www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/PhysicianFeeSched/Downloads/FAQ-Advance-Care-Planning.pdf
10. World Health Organization. Palliative care fact sheet. August 5, 2020. Accessed November 16, 2021. www.who.int/news-room/fact-sheets/detail/palliative-care
11. National Institute on Aging. What are palliative care and hospice care? Reviewed May 14, 2021. Accessed December 20, 2021. www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care#palliative-vs-hospice
12. Rabow MW, Dibble SL, Pantilat, SZ, et al. The comprehensive care team: a controlled trial of outpatient palliative medicine consultation. Arch Intern Med. 2004;164:83-91. doi: 10.1001/archinte.164.1.83
13. Muir JC, Daley F, Davis MS, et al. Integrating palliative care into the outpatient, private practice oncology setting. J Pain Symptom Manage. 2010;40:126-135. doi: 10.1016/j.jpainsymman.2009.12.017
14. Hui D, Kim SH, Roquemore J, et al. Impact of timing and setting of palliative care referral on quality of end-of-life care in cancer patients. Cancer. 2014;120:1743-1749. doi: 10.1002/cncr.28628
15. Leung JM, Udris EM, Uman J, e al. The effect of end-of-life discussions on perceived quality of care and health status among patients with COPD. Chest. 2012;142:128-133. doi: 10.1378/chest.11-2222
16. Davison SN. End-of-life care preferences and needs: perceptions of patients with chronic kidney disease. Clin J Am Soc Nephrol. 2010;5:195-204. doi: 10.2215/CJN.05960809
17. Wright AA, Zhang B, Ray A, et al. Associations between end-of-life discussions, patients mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300:1665-1673. doi: 10.1001/jama.300.14.1665
18. Park E, Check DK, Yopp JM, et al. An exploratory study of end-of-life prognostic communication needs as reported by widowed fathers due to cancer. Psychooncology. 2015;24:1471-1476. doi: 10.1002/pon.3757
19. Tavares N, Jarrett N, Hunt K, et al. Palliative and end-of-life care conversations in COPD: a systematic literature review. ERJ Open Res. 2017;3:00068-2016. doi: 10.1183/23120541.00068-2016
20. Hancock K, Clayton JM, Parker SM, et al. Truth-telling in discussing prognosis in advanced life-limiting illnesses: a systematic review. Palliat Med. 2007;21:507-517. doi: 10.1177/0269216307080823
21. Parker SM, Clayton JM, Hancock K, et al. A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: patient/caregiver preferences for the content, style, and timing of information. J Pain Symptom Manage. 2007;34:81-93. doi: 10.1016/j.jpainsymman.2006.09.035
22. Janssen DJA, Spruit MA, Schols JMGA, et al. A call for high-quality advance care planning in outpatients with severe COPD or chronic heart failure. Chest. 2011;139:1081-1088. doi: 10.1378/chest.10-1753
23. Houben CHM, Spruit MA, Schols JM, et al. Patient-clinician communication about end-of-life care on patients with advanced chronic organ failure during one year. J Pain Symptom Manage. 2015;49:1109-1115. doi: 10.1016/j.jpainsymman.2014.12.008
24. Brighton LJ, Bristowe K. Communication in palliative care: talking about the end of life, before the end of life. Postgrad Med J. 2016;92:466-470. doi: 10.1136/postgradmedj-2015-133368
25. VitalTalk website. Accessed December 20, 2021. vitaltalk.org
26. Rabow MQ, McPhee SJ. Beyond breaking bad news: how to help patients who suffer. Wes J Med. 1999;171:260-263. www.ncbi.nlm.nih.gov/pmc/articles/PMC1305864
27. Pfeifer M, Head B. Which critical communication skills are essential for interdisciplinary end-of-life discussions? AMA J Ethics. 2018;8:E724-E731. doi: 10.1001/amajethics.2018.724
28. Song M-K, Ward SE, Hepburn K, et al. SPIRIT advance care planning intervention in early stage dementias: an NIH stage I behavioral intervention development trial. Contemp Clin Trials. 2018;71:55-62. doi: 10.1016/j.cct.2018.06.005
29. Song M-K, Ward SE, Hepburn K, et al. Can persons with dementia meaningfully participate in advance care planning discussions? A mixed-methods study of SPIRIT. J Palliat Med. 2019;22:1410-1416. doi: 10.1089/jpm.2019.0088
30. Two-phased study of SPIRIT in mild dementia. ClinicalTrials.gov Identifier: NCT03311711. Updated August 23, 2021. Accessed December 20, 2021. clinicaltrials.gov/ct2/show/NCT03311711
31. Dassel K, Utz R, Supiano K, et al. Development of a dementia-focused end-of-life planning tool: the LEAD Guide (Life-planning in Early Alzheimer’s and Dementia). Innov Aging. 2019;3:igz024. doi: 10.1093/geroni/igz024
32. Dassel K, Supiano K, Utz R, et al. The LEAD Guide. Life-planning in Early Alzheimer’s and Dementia. 2019. Accessed December 20, 2021. utahgwep.org/resources/search-all-resources/send/10-dementia/27-the-lead-guide#:~:text=The%20LEAD%20Guide%20(Life%2DPlanning,your%20decisions%20about%20your%20care
1. Bergenholtz Heidi, Timm HU, Missel M. Talking about end of life in general palliative care – what’s going on? A qualitative study on end-of-life conversations in an acute care hospital in Denmark. BMC Palliat Care. 2019;18:62. doi: 10.1186/s12904-019-0448-z
2. Piers R, Albers G, Gilissen J, et al. Advance care planning in dementia: recommendations for healthcare professionals. BMC Palliat Care. 2018;17:88. doi: 10.1186/s12904-018-0332-2
3. Tunzi M, Ventres W. A reflective case study in family medicine advance care planning conversations. J Am Board Fam Med. 2019;32:108-114. doi: 10.3122/jabfm.2019.01.180198
4. Schickedanz AD, Schillinger D, Landefeld CS, et al. A clinical framework for improving the advance care planning process: start with patients’ self-identified barriers. J Am Geriatr Soc. 2009;57:31-39. doi: 10.1111/j.1532-5415.2008.02093.x
5. Williams BC, Warshaw G, Fabiny AR, et al. Medicine in the 21st century: recommended essential geriatrics competencies for internal medicine and family medicine residents. J Grad Med Ed. 2010;2:373-383. doi: 10.4300/JGME-D-10-00065.1
6. Alano G, Pekmezaris R, Tai J, et al. Factors influencing older adults to complete advance directives. Palliat Support Care. 2010;8:267-275. doi: 10.1017/S1478951510000064
7. Wendler D, Rid A. Systematic review: the effect on surrogates of making treatment decisions for others. Ann Intern Med. 2011;154:336-346. doi: 10.7326/0003-4819-154-5-201103010-00008
8. Edelberg C. Advance care planning with and without an annual wellness visit. Ed Management website. June 1, 2016. Accessed November 16, 2021. ww.reliasmedia.com/articles/137829-advanced-care-planning-with-and-without-an-annual-wellness-visit
9. Centers for Medicare and Medicaid Services. Frequently asked questions about billing the physician fee schedule for advance care planning services. July 14, 2016. Accessed December 20, 2021. www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/PhysicianFeeSched/Downloads/FAQ-Advance-Care-Planning.pdf
10. World Health Organization. Palliative care fact sheet. August 5, 2020. Accessed November 16, 2021. www.who.int/news-room/fact-sheets/detail/palliative-care
11. National Institute on Aging. What are palliative care and hospice care? Reviewed May 14, 2021. Accessed December 20, 2021. www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care#palliative-vs-hospice
12. Rabow MW, Dibble SL, Pantilat, SZ, et al. The comprehensive care team: a controlled trial of outpatient palliative medicine consultation. Arch Intern Med. 2004;164:83-91. doi: 10.1001/archinte.164.1.83
13. Muir JC, Daley F, Davis MS, et al. Integrating palliative care into the outpatient, private practice oncology setting. J Pain Symptom Manage. 2010;40:126-135. doi: 10.1016/j.jpainsymman.2009.12.017
14. Hui D, Kim SH, Roquemore J, et al. Impact of timing and setting of palliative care referral on quality of end-of-life care in cancer patients. Cancer. 2014;120:1743-1749. doi: 10.1002/cncr.28628
15. Leung JM, Udris EM, Uman J, e al. The effect of end-of-life discussions on perceived quality of care and health status among patients with COPD. Chest. 2012;142:128-133. doi: 10.1378/chest.11-2222
16. Davison SN. End-of-life care preferences and needs: perceptions of patients with chronic kidney disease. Clin J Am Soc Nephrol. 2010;5:195-204. doi: 10.2215/CJN.05960809
17. Wright AA, Zhang B, Ray A, et al. Associations between end-of-life discussions, patients mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300:1665-1673. doi: 10.1001/jama.300.14.1665
18. Park E, Check DK, Yopp JM, et al. An exploratory study of end-of-life prognostic communication needs as reported by widowed fathers due to cancer. Psychooncology. 2015;24:1471-1476. doi: 10.1002/pon.3757
19. Tavares N, Jarrett N, Hunt K, et al. Palliative and end-of-life care conversations in COPD: a systematic literature review. ERJ Open Res. 2017;3:00068-2016. doi: 10.1183/23120541.00068-2016
20. Hancock K, Clayton JM, Parker SM, et al. Truth-telling in discussing prognosis in advanced life-limiting illnesses: a systematic review. Palliat Med. 2007;21:507-517. doi: 10.1177/0269216307080823
21. Parker SM, Clayton JM, Hancock K, et al. A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: patient/caregiver preferences for the content, style, and timing of information. J Pain Symptom Manage. 2007;34:81-93. doi: 10.1016/j.jpainsymman.2006.09.035
22. Janssen DJA, Spruit MA, Schols JMGA, et al. A call for high-quality advance care planning in outpatients with severe COPD or chronic heart failure. Chest. 2011;139:1081-1088. doi: 10.1378/chest.10-1753
23. Houben CHM, Spruit MA, Schols JM, et al. Patient-clinician communication about end-of-life care on patients with advanced chronic organ failure during one year. J Pain Symptom Manage. 2015;49:1109-1115. doi: 10.1016/j.jpainsymman.2014.12.008
24. Brighton LJ, Bristowe K. Communication in palliative care: talking about the end of life, before the end of life. Postgrad Med J. 2016;92:466-470. doi: 10.1136/postgradmedj-2015-133368
25. VitalTalk website. Accessed December 20, 2021. vitaltalk.org
26. Rabow MQ, McPhee SJ. Beyond breaking bad news: how to help patients who suffer. Wes J Med. 1999;171:260-263. www.ncbi.nlm.nih.gov/pmc/articles/PMC1305864
27. Pfeifer M, Head B. Which critical communication skills are essential for interdisciplinary end-of-life discussions? AMA J Ethics. 2018;8:E724-E731. doi: 10.1001/amajethics.2018.724
28. Song M-K, Ward SE, Hepburn K, et al. SPIRIT advance care planning intervention in early stage dementias: an NIH stage I behavioral intervention development trial. Contemp Clin Trials. 2018;71:55-62. doi: 10.1016/j.cct.2018.06.005
29. Song M-K, Ward SE, Hepburn K, et al. Can persons with dementia meaningfully participate in advance care planning discussions? A mixed-methods study of SPIRIT. J Palliat Med. 2019;22:1410-1416. doi: 10.1089/jpm.2019.0088
30. Two-phased study of SPIRIT in mild dementia. ClinicalTrials.gov Identifier: NCT03311711. Updated August 23, 2021. Accessed December 20, 2021. clinicaltrials.gov/ct2/show/NCT03311711
31. Dassel K, Utz R, Supiano K, et al. Development of a dementia-focused end-of-life planning tool: the LEAD Guide (Life-planning in Early Alzheimer’s and Dementia). Innov Aging. 2019;3:igz024. doi: 10.1093/geroni/igz024
32. Dassel K, Supiano K, Utz R, et al. The LEAD Guide. Life-planning in Early Alzheimer’s and Dementia. 2019. Accessed December 20, 2021. utahgwep.org/resources/search-all-resources/send/10-dementia/27-the-lead-guide#:~:text=The%20LEAD%20Guide%20(Life%2DPlanning,your%20decisions%20about%20your%20care
PRACTICE RECOMMENDATIONS
› Improve patients’ quality of life and satisfaction with care through the successful implementation of palliative care. C
› Initiate end-of-life (EOL) discussions with patients with dementia at diagnosis, while the patient is cognizant and able to actively express their values and preferences for EOL care. C
› Engage surrogate decision makers in conversations about dementia, its trajectory, and their role in EOL care early in the process. C
Strength of recommendation (SOR)
A Good-quality patient-oriented evidence
B Inconsistent or limited-quality patient-oriented evidence
C Consensus, usual practice, opinion, disease-oriented evidence, case series