Cleveland Clinic Journal of Medicine

Technology has infiltrated all parts of our everyday lives, including healthcare. Patients can make and cancel appointments, send e-mails directly to their physician, and request prescription refills—all through electronic portals. Physicians and healthcare providers must adjust to these changes in care-delivery models. Primary care providers must also adapt as younger generations seek access for their health needs outside of the doctor’s office.

See related editorial

And so it is with everyday life. Online banking and bill-paying is common. Groceries can be bought online and delivered within an hour. Connecting with family or friends around the world can be done with the touch of a button. In the United States, 90% of adults own a cell phone; many do not have a land line. More than 65% of adult Americans under age 75 own a smart phone, and 50% of the public owns a tablet computer.¹

DRIVERS OF CHANGE: THE MILLENNIALS

The development and use of new technology is driven by the coming of age of the youngest adult population, ie, “Generation Y” or millennials, ie, persons born between 1981 and 1996.² They now account for 28% of the US adult population, surpassing the baby boomers (born 1946 to 1964) by 8 million.³

Millennials have grown up with the World Wide Web at their fingertips. They are accustomed to an environment full of choices and unlimited, instantly available information.⁴

Millennials are cost-conscious shoppers who desire convenience and quick access. As patients, they often forgo traditional doctor’s office visits, turning instead to the Internet for quick answers to their questions in blogs and websites.⁵ A Kaiser Family Foundation survey in 2018 indicated that only a quarter of millennials see a primary care physician for healthcare needs.⁶

The shortage of primary care physicians

There are several reasons for this. Primary care physicians are in short supply, more Americans have insurance after the passage of the Affordable Care Act, and more physicians are working part-time or retiring earlier than in previous generations. There will be a continued shortfall of 15,000 to 49,000 full-time-equivalent primary care physicians by 2030.⁷ A survey of 15 large metropolitan markets found that the average wait time for a primary care new patient appointment increased to 24.1 days—a 30% increase from 2014. In some cities, the wait time can be 3 to 4 months.⁸

Older patients of the baby-boomer generation tend to discuss medical issues with their primary care physician, often relying on their feedback to improve their health lifestyle choices.⁹ Baby boomers who are Medicare subscribers tend to see their regular doctor at least once or twice a year¹⁰; trust is built with this continuity in care.

The rise of pharmacy clinics

But the shortage of primary care physicians and the desire of younger patients for immediate access to care have fueled the growth of new options for access, such as retail clinics in large pharmacies. These clinics are mostly found in the South and Midwest and are staffed by nurse practitioners,¹¹ and 90% of their billing falls under 10 common diagnoses, including urinary tract and upper respiratory infections. More than 40% of patients seeking care at retail pharmacy clinics are 18 to 44 years of age, and less than 25% of this group have a primary care provider.¹¹ These clinics have shorter wait times and limited out-of-pocket costs, and they are more convenient. In a study of adults visiting these clinics for vaccination, 30% did so during evening, weekend, and holiday hours, when traditional doctors’ offices are closed.¹²

Telemedicine’s foothold

Telemedicine has also taken a foothold in healthcare. Initially used for episodic illnesses, there is now growing acceptance of telemedicine for management of chronic physical and mental health problems. Accessibility to a doctor via a mobile device while at home has proven to be helpful to young, elderly, and minority patients living in rural areas,¹³ although reimbursement and legal issues continue to constrain its growth.¹⁴ Telemedicine is predicted to grow by nearly 15% from now to 2025, especially in North America and Europe, where technology has kept pace and government initiatives are encouraging its advancement.¹⁵

The American College of Physicians has published recommendations on how best to use telemedicine, especially when there is already an established patient-physician relationship. Telemedicine can bridge the divide for those who lack access to care because of geographic constraints or who cannot afford a regular doctor’s office appointment.¹⁶ It can also allow healthcare “extenders” like social workers, nutritionists, pharmacists, and nurses to work collaboratively with the primary care physician to improve patient education and outcomes.¹⁷

Wearable devices

The wearable device market continues to expand, in large part due to the increased availability and utilization of mobile technology. These gadgets can record steps, sleep, and heart rate. Consumer fitness trackers can give patients insight into their activity levels and encourage them to modify their behavior, ie, get up and move around more.¹⁷ The Deloitte Center for Health Solutions survey in 2018 showed that 62% of millennials use consumer fitness trackers to help meet their wellness goals, compared with 16% of seniors and 25% of baby boomers.¹⁸ There are few studies showing that these devices improve overall health promotion or decrease healthcare costs,^17,19 but research is ongoing.

And the “generation gap” in technology’s uptake is slowly closing: 81% of American adults own a smartphone, and the rate in people over age 50 increased from 53% in 2015 to 67% in 2018.²⁰ By comparison, 92% of millennials own a smartphone.¹

Smartphone apps

A 2015 survey of more than 1,600 US adults found that 58% had downloaded an application to their smartphone to track their health needs, with 41% using more than 5 health-related apps; the most commonly downloaded apps tracked physical activity, food intake, exercise programs or weight loss progress.²¹

Users of mobile health apps are generally younger and more highly educated than nonusers.²² However, baby boomers are willing to try mobile health apps if the apps are intuitive, accessible, and effective; this is important, especially since this group accounts for more than 20% of US healthcare expenditures.²³ Engaging and empowering baby boomers to use this technology may allow them to remain independent, live healthier, and avoid unnecessary office visits, thus decreasing strain on the limited healthcare workforce.²³

Physicians and physician educators should be aware of this generational shift. Millennial-aged doctors will continue to embrace technology to achieve their work-life balance in order to avoid burnout and maintain robust primary care practices whether in the office or outside of it.

Medical school curricula

Medical schools need to adjust their curricula to prepare the next generation of physicians to engage with these new healthcare delivery models and technology. Practicing telemedicine, assessing mobile app safety and utility, and effectively integrating data from patient-specific devices represent a new skill set that is considerably different from the typical face-to-face encounters learners experience today.

Recognizing this, more than 50% of medical schools have added telemedicine and digital health to the curriculum,²⁴ with suggestions to include telemedicine-related content in the Accreditation Council for Graduate Medical Education core competencies.²⁵

Improving the electronic medical record

Maximizing the efficiency of electronic medical records will also be important because physicians currently spend more than 50% of their workday on documentation and administrative tasks; for every 1 hour of patient contact, physicians spend 2 hours in front of the electronic medical record.²⁶ End-users (doctors, nurses, pharmacists, scribes) should interact or engage with developers of electronic medical record systems to promote platforms that enhance workflow, increase connectivity to mobile apps, foster team collaboration, and provide consistency in patient safety and privacy.²⁷

Early and continuous education on use of the electronic medical record should be routine, as proficiency improves work-life balance, physician job satisfaction, and patient care by reducing after-hours note completion and in-box tasks leading to burnout.²⁸

Technology-enabled primary care

Technology-enabled healthcare is here to stay and will continue to evolve, incorporating telehealth, smartphones, mobile apps, in-home and wearable devices, and online video communication.¹⁷ Clinicians will need to be adept at working with these technologies to advance quality care in population health. It will require clinician training and professional development, advances in technology, and revised reimbursement policies.¹⁷ But despite the increased use of mobile apps, there remain concerns about the possible dangers associated with their use, including breaches in confidentiality, conflicts of interest, and lack of professional medical involvement and evidence in their design.²⁹

THE IMPORTANCE OF BEING SAVVY

There is a growing need for primary care providers to be technologically savvy and readily accessible via e-mail, healthcare portals, or in the office to keep up with the generational shifts and expectations occurring in this decade. Healthcare systems should have the right infrastructure in place, including efficient Web platforms to support telemedicine or to synchronize digital tracking devices, as well as a trained workforce to understand and implement these revolutionary changes into everyday practice. Educators will need to provide training in these changing platforms to medical students and residents. Primary care will evolve to redefine its role within the context of these emerging technologies¹⁷ and to adjust to these market demands in order to stay relevant.

Technology has infiltrated all parts of our everyday lives, including healthcare. Patients can make and cancel appointments, send e-mails directly to their physician, and request prescription refills—all through electronic portals. Physicians and healthcare providers must adjust to these changes in care-delivery models. Primary care providers must also adapt as younger generations seek access for their health needs outside of the doctor’s office.

See related editorial

And so it is with everyday life. Online banking and bill-paying is common. Groceries can be bought online and delivered within an hour. Connecting with family or friends around the world can be done with the touch of a button. In the United States, 90% of adults own a cell phone; many do not have a land line. More than 65% of adult Americans under age 75 own a smart phone, and 50% of the public owns a tablet computer.¹

DRIVERS OF CHANGE: THE MILLENNIALS

The development and use of new technology is driven by the coming of age of the youngest adult population, ie, “Generation Y” or millennials, ie, persons born between 1981 and 1996.² They now account for 28% of the US adult population, surpassing the baby boomers (born 1946 to 1964) by 8 million.³

Millennials have grown up with the World Wide Web at their fingertips. They are accustomed to an environment full of choices and unlimited, instantly available information.⁴

Millennials are cost-conscious shoppers who desire convenience and quick access. As patients, they often forgo traditional doctor’s office visits, turning instead to the Internet for quick answers to their questions in blogs and websites.⁵ A Kaiser Family Foundation survey in 2018 indicated that only a quarter of millennials see a primary care physician for healthcare needs.⁶

The shortage of primary care physicians

There are several reasons for this. Primary care physicians are in short supply, more Americans have insurance after the passage of the Affordable Care Act, and more physicians are working part-time or retiring earlier than in previous generations. There will be a continued shortfall of 15,000 to 49,000 full-time-equivalent primary care physicians by 2030.⁷ A survey of 15 large metropolitan markets found that the average wait time for a primary care new patient appointment increased to 24.1 days—a 30% increase from 2014. In some cities, the wait time can be 3 to 4 months.⁸

Older patients of the baby-boomer generation tend to discuss medical issues with their primary care physician, often relying on their feedback to improve their health lifestyle choices.⁹ Baby boomers who are Medicare subscribers tend to see their regular doctor at least once or twice a year¹⁰; trust is built with this continuity in care.

The rise of pharmacy clinics

But the shortage of primary care physicians and the desire of younger patients for immediate access to care have fueled the growth of new options for access, such as retail clinics in large pharmacies. These clinics are mostly found in the South and Midwest and are staffed by nurse practitioners,¹¹ and 90% of their billing falls under 10 common diagnoses, including urinary tract and upper respiratory infections. More than 40% of patients seeking care at retail pharmacy clinics are 18 to 44 years of age, and less than 25% of this group have a primary care provider.¹¹ These clinics have shorter wait times and limited out-of-pocket costs, and they are more convenient. In a study of adults visiting these clinics for vaccination, 30% did so during evening, weekend, and holiday hours, when traditional doctors’ offices are closed.¹²

Telemedicine’s foothold

Telemedicine has also taken a foothold in healthcare. Initially used for episodic illnesses, there is now growing acceptance of telemedicine for management of chronic physical and mental health problems. Accessibility to a doctor via a mobile device while at home has proven to be helpful to young, elderly, and minority patients living in rural areas,¹³ although reimbursement and legal issues continue to constrain its growth.¹⁴ Telemedicine is predicted to grow by nearly 15% from now to 2025, especially in North America and Europe, where technology has kept pace and government initiatives are encouraging its advancement.¹⁵

The American College of Physicians has published recommendations on how best to use telemedicine, especially when there is already an established patient-physician relationship. Telemedicine can bridge the divide for those who lack access to care because of geographic constraints or who cannot afford a regular doctor’s office appointment.¹⁶ It can also allow healthcare “extenders” like social workers, nutritionists, pharmacists, and nurses to work collaboratively with the primary care physician to improve patient education and outcomes.¹⁷

Wearable devices

The wearable device market continues to expand, in large part due to the increased availability and utilization of mobile technology. These gadgets can record steps, sleep, and heart rate. Consumer fitness trackers can give patients insight into their activity levels and encourage them to modify their behavior, ie, get up and move around more.¹⁷ The Deloitte Center for Health Solutions survey in 2018 showed that 62% of millennials use consumer fitness trackers to help meet their wellness goals, compared with 16% of seniors and 25% of baby boomers.¹⁸ There are few studies showing that these devices improve overall health promotion or decrease healthcare costs,^17,19 but research is ongoing.

And the “generation gap” in technology’s uptake is slowly closing: 81% of American adults own a smartphone, and the rate in people over age 50 increased from 53% in 2015 to 67% in 2018.²⁰ By comparison, 92% of millennials own a smartphone.¹

Smartphone apps

A 2015 survey of more than 1,600 US adults found that 58% had downloaded an application to their smartphone to track their health needs, with 41% using more than 5 health-related apps; the most commonly downloaded apps tracked physical activity, food intake, exercise programs or weight loss progress.²¹

Users of mobile health apps are generally younger and more highly educated than nonusers.²² However, baby boomers are willing to try mobile health apps if the apps are intuitive, accessible, and effective; this is important, especially since this group accounts for more than 20% of US healthcare expenditures.²³ Engaging and empowering baby boomers to use this technology may allow them to remain independent, live healthier, and avoid unnecessary office visits, thus decreasing strain on the limited healthcare workforce.²³

Physicians and physician educators should be aware of this generational shift. Millennial-aged doctors will continue to embrace technology to achieve their work-life balance in order to avoid burnout and maintain robust primary care practices whether in the office or outside of it.

Medical school curricula

Medical schools need to adjust their curricula to prepare the next generation of physicians to engage with these new healthcare delivery models and technology. Practicing telemedicine, assessing mobile app safety and utility, and effectively integrating data from patient-specific devices represent a new skill set that is considerably different from the typical face-to-face encounters learners experience today.

Recognizing this, more than 50% of medical schools have added telemedicine and digital health to the curriculum,²⁴ with suggestions to include telemedicine-related content in the Accreditation Council for Graduate Medical Education core competencies.²⁵

Improving the electronic medical record

Maximizing the efficiency of electronic medical records will also be important because physicians currently spend more than 50% of their workday on documentation and administrative tasks; for every 1 hour of patient contact, physicians spend 2 hours in front of the electronic medical record.²⁶ End-users (doctors, nurses, pharmacists, scribes) should interact or engage with developers of electronic medical record systems to promote platforms that enhance workflow, increase connectivity to mobile apps, foster team collaboration, and provide consistency in patient safety and privacy.²⁷

Early and continuous education on use of the electronic medical record should be routine, as proficiency improves work-life balance, physician job satisfaction, and patient care by reducing after-hours note completion and in-box tasks leading to burnout.²⁸

Technology-enabled primary care

Technology-enabled healthcare is here to stay and will continue to evolve, incorporating telehealth, smartphones, mobile apps, in-home and wearable devices, and online video communication.¹⁷ Clinicians will need to be adept at working with these technologies to advance quality care in population health. It will require clinician training and professional development, advances in technology, and revised reimbursement policies.¹⁷ But despite the increased use of mobile apps, there remain concerns about the possible dangers associated with their use, including breaches in confidentiality, conflicts of interest, and lack of professional medical involvement and evidence in their design.²⁹

THE IMPORTANCE OF BEING SAVVY

There is a growing need for primary care providers to be technologically savvy and readily accessible via e-mail, healthcare portals, or in the office to keep up with the generational shifts and expectations occurring in this decade. Healthcare systems should have the right infrastructure in place, including efficient Web platforms to support telemedicine or to synchronize digital tracking devices, as well as a trained workforce to understand and implement these revolutionary changes into everyday practice. Educators will need to provide training in these changing platforms to medical students and residents. Primary care will evolve to redefine its role within the context of these emerging technologies¹⁷ and to adjust to these market demands in order to stay relevant.

Technology has infiltrated all parts of our everyday lives, including healthcare. Patients can make and cancel appointments, send e-mails directly to their physician, and request prescription refills—all through electronic portals. Physicians and healthcare providers must adjust to these changes in care-delivery models. Primary care providers must also adapt as younger generations seek access for their health needs outside of the doctor’s office.

See related editorial

And so it is with everyday life. Online banking and bill-paying is common. Groceries can be bought online and delivered within an hour. Connecting with family or friends around the world can be done with the touch of a button. In the United States, 90% of adults own a cell phone; many do not have a land line. More than 65% of adult Americans under age 75 own a smart phone, and 50% of the public owns a tablet computer.¹

DRIVERS OF CHANGE: THE MILLENNIALS

The development and use of new technology is driven by the coming of age of the youngest adult population, ie, “Generation Y” or millennials, ie, persons born between 1981 and 1996.² They now account for 28% of the US adult population, surpassing the baby boomers (born 1946 to 1964) by 8 million.³

Millennials have grown up with the World Wide Web at their fingertips. They are accustomed to an environment full of choices and unlimited, instantly available information.⁴

Millennials are cost-conscious shoppers who desire convenience and quick access. As patients, they often forgo traditional doctor’s office visits, turning instead to the Internet for quick answers to their questions in blogs and websites.⁵ A Kaiser Family Foundation survey in 2018 indicated that only a quarter of millennials see a primary care physician for healthcare needs.⁶

The shortage of primary care physicians

There are several reasons for this. Primary care physicians are in short supply, more Americans have insurance after the passage of the Affordable Care Act, and more physicians are working part-time or retiring earlier than in previous generations. There will be a continued shortfall of 15,000 to 49,000 full-time-equivalent primary care physicians by 2030.⁷ A survey of 15 large metropolitan markets found that the average wait time for a primary care new patient appointment increased to 24.1 days—a 30% increase from 2014. In some cities, the wait time can be 3 to 4 months.⁸

Older patients of the baby-boomer generation tend to discuss medical issues with their primary care physician, often relying on their feedback to improve their health lifestyle choices.⁹ Baby boomers who are Medicare subscribers tend to see their regular doctor at least once or twice a year¹⁰; trust is built with this continuity in care.

The rise of pharmacy clinics

But the shortage of primary care physicians and the desire of younger patients for immediate access to care have fueled the growth of new options for access, such as retail clinics in large pharmacies. These clinics are mostly found in the South and Midwest and are staffed by nurse practitioners,¹¹ and 90% of their billing falls under 10 common diagnoses, including urinary tract and upper respiratory infections. More than 40% of patients seeking care at retail pharmacy clinics are 18 to 44 years of age, and less than 25% of this group have a primary care provider.¹¹ These clinics have shorter wait times and limited out-of-pocket costs, and they are more convenient. In a study of adults visiting these clinics for vaccination, 30% did so during evening, weekend, and holiday hours, when traditional doctors’ offices are closed.¹²

Telemedicine’s foothold

Telemedicine has also taken a foothold in healthcare. Initially used for episodic illnesses, there is now growing acceptance of telemedicine for management of chronic physical and mental health problems. Accessibility to a doctor via a mobile device while at home has proven to be helpful to young, elderly, and minority patients living in rural areas,¹³ although reimbursement and legal issues continue to constrain its growth.¹⁴ Telemedicine is predicted to grow by nearly 15% from now to 2025, especially in North America and Europe, where technology has kept pace and government initiatives are encouraging its advancement.¹⁵

The American College of Physicians has published recommendations on how best to use telemedicine, especially when there is already an established patient-physician relationship. Telemedicine can bridge the divide for those who lack access to care because of geographic constraints or who cannot afford a regular doctor’s office appointment.¹⁶ It can also allow healthcare “extenders” like social workers, nutritionists, pharmacists, and nurses to work collaboratively with the primary care physician to improve patient education and outcomes.¹⁷

Wearable devices

The wearable device market continues to expand, in large part due to the increased availability and utilization of mobile technology. These gadgets can record steps, sleep, and heart rate. Consumer fitness trackers can give patients insight into their activity levels and encourage them to modify their behavior, ie, get up and move around more.¹⁷ The Deloitte Center for Health Solutions survey in 2018 showed that 62% of millennials use consumer fitness trackers to help meet their wellness goals, compared with 16% of seniors and 25% of baby boomers.¹⁸ There are few studies showing that these devices improve overall health promotion or decrease healthcare costs,^17,19 but research is ongoing.

And the “generation gap” in technology’s uptake is slowly closing: 81% of American adults own a smartphone, and the rate in people over age 50 increased from 53% in 2015 to 67% in 2018.²⁰ By comparison, 92% of millennials own a smartphone.¹

Smartphone apps

A 2015 survey of more than 1,600 US adults found that 58% had downloaded an application to their smartphone to track their health needs, with 41% using more than 5 health-related apps; the most commonly downloaded apps tracked physical activity, food intake, exercise programs or weight loss progress.²¹

Users of mobile health apps are generally younger and more highly educated than nonusers.²² However, baby boomers are willing to try mobile health apps if the apps are intuitive, accessible, and effective; this is important, especially since this group accounts for more than 20% of US healthcare expenditures.²³ Engaging and empowering baby boomers to use this technology may allow them to remain independent, live healthier, and avoid unnecessary office visits, thus decreasing strain on the limited healthcare workforce.²³

Physicians and physician educators should be aware of this generational shift. Millennial-aged doctors will continue to embrace technology to achieve their work-life balance in order to avoid burnout and maintain robust primary care practices whether in the office or outside of it.

Medical school curricula

Medical schools need to adjust their curricula to prepare the next generation of physicians to engage with these new healthcare delivery models and technology. Practicing telemedicine, assessing mobile app safety and utility, and effectively integrating data from patient-specific devices represent a new skill set that is considerably different from the typical face-to-face encounters learners experience today.

Recognizing this, more than 50% of medical schools have added telemedicine and digital health to the curriculum,²⁴ with suggestions to include telemedicine-related content in the Accreditation Council for Graduate Medical Education core competencies.²⁵

Improving the electronic medical record

Maximizing the efficiency of electronic medical records will also be important because physicians currently spend more than 50% of their workday on documentation and administrative tasks; for every 1 hour of patient contact, physicians spend 2 hours in front of the electronic medical record.²⁶ End-users (doctors, nurses, pharmacists, scribes) should interact or engage with developers of electronic medical record systems to promote platforms that enhance workflow, increase connectivity to mobile apps, foster team collaboration, and provide consistency in patient safety and privacy.²⁷

Early and continuous education on use of the electronic medical record should be routine, as proficiency improves work-life balance, physician job satisfaction, and patient care by reducing after-hours note completion and in-box tasks leading to burnout.²⁸

Technology-enabled primary care

Technology-enabled healthcare is here to stay and will continue to evolve, incorporating telehealth, smartphones, mobile apps, in-home and wearable devices, and online video communication.¹⁷ Clinicians will need to be adept at working with these technologies to advance quality care in population health. It will require clinician training and professional development, advances in technology, and revised reimbursement policies.¹⁷ But despite the increased use of mobile apps, there remain concerns about the possible dangers associated with their use, including breaches in confidentiality, conflicts of interest, and lack of professional medical involvement and evidence in their design.²⁹

THE IMPORTANCE OF BEING SAVVY

There is a growing need for primary care providers to be technologically savvy and readily accessible via e-mail, healthcare portals, or in the office to keep up with the generational shifts and expectations occurring in this decade. Healthcare systems should have the right infrastructure in place, including efficient Web platforms to support telemedicine or to synchronize digital tracking devices, as well as a trained workforce to understand and implement these revolutionary changes into everyday practice. Educators will need to provide training in these changing platforms to medical students and residents. Primary care will evolve to redefine its role within the context of these emerging technologies¹⁷ and to adjust to these market demands in order to stay relevant.

Aspirin (acetylsalicylic acid) and its progenitors are valuable medications with a history spanning at least 4 millennia. An enormous number of patients take aspirin for a variety of reasons, and managing their therapy around the time of surgery can be challenging, as Drs. Prabhakaran and Whinney discuss in this issue.¹ Even after 4,000 years, we are still learning about these remarkable drugs.

See related article

LEARNING WHAT SALICYLATES ARE

LEARNING (AND IGNORING) WHAT ASPIRIN CAN DO

In the 1940s, a general practitioner in California named Lawrence Craven recognized that many of his post-tonsillectomy patients had to be hospitalized for bleeding after he started recommending they use aspirin-containing chewing gum for pain relief.⁴ Under the then-debated hypothesis that myocardial infarction (MI) involves thrombosis, he recommended that adult men should take aspirin daily. He believed that women had lower rates of MI because they were more likely to take aspirin, something that men did not view as a “masculine” thing to do.

In a series of letters in journals such as the Mississippi Valley Medical Journal,⁵ Craven reported his observations of very low rates of MI and no strokes in aspirin users. Given the nonrigorous nature of his research and the obscure journals in which he published, his findings languished for many years. Ironically, he died of an MI in 1957.

LEARNING HOW ASPIRIN WORKS (AND A FEW OTHER THINGS)

The history of aspirin research illustrates how the fields of hemostasis and inflammation are now linked.

In the late 1960s, Weiss et al⁶ reported that aspirin rapidly and irreversibly inhibits platelet aggregation. In parallel, using biological assays in work that eventually led to the Nobel Prize, Vane⁷ discovered that inflammation involves the de novo synthesis of prostaglandins and that aspirin directly inhibits this synthesis. Further work connecting these lines of investigation led us to understand that platelet aggregation is enhanced by the prostaglandin derivative thromboxane A2, produced by cyclooxygenase-1, and that aspirin irreversibly inhibits this enzyme by acetylation.

LEARNING WHEN TO USE ASPIRIN

After decades of research ranging from the Physicians’ Health Study to well-named trials such as ARRIVE, ASCEND, and ASPREE, we now know that taking daily low doses of aspirin for primary prevention can reduce the risk of cardiovascular events and may reduce the risk of colorectal cancer—but at the cost of an increased risk of bleeding.⁸

Which patients will gain the most benefit and incur the least risk is still debated. What is certain, however, is that aspirin has an important role in acute coronary syndromes, secondary prevention of MI and stroke, and prevention of thrombosis after coronary stent placement. In the perioperative setting, we are learning that aspirin may benefit patients with myocardial injury after noncardiac surgery, a recently described clinical entity associated with surprisingly high mortality rates.^9,10

The perioperative period is a dangerous time—surgical stress, hypercoagulability, inflammation, pain, and hemodynamic changes predispose to plaque rupture and supply-demand imbalance. It is therefore logical to hope aspirin would provide protection for at-risk patients in this context.

Unfortunately, results from the second Perioperative Ischemic Evaluation trial have dampened enthusiasm.¹¹ Aspirin has now joined clonidine and beta-blockers on the list of interventions that probably do not reduce perioperative cardiovascular mortality rates. Other than protecting against stent thrombosis, aspirin’s main perioperative effect is to increase bleeding. Consequently, some surgical procedures mandate withdrawal of aspirin.

WHAT WE STILL NEED TO LEARN

Over the years, we have learned the broad outlines of using aspirin to prevent and treat cardiovascular disease, to relieve pain and inflammation (its original purpose), and to prevent stent thrombosis. 

However, many details remain to be filled in. We need to better define groups who should and should not take aspirin for primary prevention. We also need to understand aspirin’s role in cancer chemoprevention, to find better ways to mitigate its undesirable effects, and to study its role in treating myocardial injury after noncardiac surgery.

Finally, we need to determine which (if any) patients without coronary stents will benefit from continuing their aspirin perioperatively or even initiating aspirin therapy preoperatively.

Will humanity still be using salicylates 4,000 years from now? Probably not. But what we have learned and will continue to learn from this remarkable group of medications will certainly inform new and better therapies in the years to come.

Aspirin (acetylsalicylic acid) and its progenitors are valuable medications with a history spanning at least 4 millennia. An enormous number of patients take aspirin for a variety of reasons, and managing their therapy around the time of surgery can be challenging, as Drs. Prabhakaran and Whinney discuss in this issue.¹ Even after 4,000 years, we are still learning about these remarkable drugs.

See related article

LEARNING WHAT SALICYLATES ARE

LEARNING (AND IGNORING) WHAT ASPIRIN CAN DO

In the 1940s, a general practitioner in California named Lawrence Craven recognized that many of his post-tonsillectomy patients had to be hospitalized for bleeding after he started recommending they use aspirin-containing chewing gum for pain relief.⁴ Under the then-debated hypothesis that myocardial infarction (MI) involves thrombosis, he recommended that adult men should take aspirin daily. He believed that women had lower rates of MI because they were more likely to take aspirin, something that men did not view as a “masculine” thing to do.

In a series of letters in journals such as the Mississippi Valley Medical Journal,⁵ Craven reported his observations of very low rates of MI and no strokes in aspirin users. Given the nonrigorous nature of his research and the obscure journals in which he published, his findings languished for many years. Ironically, he died of an MI in 1957.

LEARNING HOW ASPIRIN WORKS (AND A FEW OTHER THINGS)

The history of aspirin research illustrates how the fields of hemostasis and inflammation are now linked.

In the late 1960s, Weiss et al⁶ reported that aspirin rapidly and irreversibly inhibits platelet aggregation. In parallel, using biological assays in work that eventually led to the Nobel Prize, Vane⁷ discovered that inflammation involves the de novo synthesis of prostaglandins and that aspirin directly inhibits this synthesis. Further work connecting these lines of investigation led us to understand that platelet aggregation is enhanced by the prostaglandin derivative thromboxane A2, produced by cyclooxygenase-1, and that aspirin irreversibly inhibits this enzyme by acetylation.

LEARNING WHEN TO USE ASPIRIN

After decades of research ranging from the Physicians’ Health Study to well-named trials such as ARRIVE, ASCEND, and ASPREE, we now know that taking daily low doses of aspirin for primary prevention can reduce the risk of cardiovascular events and may reduce the risk of colorectal cancer—but at the cost of an increased risk of bleeding.⁸

Which patients will gain the most benefit and incur the least risk is still debated. What is certain, however, is that aspirin has an important role in acute coronary syndromes, secondary prevention of MI and stroke, and prevention of thrombosis after coronary stent placement. In the perioperative setting, we are learning that aspirin may benefit patients with myocardial injury after noncardiac surgery, a recently described clinical entity associated with surprisingly high mortality rates.^9,10

The perioperative period is a dangerous time—surgical stress, hypercoagulability, inflammation, pain, and hemodynamic changes predispose to plaque rupture and supply-demand imbalance. It is therefore logical to hope aspirin would provide protection for at-risk patients in this context.

Unfortunately, results from the second Perioperative Ischemic Evaluation trial have dampened enthusiasm.¹¹ Aspirin has now joined clonidine and beta-blockers on the list of interventions that probably do not reduce perioperative cardiovascular mortality rates. Other than protecting against stent thrombosis, aspirin’s main perioperative effect is to increase bleeding. Consequently, some surgical procedures mandate withdrawal of aspirin.

WHAT WE STILL NEED TO LEARN

Over the years, we have learned the broad outlines of using aspirin to prevent and treat cardiovascular disease, to relieve pain and inflammation (its original purpose), and to prevent stent thrombosis. 

However, many details remain to be filled in. We need to better define groups who should and should not take aspirin for primary prevention. We also need to understand aspirin’s role in cancer chemoprevention, to find better ways to mitigate its undesirable effects, and to study its role in treating myocardial injury after noncardiac surgery.

Finally, we need to determine which (if any) patients without coronary stents will benefit from continuing their aspirin perioperatively or even initiating aspirin therapy preoperatively.

Will humanity still be using salicylates 4,000 years from now? Probably not. But what we have learned and will continue to learn from this remarkable group of medications will certainly inform new and better therapies in the years to come.

Aspirin (acetylsalicylic acid) and its progenitors are valuable medications with a history spanning at least 4 millennia. An enormous number of patients take aspirin for a variety of reasons, and managing their therapy around the time of surgery can be challenging, as Drs. Prabhakaran and Whinney discuss in this issue.¹ Even after 4,000 years, we are still learning about these remarkable drugs.

See related article

LEARNING WHAT SALICYLATES ARE

LEARNING (AND IGNORING) WHAT ASPIRIN CAN DO

In the 1940s, a general practitioner in California named Lawrence Craven recognized that many of his post-tonsillectomy patients had to be hospitalized for bleeding after he started recommending they use aspirin-containing chewing gum for pain relief.⁴ Under the then-debated hypothesis that myocardial infarction (MI) involves thrombosis, he recommended that adult men should take aspirin daily. He believed that women had lower rates of MI because they were more likely to take aspirin, something that men did not view as a “masculine” thing to do.

In a series of letters in journals such as the Mississippi Valley Medical Journal,⁵ Craven reported his observations of very low rates of MI and no strokes in aspirin users. Given the nonrigorous nature of his research and the obscure journals in which he published, his findings languished for many years. Ironically, he died of an MI in 1957.

LEARNING HOW ASPIRIN WORKS (AND A FEW OTHER THINGS)

The history of aspirin research illustrates how the fields of hemostasis and inflammation are now linked.

In the late 1960s, Weiss et al⁶ reported that aspirin rapidly and irreversibly inhibits platelet aggregation. In parallel, using biological assays in work that eventually led to the Nobel Prize, Vane⁷ discovered that inflammation involves the de novo synthesis of prostaglandins and that aspirin directly inhibits this synthesis. Further work connecting these lines of investigation led us to understand that platelet aggregation is enhanced by the prostaglandin derivative thromboxane A2, produced by cyclooxygenase-1, and that aspirin irreversibly inhibits this enzyme by acetylation.

LEARNING WHEN TO USE ASPIRIN

After decades of research ranging from the Physicians’ Health Study to well-named trials such as ARRIVE, ASCEND, and ASPREE, we now know that taking daily low doses of aspirin for primary prevention can reduce the risk of cardiovascular events and may reduce the risk of colorectal cancer—but at the cost of an increased risk of bleeding.⁸

Which patients will gain the most benefit and incur the least risk is still debated. What is certain, however, is that aspirin has an important role in acute coronary syndromes, secondary prevention of MI and stroke, and prevention of thrombosis after coronary stent placement. In the perioperative setting, we are learning that aspirin may benefit patients with myocardial injury after noncardiac surgery, a recently described clinical entity associated with surprisingly high mortality rates.^9,10

The perioperative period is a dangerous time—surgical stress, hypercoagulability, inflammation, pain, and hemodynamic changes predispose to plaque rupture and supply-demand imbalance. It is therefore logical to hope aspirin would provide protection for at-risk patients in this context.

Unfortunately, results from the second Perioperative Ischemic Evaluation trial have dampened enthusiasm.¹¹ Aspirin has now joined clonidine and beta-blockers on the list of interventions that probably do not reduce perioperative cardiovascular mortality rates. Other than protecting against stent thrombosis, aspirin’s main perioperative effect is to increase bleeding. Consequently, some surgical procedures mandate withdrawal of aspirin.

WHAT WE STILL NEED TO LEARN

Over the years, we have learned the broad outlines of using aspirin to prevent and treat cardiovascular disease, to relieve pain and inflammation (its original purpose), and to prevent stent thrombosis. 

However, many details remain to be filled in. We need to better define groups who should and should not take aspirin for primary prevention. We also need to understand aspirin’s role in cancer chemoprevention, to find better ways to mitigate its undesirable effects, and to study its role in treating myocardial injury after noncardiac surgery.

Finally, we need to determine which (if any) patients without coronary stents will benefit from continuing their aspirin perioperatively or even initiating aspirin therapy preoperatively.

Will humanity still be using salicylates 4,000 years from now? Probably not. But what we have learned and will continue to learn from this remarkable group of medications will certainly inform new and better therapies in the years to come.

“My dear, here we must run as fast as we can, just to stay in place. And if you wish to go anywhere you must run twice as fast as that.”
—Lewis Carroll
Alice’s Adventures in Wonderland

The future of primary care internal medicine physicians is uncertain. According to a 2018 survey of internal medicine residents conducted by the American College of Physicians, only 11% were considering primary care as a career path.¹ In 1998, that number was 54%.²

See related commentary

Possible reasons are many:

• Lower pay compared with subspecialists in a pay system that rewards procedural competency over mental effort
• Work schedules less flexible than in other specialties (eg, hospital medicine practitioners may have 1 week on and 1 week off)
• Perceived lack of respect
• Increasing regulatory and record-keeping burdens
• Tyranny of 15- to 20-minute appointments (irrespective of patient complexity)
• Scope-of-practice concerns as other providers seek primary care equivalency status (eg, pharmacists, walk-in clinics, advanced practice providers, telemedicine providers).

The result is a projected shortage of primary care physicians of 21,100 to 55,200 by 2030, according to a 2019 report by the Association of American Medical Colleges,³ despite an expected growth in advanced practice providers in primary care such as nurse practitioners and physician assistants.

A practical result of this shortage will be even less patient access to primary care physicians. A 2017 national survey found that the average wait time for a new patient-physician appointment has already increased by 30% since 2014.⁴ The wait time to see a primary care physician varied between 29 days in major metropolitan areas (up 50% from 2014) and 56 days in mid-sized markets. The longest waits by market size were 109 days for new patients in Boston, MA, and 122 days for those living in Albany, NY.

What are the implications?

In this issue, Pravia and Diaz⁵ make the case that primary care providers must adapt their practices to meet the needs of younger generations by increasing their use of technology. We agree that telemedicine, wearable medical devices, and enhanced patient communication through the electronic medical record (EMR) are here to stay and should be embraced.

However, we have seen the challenges of adopting technologic advances without first making an adjustment to the volume-driven patient schedule. For such advances to be successfully integrated into a clinical practice, it is vital to be cognizant of the current challenges encountered in primary care internal medicine.

UNIQUE BURDENS ON PRIMARY CARE

In addition to the stress of addressing multiple complex medical problems within a short time, evaluating multiple medical problems often leads to increases in results to review, forms to complete, and calls to patients. Even treatment plans initiated by specialists are often deferred to primary care providers for dosing adjustments, follow-up laboratory testing, and monitoring.

Moreover, patients often seek a second opinion from their primary care provider regarding care provided by subspecialists, as they consider their primary care provider to be the doctor who knows them best. And though it can be personally gratifying to be considered a trusted partner in the patient’s care, these requests often result in additional phone calls to the office or another thing to address within a complex visit.

A large in-box can be daunting in the setting of increased EMR demands. Whether you have difficulty putting in basic orders or are an advanced user, each upgrade can make you feel like you’re using the EMR for the first time. This is a problem for all specialties, but in primary care, one is addressing a large spectrum of concerns, so there is less opportunity to use standardized templates that can help buffer the problem.

A study of primary care providers found that nearly 75% of each patient visit was spent on activities other than face-to-face patient care, including working with the EMR.⁶ Similarly, a study using in-office observations and after-hours diaries found that physicians from various specialties spend 2 hours on administrative duties for each hour that they see patients in the office, followed by an additional 1 to 2 hours of work after clinic, mostly devoted to the EMR.⁷

Clinicians using scribes to help with record-keeping duties often need to see more patients to compensate for the cost. Adding 2 to 3 patients to a daily schedule usually means adding more medical conditions to manage, with an exponential increase in testing and in-box burden.

The additional burden this coverage creates in primary care is often not well understood by those in other specialties.

Another burden unique to primary care providers is the nearly continuous publication of guidelines that are often confusing and discrepant. Because many high-impact guidelines represent expert consensus or evidence from specialist perspectives, they may not fit the primary care model or values: eg, primary care guidelines tend to place more emphasis on harms associated with screening.

Screening for breast and prostate cancers is a prime example. Both require shared decision-making based on patient preferences and values.^8,9 Detailed discussions about preventive screening can be difficult to achieve within the context of a medical visit owing to time limitations, especially if other medical conditions being addressed are equally controversial, such as blood pressure target goals. A decade ago, one could easily declare, “It’s time for your annual PSA test,” and move on to other concerns. Given the changing evidence, an informed patient is now likely to question whether this test should be done, how often it should be done, and whether a prostate examination should also be included.

The push toward population health has raised questions about the value of a preventive wellness visit, especially in healthy patients.^10,11 Arguments against the annual physical do not account for the value of these visits, which provide the opportunity to have time-intensive shared decision-making conversations and build a trusting patient-physician relationship. The value of the annual physical is not simply to do examinations for which there is limited evidence; it is a time for us to get to know our patients, to update their preventive needs (and the medical record), and to discuss which screening tests they may safely forgo to avoid unnecessary false-positives, leading to excess cost and harm.

This trusting relationship, developed over years, is likely to save both the patient and the healthcare system significant money. For example, it enables us to reassure patients that an antibiotic is not needed for their upper respiratory infection, to encourage them to try a dietary change before proceeding with computed tomography for their abdominal pain, or to discourage them from inappropriately aggressive screening tests that may result in overtesting or overdiagnosis.

Unfortunately, it is nearly impossible to accurately quantify these substantial benefits to the healthcare system and patients. And there is a real potential that recommendations against the annual physical may eventually affect future reimbursement, which would add to the time pressures of an already overburdened primary care workforce.

DO PRIMARY CARE PHYSICIANS MAKE A DIFFERENCE?

As medicine and technology evolve, patients have more ways to access care. However, the Internet also provides patients with access to more conflicting information than ever before, making it even more important for clinicians, as trusted partners in their patients’ health, to help patients navigate the waters of information and misinformation.

Studies have shown that having a primary care physician is associated with a longer life span, higher likelihood of reporting good health, and similar clinical outcomes for common conditions such as diabetes and hypertension when compared with subspecialty care, but at a lower cost and with less resource utilization.^12,13 In a study published in 2019, Basu et al¹² found that for every 10 additional primary care physicians per 100,000 population, there was an associated 51.5-day increase in life expectancy, compared with a 19.2-day increase for specialists. Cost savings also occur. Similarly, a review by the American College of Physicians¹³ found that each additional primary care physician per 10,000 population in a US state increased the state’s health quality ranking by more than 10 spots and reduced their overall spending per Medicare beneficiary. In contrast, an increase of 1 specialist per 10,000 population was linked to a 9-spot decrease in health-quality ranking and an increase in spending.

WHY CHOOSE PRIMARY CARE?

As medical students, we fell in love with internal medicine because of the complexity and intellectual challenges of working through a diagnostic dilemma. There is a certain excitement in not knowing what type of patients will show up that day.

Primary care’s focus on continuity and developing long-standing relationships with patients and their families is largely unmatched in the subspecialty field. It is satisfying to have a general knowledge of the human body, and the central vantage point with which to weigh different subspecialty recommendations. We feel such sentiments are common to those interested in primary care, but sadly, we believe these are not enough to sustain the future of primary care internal medicine.

IS THE FUTURE BRIGHT OR BLEAK?

Primary care internists must resist the call to “run twice as fast.” Instead, we need to look for ways where our unique skill sets can benefit the health of our nation while attracting students to internal medicine primary care. The following are potential areas for moving forward.

The aging of America

The US Census Bureau projects that by the year 2035, older adults will outnumber children for the first time in US history, and by the year 2060, nearly 25% of the US population will be 65 or older.¹⁴ The rise of the geriatric patient and the need for comprehensive care will create a continued demand for primary care internists. There certainly aren’t enough geriatricians to meet this need, and primary care internists are well trained to fill this gap.

The rise of the team approach

As we are learning, complex disease management benefits from a team approach. The rise of new models of care delivery such as accountable care organizations and patient-centered medical homes echo this reality. The day of a single provider “doing it all” is fading.

The focus on population health in these models has given rise to multidisciplinary teams—including physicians, nurses, advanced practice providers, social workers, and pharmacists—whose function is to help manage and improve the physical, mental, and social care of patients, often in a capitated payment system. The primary care internist can play a key role in leading these teams, and such partnerships may help lessen reliance on the current primary care hustle of 15- to 20-minute visits. In such models, it is possible that the internist will need to see each patient only once or twice a year, in a longer appointment slot, instead of 4 to 6 times per year in rushed visits. The hope is that this will encourage the relationship-building that is so important in primary care and reduce the time and volume scheduling burdens seen in the current fee-for-service system.

The joy of digging into a diagnostic dilemma has been a hallmark of internal medicine. The rise of technology should enable primary care internists to increase their diagnostic capabilities in the office without an overreliance on subspecialists.

Examples of technology that may benefit primary care are artificial intelligence with real-time diagnostic support, precision medicine, and office-based point-of-care ultrasonography.^15–17 By increasing the diagnostic power of an office-based visit, we hope that the prestige factor of primary care medicine will increase as internists incorporate such advances into their clinics—not to mention the joy of making an appropriate diagnosis in real time.

Reimbursement and the value of time

Time is a valuable commodity for primary care internists. Unfortunately, there seems to be less of it in today’s practice. Gone are the days when we could go to the doctors’ dining room to decompress, chat, and break bread with colleagues. Today, we are more likely to be found in front of our computers over lunch answering patients’ messages. Time is also a key reason that physicians express frustration with issues such as prior authorizations for medications. These tasks routinely take time away from what is valuable—the care of our patients.

The rise of innovative practice models such as direct primary care and concierge medicine can be seen as a market response to the frustrations of increasing regulatory complexity, billing hassles, and lack of time. However, some have cautioned that such models have the potential to worsen healthcare disparities because patients pay out of pocket for some or all of their care in these practices.¹⁸

Interestingly, the Centers for Medicare and Medicaid Services recently unveiled new voluntary payment models for primary care that go into effect in 2020. These models may allow for increased practice innovation. The 2 proposed options are Primary Care First (designed for small primary care practices) and Direct Contracting (aimed at larger practices). These models are designed to provide a predictable up-front payment stream (a set payment per beneficiary) to the primary care practice. Hopefully, these options will move primary care away from the current fee-for-service, multiple-patient-visit model.

The primary care model allows practices to “assume financial risk in exchange for reduced administrative burden and performance-based payments” and “introduces new, higher payments for practices that care for complex, chronically ill patients.”¹⁹ It is too soon to know the effectiveness of such models, but any reimbursement innovation should be met with cautious optimism.

In addition, the Centers for Medicare and Medicaid Services has recently moved to reduce requirements for documentation. For example, one can fully bill with a medical student note without needing to repeat visit notes.^20,21 Such changes should decrease the time needed to document the EMR and free up more time to care for patients.

A CALL TO ACTION

The national shortage of primary care providers points to the fact that this is a difficult career, and one that remains undervalued. One step we need to take is to protect the time we have with patients. It is doubtful that seeing a greater number of sicker patients each day, in addition to the responsibilities of proactive population-based care (“panel management”), will attract younger generations of physicians to fill this void, no matter what technology we adopt.

Keys to facilitating this change include understanding the value of primary care physicians, decreasing the burden of documentation, facilitating team-care options to support them, and expanding diagnostic tools available to use within primary care. If we don’t demand change, who will be there to take care of us when we grow old?

“My dear, here we must run as fast as we can, just to stay in place. And if you wish to go anywhere you must run twice as fast as that.”
—Lewis Carroll
Alice’s Adventures in Wonderland

The future of primary care internal medicine physicians is uncertain. According to a 2018 survey of internal medicine residents conducted by the American College of Physicians, only 11% were considering primary care as a career path.¹ In 1998, that number was 54%.²

See related commentary

Possible reasons are many:

• Lower pay compared with subspecialists in a pay system that rewards procedural competency over mental effort
• Work schedules less flexible than in other specialties (eg, hospital medicine practitioners may have 1 week on and 1 week off)
• Perceived lack of respect
• Increasing regulatory and record-keeping burdens
• Tyranny of 15- to 20-minute appointments (irrespective of patient complexity)
• Scope-of-practice concerns as other providers seek primary care equivalency status (eg, pharmacists, walk-in clinics, advanced practice providers, telemedicine providers).

The result is a projected shortage of primary care physicians of 21,100 to 55,200 by 2030, according to a 2019 report by the Association of American Medical Colleges,³ despite an expected growth in advanced practice providers in primary care such as nurse practitioners and physician assistants.

A practical result of this shortage will be even less patient access to primary care physicians. A 2017 national survey found that the average wait time for a new patient-physician appointment has already increased by 30% since 2014.⁴ The wait time to see a primary care physician varied between 29 days in major metropolitan areas (up 50% from 2014) and 56 days in mid-sized markets. The longest waits by market size were 109 days for new patients in Boston, MA, and 122 days for those living in Albany, NY.

What are the implications?

In this issue, Pravia and Diaz⁵ make the case that primary care providers must adapt their practices to meet the needs of younger generations by increasing their use of technology. We agree that telemedicine, wearable medical devices, and enhanced patient communication through the electronic medical record (EMR) are here to stay and should be embraced.

However, we have seen the challenges of adopting technologic advances without first making an adjustment to the volume-driven patient schedule. For such advances to be successfully integrated into a clinical practice, it is vital to be cognizant of the current challenges encountered in primary care internal medicine.

UNIQUE BURDENS ON PRIMARY CARE

In addition to the stress of addressing multiple complex medical problems within a short time, evaluating multiple medical problems often leads to increases in results to review, forms to complete, and calls to patients. Even treatment plans initiated by specialists are often deferred to primary care providers for dosing adjustments, follow-up laboratory testing, and monitoring.

Moreover, patients often seek a second opinion from their primary care provider regarding care provided by subspecialists, as they consider their primary care provider to be the doctor who knows them best. And though it can be personally gratifying to be considered a trusted partner in the patient’s care, these requests often result in additional phone calls to the office or another thing to address within a complex visit.

A large in-box can be daunting in the setting of increased EMR demands. Whether you have difficulty putting in basic orders or are an advanced user, each upgrade can make you feel like you’re using the EMR for the first time. This is a problem for all specialties, but in primary care, one is addressing a large spectrum of concerns, so there is less opportunity to use standardized templates that can help buffer the problem.

A study of primary care providers found that nearly 75% of each patient visit was spent on activities other than face-to-face patient care, including working with the EMR.⁶ Similarly, a study using in-office observations and after-hours diaries found that physicians from various specialties spend 2 hours on administrative duties for each hour that they see patients in the office, followed by an additional 1 to 2 hours of work after clinic, mostly devoted to the EMR.⁷

Clinicians using scribes to help with record-keeping duties often need to see more patients to compensate for the cost. Adding 2 to 3 patients to a daily schedule usually means adding more medical conditions to manage, with an exponential increase in testing and in-box burden.

The additional burden this coverage creates in primary care is often not well understood by those in other specialties.

Another burden unique to primary care providers is the nearly continuous publication of guidelines that are often confusing and discrepant. Because many high-impact guidelines represent expert consensus or evidence from specialist perspectives, they may not fit the primary care model or values: eg, primary care guidelines tend to place more emphasis on harms associated with screening.

Screening for breast and prostate cancers is a prime example. Both require shared decision-making based on patient preferences and values.^8,9 Detailed discussions about preventive screening can be difficult to achieve within the context of a medical visit owing to time limitations, especially if other medical conditions being addressed are equally controversial, such as blood pressure target goals. A decade ago, one could easily declare, “It’s time for your annual PSA test,” and move on to other concerns. Given the changing evidence, an informed patient is now likely to question whether this test should be done, how often it should be done, and whether a prostate examination should also be included.

The push toward population health has raised questions about the value of a preventive wellness visit, especially in healthy patients.^10,11 Arguments against the annual physical do not account for the value of these visits, which provide the opportunity to have time-intensive shared decision-making conversations and build a trusting patient-physician relationship. The value of the annual physical is not simply to do examinations for which there is limited evidence; it is a time for us to get to know our patients, to update their preventive needs (and the medical record), and to discuss which screening tests they may safely forgo to avoid unnecessary false-positives, leading to excess cost and harm.

This trusting relationship, developed over years, is likely to save both the patient and the healthcare system significant money. For example, it enables us to reassure patients that an antibiotic is not needed for their upper respiratory infection, to encourage them to try a dietary change before proceeding with computed tomography for their abdominal pain, or to discourage them from inappropriately aggressive screening tests that may result in overtesting or overdiagnosis.

Unfortunately, it is nearly impossible to accurately quantify these substantial benefits to the healthcare system and patients. And there is a real potential that recommendations against the annual physical may eventually affect future reimbursement, which would add to the time pressures of an already overburdened primary care workforce.

DO PRIMARY CARE PHYSICIANS MAKE A DIFFERENCE?

As medicine and technology evolve, patients have more ways to access care. However, the Internet also provides patients with access to more conflicting information than ever before, making it even more important for clinicians, as trusted partners in their patients’ health, to help patients navigate the waters of information and misinformation.

Studies have shown that having a primary care physician is associated with a longer life span, higher likelihood of reporting good health, and similar clinical outcomes for common conditions such as diabetes and hypertension when compared with subspecialty care, but at a lower cost and with less resource utilization.^12,13 In a study published in 2019, Basu et al¹² found that for every 10 additional primary care physicians per 100,000 population, there was an associated 51.5-day increase in life expectancy, compared with a 19.2-day increase for specialists. Cost savings also occur. Similarly, a review by the American College of Physicians¹³ found that each additional primary care physician per 10,000 population in a US state increased the state’s health quality ranking by more than 10 spots and reduced their overall spending per Medicare beneficiary. In contrast, an increase of 1 specialist per 10,000 population was linked to a 9-spot decrease in health-quality ranking and an increase in spending.

WHY CHOOSE PRIMARY CARE?

As medical students, we fell in love with internal medicine because of the complexity and intellectual challenges of working through a diagnostic dilemma. There is a certain excitement in not knowing what type of patients will show up that day.

Primary care’s focus on continuity and developing long-standing relationships with patients and their families is largely unmatched in the subspecialty field. It is satisfying to have a general knowledge of the human body, and the central vantage point with which to weigh different subspecialty recommendations. We feel such sentiments are common to those interested in primary care, but sadly, we believe these are not enough to sustain the future of primary care internal medicine.

IS THE FUTURE BRIGHT OR BLEAK?

Primary care internists must resist the call to “run twice as fast.” Instead, we need to look for ways where our unique skill sets can benefit the health of our nation while attracting students to internal medicine primary care. The following are potential areas for moving forward.

The aging of America

The US Census Bureau projects that by the year 2035, older adults will outnumber children for the first time in US history, and by the year 2060, nearly 25% of the US population will be 65 or older.¹⁴ The rise of the geriatric patient and the need for comprehensive care will create a continued demand for primary care internists. There certainly aren’t enough geriatricians to meet this need, and primary care internists are well trained to fill this gap.

The rise of the team approach

As we are learning, complex disease management benefits from a team approach. The rise of new models of care delivery such as accountable care organizations and patient-centered medical homes echo this reality. The day of a single provider “doing it all” is fading.

The focus on population health in these models has given rise to multidisciplinary teams—including physicians, nurses, advanced practice providers, social workers, and pharmacists—whose function is to help manage and improve the physical, mental, and social care of patients, often in a capitated payment system. The primary care internist can play a key role in leading these teams, and such partnerships may help lessen reliance on the current primary care hustle of 15- to 20-minute visits. In such models, it is possible that the internist will need to see each patient only once or twice a year, in a longer appointment slot, instead of 4 to 6 times per year in rushed visits. The hope is that this will encourage the relationship-building that is so important in primary care and reduce the time and volume scheduling burdens seen in the current fee-for-service system.

The joy of digging into a diagnostic dilemma has been a hallmark of internal medicine. The rise of technology should enable primary care internists to increase their diagnostic capabilities in the office without an overreliance on subspecialists.

Examples of technology that may benefit primary care are artificial intelligence with real-time diagnostic support, precision medicine, and office-based point-of-care ultrasonography.^15–17 By increasing the diagnostic power of an office-based visit, we hope that the prestige factor of primary care medicine will increase as internists incorporate such advances into their clinics—not to mention the joy of making an appropriate diagnosis in real time.

Reimbursement and the value of time

Time is a valuable commodity for primary care internists. Unfortunately, there seems to be less of it in today’s practice. Gone are the days when we could go to the doctors’ dining room to decompress, chat, and break bread with colleagues. Today, we are more likely to be found in front of our computers over lunch answering patients’ messages. Time is also a key reason that physicians express frustration with issues such as prior authorizations for medications. These tasks routinely take time away from what is valuable—the care of our patients.

The rise of innovative practice models such as direct primary care and concierge medicine can be seen as a market response to the frustrations of increasing regulatory complexity, billing hassles, and lack of time. However, some have cautioned that such models have the potential to worsen healthcare disparities because patients pay out of pocket for some or all of their care in these practices.¹⁸

Interestingly, the Centers for Medicare and Medicaid Services recently unveiled new voluntary payment models for primary care that go into effect in 2020. These models may allow for increased practice innovation. The 2 proposed options are Primary Care First (designed for small primary care practices) and Direct Contracting (aimed at larger practices). These models are designed to provide a predictable up-front payment stream (a set payment per beneficiary) to the primary care practice. Hopefully, these options will move primary care away from the current fee-for-service, multiple-patient-visit model.

The primary care model allows practices to “assume financial risk in exchange for reduced administrative burden and performance-based payments” and “introduces new, higher payments for practices that care for complex, chronically ill patients.”¹⁹ It is too soon to know the effectiveness of such models, but any reimbursement innovation should be met with cautious optimism.

In addition, the Centers for Medicare and Medicaid Services has recently moved to reduce requirements for documentation. For example, one can fully bill with a medical student note without needing to repeat visit notes.^20,21 Such changes should decrease the time needed to document the EMR and free up more time to care for patients.

A CALL TO ACTION

The national shortage of primary care providers points to the fact that this is a difficult career, and one that remains undervalued. One step we need to take is to protect the time we have with patients. It is doubtful that seeing a greater number of sicker patients each day, in addition to the responsibilities of proactive population-based care (“panel management”), will attract younger generations of physicians to fill this void, no matter what technology we adopt.

Keys to facilitating this change include understanding the value of primary care physicians, decreasing the burden of documentation, facilitating team-care options to support them, and expanding diagnostic tools available to use within primary care. If we don’t demand change, who will be there to take care of us when we grow old?

“My dear, here we must run as fast as we can, just to stay in place. And if you wish to go anywhere you must run twice as fast as that.”
—Lewis Carroll
Alice’s Adventures in Wonderland

The future of primary care internal medicine physicians is uncertain. According to a 2018 survey of internal medicine residents conducted by the American College of Physicians, only 11% were considering primary care as a career path.¹ In 1998, that number was 54%.²

See related commentary

Possible reasons are many:

• Lower pay compared with subspecialists in a pay system that rewards procedural competency over mental effort
• Work schedules less flexible than in other specialties (eg, hospital medicine practitioners may have 1 week on and 1 week off)
• Perceived lack of respect
• Increasing regulatory and record-keeping burdens
• Tyranny of 15- to 20-minute appointments (irrespective of patient complexity)
• Scope-of-practice concerns as other providers seek primary care equivalency status (eg, pharmacists, walk-in clinics, advanced practice providers, telemedicine providers).

The result is a projected shortage of primary care physicians of 21,100 to 55,200 by 2030, according to a 2019 report by the Association of American Medical Colleges,³ despite an expected growth in advanced practice providers in primary care such as nurse practitioners and physician assistants.

A practical result of this shortage will be even less patient access to primary care physicians. A 2017 national survey found that the average wait time for a new patient-physician appointment has already increased by 30% since 2014.⁴ The wait time to see a primary care physician varied between 29 days in major metropolitan areas (up 50% from 2014) and 56 days in mid-sized markets. The longest waits by market size were 109 days for new patients in Boston, MA, and 122 days for those living in Albany, NY.

What are the implications?

In this issue, Pravia and Diaz⁵ make the case that primary care providers must adapt their practices to meet the needs of younger generations by increasing their use of technology. We agree that telemedicine, wearable medical devices, and enhanced patient communication through the electronic medical record (EMR) are here to stay and should be embraced.

However, we have seen the challenges of adopting technologic advances without first making an adjustment to the volume-driven patient schedule. For such advances to be successfully integrated into a clinical practice, it is vital to be cognizant of the current challenges encountered in primary care internal medicine.

UNIQUE BURDENS ON PRIMARY CARE

In addition to the stress of addressing multiple complex medical problems within a short time, evaluating multiple medical problems often leads to increases in results to review, forms to complete, and calls to patients. Even treatment plans initiated by specialists are often deferred to primary care providers for dosing adjustments, follow-up laboratory testing, and monitoring.

Moreover, patients often seek a second opinion from their primary care provider regarding care provided by subspecialists, as they consider their primary care provider to be the doctor who knows them best. And though it can be personally gratifying to be considered a trusted partner in the patient’s care, these requests often result in additional phone calls to the office or another thing to address within a complex visit.

A large in-box can be daunting in the setting of increased EMR demands. Whether you have difficulty putting in basic orders or are an advanced user, each upgrade can make you feel like you’re using the EMR for the first time. This is a problem for all specialties, but in primary care, one is addressing a large spectrum of concerns, so there is less opportunity to use standardized templates that can help buffer the problem.

A study of primary care providers found that nearly 75% of each patient visit was spent on activities other than face-to-face patient care, including working with the EMR.⁶ Similarly, a study using in-office observations and after-hours diaries found that physicians from various specialties spend 2 hours on administrative duties for each hour that they see patients in the office, followed by an additional 1 to 2 hours of work after clinic, mostly devoted to the EMR.⁷

Clinicians using scribes to help with record-keeping duties often need to see more patients to compensate for the cost. Adding 2 to 3 patients to a daily schedule usually means adding more medical conditions to manage, with an exponential increase in testing and in-box burden.

The additional burden this coverage creates in primary care is often not well understood by those in other specialties.

Another burden unique to primary care providers is the nearly continuous publication of guidelines that are often confusing and discrepant. Because many high-impact guidelines represent expert consensus or evidence from specialist perspectives, they may not fit the primary care model or values: eg, primary care guidelines tend to place more emphasis on harms associated with screening.

Screening for breast and prostate cancers is a prime example. Both require shared decision-making based on patient preferences and values.^8,9 Detailed discussions about preventive screening can be difficult to achieve within the context of a medical visit owing to time limitations, especially if other medical conditions being addressed are equally controversial, such as blood pressure target goals. A decade ago, one could easily declare, “It’s time for your annual PSA test,” and move on to other concerns. Given the changing evidence, an informed patient is now likely to question whether this test should be done, how often it should be done, and whether a prostate examination should also be included.

The push toward population health has raised questions about the value of a preventive wellness visit, especially in healthy patients.^10,11 Arguments against the annual physical do not account for the value of these visits, which provide the opportunity to have time-intensive shared decision-making conversations and build a trusting patient-physician relationship. The value of the annual physical is not simply to do examinations for which there is limited evidence; it is a time for us to get to know our patients, to update their preventive needs (and the medical record), and to discuss which screening tests they may safely forgo to avoid unnecessary false-positives, leading to excess cost and harm.

This trusting relationship, developed over years, is likely to save both the patient and the healthcare system significant money. For example, it enables us to reassure patients that an antibiotic is not needed for their upper respiratory infection, to encourage them to try a dietary change before proceeding with computed tomography for their abdominal pain, or to discourage them from inappropriately aggressive screening tests that may result in overtesting or overdiagnosis.

Unfortunately, it is nearly impossible to accurately quantify these substantial benefits to the healthcare system and patients. And there is a real potential that recommendations against the annual physical may eventually affect future reimbursement, which would add to the time pressures of an already overburdened primary care workforce.

DO PRIMARY CARE PHYSICIANS MAKE A DIFFERENCE?

As medicine and technology evolve, patients have more ways to access care. However, the Internet also provides patients with access to more conflicting information than ever before, making it even more important for clinicians, as trusted partners in their patients’ health, to help patients navigate the waters of information and misinformation.

Studies have shown that having a primary care physician is associated with a longer life span, higher likelihood of reporting good health, and similar clinical outcomes for common conditions such as diabetes and hypertension when compared with subspecialty care, but at a lower cost and with less resource utilization.^12,13 In a study published in 2019, Basu et al¹² found that for every 10 additional primary care physicians per 100,000 population, there was an associated 51.5-day increase in life expectancy, compared with a 19.2-day increase for specialists. Cost savings also occur. Similarly, a review by the American College of Physicians¹³ found that each additional primary care physician per 10,000 population in a US state increased the state’s health quality ranking by more than 10 spots and reduced their overall spending per Medicare beneficiary. In contrast, an increase of 1 specialist per 10,000 population was linked to a 9-spot decrease in health-quality ranking and an increase in spending.

WHY CHOOSE PRIMARY CARE?

As medical students, we fell in love with internal medicine because of the complexity and intellectual challenges of working through a diagnostic dilemma. There is a certain excitement in not knowing what type of patients will show up that day.

Primary care’s focus on continuity and developing long-standing relationships with patients and their families is largely unmatched in the subspecialty field. It is satisfying to have a general knowledge of the human body, and the central vantage point with which to weigh different subspecialty recommendations. We feel such sentiments are common to those interested in primary care, but sadly, we believe these are not enough to sustain the future of primary care internal medicine.

IS THE FUTURE BRIGHT OR BLEAK?

Primary care internists must resist the call to “run twice as fast.” Instead, we need to look for ways where our unique skill sets can benefit the health of our nation while attracting students to internal medicine primary care. The following are potential areas for moving forward.

The aging of America

The US Census Bureau projects that by the year 2035, older adults will outnumber children for the first time in US history, and by the year 2060, nearly 25% of the US population will be 65 or older.¹⁴ The rise of the geriatric patient and the need for comprehensive care will create a continued demand for primary care internists. There certainly aren’t enough geriatricians to meet this need, and primary care internists are well trained to fill this gap.

The rise of the team approach

As we are learning, complex disease management benefits from a team approach. The rise of new models of care delivery such as accountable care organizations and patient-centered medical homes echo this reality. The day of a single provider “doing it all” is fading.

The focus on population health in these models has given rise to multidisciplinary teams—including physicians, nurses, advanced practice providers, social workers, and pharmacists—whose function is to help manage and improve the physical, mental, and social care of patients, often in a capitated payment system. The primary care internist can play a key role in leading these teams, and such partnerships may help lessen reliance on the current primary care hustle of 15- to 20-minute visits. In such models, it is possible that the internist will need to see each patient only once or twice a year, in a longer appointment slot, instead of 4 to 6 times per year in rushed visits. The hope is that this will encourage the relationship-building that is so important in primary care and reduce the time and volume scheduling burdens seen in the current fee-for-service system.

The joy of digging into a diagnostic dilemma has been a hallmark of internal medicine. The rise of technology should enable primary care internists to increase their diagnostic capabilities in the office without an overreliance on subspecialists.

Examples of technology that may benefit primary care are artificial intelligence with real-time diagnostic support, precision medicine, and office-based point-of-care ultrasonography.^15–17 By increasing the diagnostic power of an office-based visit, we hope that the prestige factor of primary care medicine will increase as internists incorporate such advances into their clinics—not to mention the joy of making an appropriate diagnosis in real time.

Reimbursement and the value of time

Time is a valuable commodity for primary care internists. Unfortunately, there seems to be less of it in today’s practice. Gone are the days when we could go to the doctors’ dining room to decompress, chat, and break bread with colleagues. Today, we are more likely to be found in front of our computers over lunch answering patients’ messages. Time is also a key reason that physicians express frustration with issues such as prior authorizations for medications. These tasks routinely take time away from what is valuable—the care of our patients.

The rise of innovative practice models such as direct primary care and concierge medicine can be seen as a market response to the frustrations of increasing regulatory complexity, billing hassles, and lack of time. However, some have cautioned that such models have the potential to worsen healthcare disparities because patients pay out of pocket for some or all of their care in these practices.¹⁸

Interestingly, the Centers for Medicare and Medicaid Services recently unveiled new voluntary payment models for primary care that go into effect in 2020. These models may allow for increased practice innovation. The 2 proposed options are Primary Care First (designed for small primary care practices) and Direct Contracting (aimed at larger practices). These models are designed to provide a predictable up-front payment stream (a set payment per beneficiary) to the primary care practice. Hopefully, these options will move primary care away from the current fee-for-service, multiple-patient-visit model.

The primary care model allows practices to “assume financial risk in exchange for reduced administrative burden and performance-based payments” and “introduces new, higher payments for practices that care for complex, chronically ill patients.”¹⁹ It is too soon to know the effectiveness of such models, but any reimbursement innovation should be met with cautious optimism.

In addition, the Centers for Medicare and Medicaid Services has recently moved to reduce requirements for documentation. For example, one can fully bill with a medical student note without needing to repeat visit notes.^20,21 Such changes should decrease the time needed to document the EMR and free up more time to care for patients.

A CALL TO ACTION

The national shortage of primary care providers points to the fact that this is a difficult career, and one that remains undervalued. One step we need to take is to protect the time we have with patients. It is doubtful that seeing a greater number of sicker patients each day, in addition to the responsibilities of proactive population-based care (“panel management”), will attract younger generations of physicians to fill this void, no matter what technology we adopt.

Keys to facilitating this change include understanding the value of primary care physicians, decreasing the burden of documentation, facilitating team-care options to support them, and expanding diagnostic tools available to use within primary care. If we don’t demand change, who will be there to take care of us when we grow old?

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

See related article

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

UNMET NEEDS

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

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

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

GROWING UP IS HARD; START PLANNING EARLY

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

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

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

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

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

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

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

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

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

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

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

DSM-5: AUTISM IS HETEROGENEOUS

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

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

ONE RESIDENTIAL MODEL DOES NOT FIT ALL

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

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

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

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

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

FINDING CARE CAN BE DAUNTING

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

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

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

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

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

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

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

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

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

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

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

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

THE TIME TO ACT IS NOW

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

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

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

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

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

See related article

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

UNMET NEEDS

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

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

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

GROWING UP IS HARD; START PLANNING EARLY

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

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

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

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

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

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

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

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

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

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

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

DSM-5: AUTISM IS HETEROGENEOUS

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

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

ONE RESIDENTIAL MODEL DOES NOT FIT ALL

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

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

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

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

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

FINDING CARE CAN BE DAUNTING

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

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

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

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

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

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

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

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

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

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

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

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

THE TIME TO ACT IS NOW

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

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

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

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

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

See related article

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

UNMET NEEDS

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

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

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

GROWING UP IS HARD; START PLANNING EARLY

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

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

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

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

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

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

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

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

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

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

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

DSM-5: AUTISM IS HETEROGENEOUS

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

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

ONE RESIDENTIAL MODEL DOES NOT FIT ALL

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

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

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

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

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

FINDING CARE CAN BE DAUNTING

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

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

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

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

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

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

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

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

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

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

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

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

THE TIME TO ACT IS NOW

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

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

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

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

To the Editor: We read with great pleasure the article by Sharayah et al about acute gastro­paresis in a patient with diabetic ketoacidosis.¹ However, in the case description, the authors reached a diagnosis of gastroparesis secondary to diabetic ketoacidosis without aptly ruling out some of its most common causes such as hypokalemia and other electrolyte imbalances seen in diabetic patients (in the setting of recurrent vomiting).

The authors also did not include the patient’s duration of diabetes or hemoglobin A_1c level, both of which are linked with gastroparesis in diabetic patients.² Pertinent biochemical information that can help readers formulate a rational approach and journey to making a diagnosis appears elusive in their article.

To the Editor: We read with great pleasure the article by Sharayah et al about acute gastro­paresis in a patient with diabetic ketoacidosis.¹ However, in the case description, the authors reached a diagnosis of gastroparesis secondary to diabetic ketoacidosis without aptly ruling out some of its most common causes such as hypokalemia and other electrolyte imbalances seen in diabetic patients (in the setting of recurrent vomiting).

The authors also did not include the patient’s duration of diabetes or hemoglobin A_1c level, both of which are linked with gastroparesis in diabetic patients.² Pertinent biochemical information that can help readers formulate a rational approach and journey to making a diagnosis appears elusive in their article.

To the Editor: We read with great pleasure the article by Sharayah et al about acute gastro­paresis in a patient with diabetic ketoacidosis.¹ However, in the case description, the authors reached a diagnosis of gastroparesis secondary to diabetic ketoacidosis without aptly ruling out some of its most common causes such as hypokalemia and other electrolyte imbalances seen in diabetic patients (in the setting of recurrent vomiting).

The authors also did not include the patient’s duration of diabetes or hemoglobin A_1c level, both of which are linked with gastroparesis in diabetic patients.² Pertinent biochemical information that can help readers formulate a rational approach and journey to making a diagnosis appears elusive in their article.

In Reply: We thank the readers for their letter. Our patient’s laboratory values at the time of presentation were as follows:

• Corrected sodium 142 mmol/L
• Potassium 5.5 mmol/L
• Phosphorus 6.6 mmol/L.

The rest of the electrolyte levels were within normal limits.

These reported electrolyte levels were unlikely to cause such gastroparesis. The patient’s hemoglobin A_1c was 8.7% at the time of presentation, with no previous values available. However, since abdominal computed tomography done 1 year before this presentation did not show stomach dilation and the patient was asymptomatic, his gastroparesis was presumed to be acute.

In Reply: We thank the readers for their letter. Our patient’s laboratory values at the time of presentation were as follows:

• Corrected sodium 142 mmol/L
• Potassium 5.5 mmol/L
• Phosphorus 6.6 mmol/L.

The rest of the electrolyte levels were within normal limits.

These reported electrolyte levels were unlikely to cause such gastroparesis. The patient’s hemoglobin A_1c was 8.7% at the time of presentation, with no previous values available. However, since abdominal computed tomography done 1 year before this presentation did not show stomach dilation and the patient was asymptomatic, his gastroparesis was presumed to be acute.

In Reply: We thank the readers for their letter. Our patient’s laboratory values at the time of presentation were as follows:

• Corrected sodium 142 mmol/L
• Potassium 5.5 mmol/L
• Phosphorus 6.6 mmol/L.

The rest of the electrolyte levels were within normal limits.

These reported electrolyte levels were unlikely to cause such gastroparesis. The patient’s hemoglobin A_1c was 8.7% at the time of presentation, with no previous values available. However, since abdominal computed tomography done 1 year before this presentation did not show stomach dilation and the patient was asymptomatic, his gastroparesis was presumed to be acute.

Thanks to advances in medical science and our understanding of inherited and acquired liver disease, many more children with acquired or congenital liver disease survive into adulthood than they did 2 decades ago. Improvements in immunosuppression and surgery have increased the chances of pediatric liver transplant recipients reaching adulthood, with a survival rate of 75% at 15 to 20 years.¹

With the growing number of adult patients with pediatric-onset liver disease, internists and adult hepatologists need to be aware of these liver diseases and develop expertise to manage this challenging group of patients. Moreover, young adults with pediatric-onset chronic liver disease pose distinct challenges such as pregnancy, adherence to medical regimens, and psychosocial changes in life.

These patients need a “transition of care” rather than a “transfer of care.” Transition of care is a multifaceted process that takes the medical, educational, and psychosocial needs of the patient into consideration before switching their care to adult care physicians, whereas transfer of care is simply an administrative process of change to adult care without previous knowledge of the patients.²

BILIARY ATRESIA

Biliary atresia is a progressive inflammatory fibrosclerosing cholangiopathy of unknown cause. Its prevalence varies with geographic location, ranging from 1 in 6,000 to 1 in 19,000, with the highest prevalence in Taiwan.³

Biliary atresia usually presents within the first few weeks of life, with progressive cholestasis leading to failure to thrive and to fat-soluble vitamin deficiency. Approximately 20% of patients have congenital splenic, gastrointestinal, genitourinary, cardiac, and venous malformations.^4,5 Untreated, biliary atresia progresses to end-stage liver disease and death within 2 years.

The first-line treatment for biliary atresia is to establish biliary outflow with the Kasai procedure (hepatic portoenterostomy), in which a jejunal limb is anastomosed in a Roux-en-Y with the liver. The outcomes of the Kasai procedure depend on the timing of surgery, so timely diagnosis of biliary atresia is crucial. When the Kasai procedure is performed within 60 days of birth, biliary flow is achieved in up to 70% of patients; but if performed after 90 days, biliary flow is achieved in fewer than 25%.⁶

Long-term outcomes of biliary atresia in patients with their native liver have been reported in a few studies.

In a French study,⁷ 743 patients with biliary atresia underwent the Kasai procedure at a median age of 60 days. Survival rates were 57.1% at 2 years, 37.9% at 5 years, 32.4% at 10 years, and 28.5% at 15 years. In other studies,^4–9 the 20-year transplant-free survival rate ranged from 23% to 46%. Therefore, at least one-third of children with biliary atresia survive to adulthood with their native liver.

Implications of biliary atresia in adulthood

Although the Kasai procedure improves biliary outflow, up to 70% of patients develop complications of biliary atresia such as progressive fibrosis, cirrhosis, portal hypertension, cholangitis, and hepatocellular carcinoma, even after a successful Kasai procedure.¹⁰

Portal hypertension with evidence of splenomegaly, thrombocytopenia, or ascites is found in two-thirds of long-term survivors of biliary atresia with a native liver, with variceal hemorrhage occurring in 30%.¹¹ Therefore, patients with biliary atresia who have evidence of portal hypertension should be screened for varices with upper endoscopy on an annual basis. Management of variceal hemorrhage in these patients includes the use of octreotide, antibiotics, variceal ligation, and sclerotherapy; primary prophylaxis can be achieved with beta-blockers and endoscopic variceal ligation.¹²

Cholangitis is frequent, occurring in 40% to 60% of biliary atresia patients after the Kasai procedure, and about one-fourth of these patients have multiple episodes.¹³ The number of episodes of cholangitis negatively affects transplant-free survival.¹⁴ Patients with cholangitis should be adequately treated with oral or intravenous antibiotics depending on the severity of presentation. The role of prophylaxis with antibiotics remains unclear.¹⁵

Pulmonary complications such as hepato­pulmonary syndrome and portopulmonary hypertension can also occur in biliary atresia patients with a native liver. It is important for physicians to be aware of these complications and to screen for them, for example, with agitated saline echocardiography for hepatopulmonary syndrome and with echocardiography for portopulmonary hypertension. Timely screening is crucial, as the outcome of liver transplant depends on the severity at the time of transplant in these conditions, especially portopulmonary hypertension.

Hepatocellular carcinoma has been rarely reported in children with biliary atresia,¹⁶ so well-defined guidelines for screening in young adults with biliary atresia are lacking. Most centers recommend screening with ultrasonography of the abdomen and alpha-fetoprotein measurement every 6 months or annually starting soon after the Kasai procedure, since hepatocellular carcinoma has been reported in children as young as age 2.¹⁶

Transplant. Adult hepatologists are faced with the challenging task of deciding when it is time for transplant, balancing the long-term complications of biliary atresia with the risk of long-term immunosuppression after transplant. In addition, young adults with these complications may have preserved synthetic function, resulting in low Model for End-Stage Liver Disease (MELD) scores, which may complicate the process of listing for transplant.

Neurocognitive deficits are reported in children with biliary atresia,¹⁷ but young adults with biliary atresia generally have reasonable cognitive function and prospects for education and employment.

Pregnancy with successful outcomes has been reported.⁸

Alagille syndrome is an autosomal-dominant multisystemic disease caused by mutations in the JAG1 gene (accounting for > 95% of cases) and the NOTCH2 gene, with highly variable expression.¹⁸

Extrahepatic manifestations include butterfly vertebral defects, facial dysmorphism (eg, deep-set and low-set eyes, with characteristic “triangular” facies), posterior embryotoxon (a congenital defect of the eye characterized by an opaque ring around the margin of the cornea), peripheral pulmonary stenosis, renal abnormalities, and vascular malformations.

Hepatic manifestations vary from asymptomatic laboratory abnormalities to progressive cholestasis starting in early infancy with intractable pruritus, xanthomas, failure to thrive, and end-stage liver disease requiring liver transplant in childhood in 15% to 20% of patients.¹⁹

Implications of Alagille syndrome in adulthood

Transplant. Interestingly, the phenotype of hepatic disease is already established in childhood, with minimal or no progression in adulthood. Most children with minimal liver disease experience spontaneous resolution, whereas those with significant cholestasis might ultimately develop progressive liver fibrosis or cirrhosis requiring liver transplant in childhood. Only a small subset of children with minimal cholestasis progress to end-stage liver disease in late childhood or early adulthood.²⁰ Therefore, liver transplant for progressive liver disease from significant cholestasis almost always occurs in childhood, usually between ages 1 and 4.²¹

In a retrospective study comparing posttransplant outcomes in children with Alagille syndrome and biliary atresia, 1-year patient survival was excellent overall in children with Alagille syndrome, although slightly lower than in children with biliary atresia, most likely owing to extrahepatic morbidities of Alagille syndrome and especially the use of immunosuppression in those with renal disease.²¹ Similarly, 1- and 5-year patient and graft survival outcomes of liver transplant in adults with Alagille syndrome were also excellent compared with those who received a liver transplant in childhood for Alagille syndrome or in adulthood for biliary atresia.²²

Hepatocellular carcinoma has occurred in these patients in the absence of cirrhosis, which makes implementation of prognostic and surveillance strategies almost impossible to design for them. Annual ultrasonography with alpha-fetoprotein testing might be applicable in Alagille syndrome patients. However, deciding which patients should undergo this testing and when it should start will be challenging, given the paucity of data.

Cardiovascular disease. Cardiac phenotype is also mostly established in childhood, with the pulmonary vasculature being most commonly involved.¹⁹ In contrast, renal and other vascular abnormalities can manifest in adulthood. Renal manifestations vary and include structural anomalies such as hyperechoic kidneys or renal cysts, which can manifest in childhood, and some abnormalities such as hypertension and renal artery stenosis that can manifest in adulthood.^23,24

Vasculopathy is reported to involve the intracranial, renal, and intra-abdominal blood vessels.²⁵ Neurovascular accidents such as stroke and intracranial hemorrhage can occur at any age, with significant rates of morbidity and death.²⁶ Therefore, some experts recommend magnetic resonance angiography every 5 years and before any major intervention to prevent these devastating complications.²⁰

Pregnancy. Successful pregnancies have been reported. Preexisting cardiac and hepatic disease can complicate pregnancy depending on the severity of the disease. Because of the autosomal-dominant pattern of inheritance, infants have a 50% risk of the disease, so genetic counseling should be seriously considered before conception.²⁷ Prenatal diagnosis is possible, but the lack of genotype-phenotype correlation precludes its use in clinical practice.

PROGRESSIVE FAMILIAL INTRAHEPATIC CHOLESTASIS

Progressive familial intrahepatic cholestasis (PFIC) is a heterogeneous group of autosomal-recessive conditions associated with disruption of bile formation causing cholestatic liver disease in infants and young children. Three types have been described, depending on the genetic mutation in the hepatobiliary transport pathway:

• PFIC 1 (Byler disease) is caused by impaired bile salt secretion due to mutations in the ATP8B1 gene encoding for the familial intrahepatic cholestasis 1 (FIC 1) protein
• PFIC 2 is caused by impaired bile salt secretion due to mutations in the ABCB11 gene encoding for the bile salt export pump (BSEP) protein
• PFIC 3 is caused by impaired biliary phospholipid secretion due to a defect in ABCB4 encoding for multidrug resistance 3 (MDR3) protein.²⁸

PFIC 1 and 2 manifest with low gamma-glutamyl transferase (GGT) cholestasis, whereas PFIC 3 presents with high GGT cholestasis.

PFIC 1 and PFIC 2 usually cause cholestasis in early infancy, but PFIC 3 can cause cholestasis in late infancy, childhood, and even adulthood.

Because ATP8B1 is expressed in other tissues, PFIC 1 is characterized by extrahepatic manifestations such as sensorineural hearing loss, growth failure, severe diarrhea, and pancreatic insufficiency.

PFIC 1 and 2 (low-GGT cholestasis) are usually progressive and often lead to end-stage liver disease and cirrhosis before adulthood. Therefore, almost all patients with PFIC 1 and 2 undergo liver transplant or at least a biliary diversion procedure before reaching adulthood. Intractable pruritus is one of the most challenging clinical manifestations in patients with PFIC.

First-line management is pharmacologic and includes ursodeoxycholic acid, antihistamines (eg, hydroxyzine), bile acid sequestrants (eg, cholestyramine, colestipol), naltrexone, and rifampin, but these have limited efficacy.¹⁰

Most patients, especially those with PFIC 1 and 2, undergo a biliary diversion procedure such as partial external biliary diversion (cholecystojejunocutaneostomy), ileal exclusion, or partial internal biliary diversion (cholecystojejunocolic anastomosis) to decrease enterohepatic circulation of bile salts. The efficacy of these procedures is very limited in patients with established cirrhosis. Excessive losses of bile can occur through the biliary stoma, leading to dehydration in patients with external biliary diversion. In patients who are not candidates for biliary diversion, endoscopic nasobiliary drainage of pancreatobiliary secretions could be achieved by placing a catheter in the common bile duct; this has been reported to be effective in relieving cholestasis in a few cases.²⁹

Liver transplant is needed in patients with progressive liver disease and intractable pruritus despite medical management and biliary diversion. Unlike in biliary atresia, liver transplant is not curative in PFIC 1, due to extrahepatic manifestations: patients with PFIC 1 can still have intractable diarrhea and pancreatitis after liver transplant. More importantly, allograft steatohepatitis with further progression to cirrhosis can occur after liver transplant in patients with PFIC 1. Interestingly, biliary diversion has been reported to improve graft steatosis and diarrhea after liver transplant.³⁰

Although graft survival after transplant is good in patients with PFIC 2, recurrence of low-GGT cholestasis has been reported and is believed to be due to the formation of anti-bile salt export pump (anti-BSEP) antibodies by the host immune system in response to exposure to new proteins from the transplant graft.³¹

Cancer. The risk of malignancy, especially hepatocellular carcinoma, is also increased in PFIC 2, affecting nearly 15% of patients. Therefore, standard hepatocellular carcinoma surveillance with ultrasonography or alpha-fetoprotein testing or both is recommended in patients with PFIC 2. Cholangiocarcinoma and pancreatic adenocarcinoma have also been reported in patients with PFIC 2.²⁰

Incomplete penetrance of mutations in ATP8B1 and ABCB11 can cause recurrent episodes of cholestasis and pruritus with asymptomatic periods between episodes, referred to as benign recurrent intrahepatic cholestasis. Prognosis is usually good, with no progression to cirrhosis.³²

Pregnancy. In contrast to FIC 1 and BSEP deficiency, MDR3 defects lead to a wide phenotypic spectrum depending on the type of mutation. Heterozygous mutation is associated with increased risk of development of cholestasis during pregnancy, which typically presents with generalized pruritus in the third trimester and is associated with adverse fetal outcomes. Intrahepatic cholestasis of pregnancy is usually treated with ursodeoxycholic acid, with reported improvement in pruritus, liver function, and pregnancy outcomes.³³

In adults, drug-induced liver injury and idiopathic cirrhosis have also been described with MDR3 defects. Intrahepatic lithiasis and cholesterol gallstones can also occur with MDR3 defects as a result of impaired secretion of biliary phospholipid.³² Despite intrahepatic cholestasis of pregnancy, successful outcomes have been reported in women with PFIC.²⁰

OTHER CHILDHOOD-ONSET INHERITED CHOLESTATIC DISEASES

Cystic fibrosis-associated liver disease

Nearly 40% of patients with cystic fibrosis develop liver disease.³⁴ Cystic fibrosis-associated liver disease encompasses a broad clinical spectrum including asymptomatic elevation of aminotransferases, neonatal cholestasis, hepatic steatosis, focal biliary cirrhosis, and multilobar cirrhosis. Cirrhosis and portal hypertension can occur in 5% to 10% of patients and is the third-leading cause of death in patients with cystic fibrosis.³⁵

Risk factors for cystic fibrosis-associated liver disease include male sex, meconium ileus, and severe CFTR gene mutation (class I–III) with pancreatic insufficiency. Cystic fibrosis-related cirrhosis is more frequent in children and adolescents, whereas noncirrhotic portal hypertension and intrahepatic cholangiopathies are more common in adults.³⁶

Limited available studies support treatment with ursodeoxycholic acid in patients with cholestasis to delay the progression of liver disease, but the impact of this drug on long-term outcome is unknown.²⁹

Most patients remain in compensated cirrhosis for many years before progressing to decompensated cirrhosis requiring liver transplant. Other indications for liver transplant include recurrent intractable variceal bleeding, hepatopulmonary syndrome, and portopulmonary hypertension. Combined liver and lung transplant may be considered in patients with advanced liver and lung disease. Outcomes after isolated liver or liver-lung transplant in cystic fibrosis patients have been comparable to those in patients with other liver diseases.³⁷

Defects in bile acid synthesis

Inherited defects of enzymes required for the synthesis of primary bile acids from cholesterol can cause cholestasis from impaired bile flow and production of hepatotoxic aberrant bile acids. The clinical presentation varies depending on the enzymatic defect and can range from liver disease of varying severity to neurologic manifestations. Idiopathic late-onset cholestasis and cirrhosis of unknown etiology have been reported in adults with bile acid synthesis defects.^38,39 Therefore, this diagnosis should be considered in cases of cryptogenic cirrhosis and other cholestatic features.

Treatment with primary bile acids (cholic acid) has been effective in most patients with defective bile acid synthesis.

Primary sclerosing cholangitis

Primary sclerosing cholangitis is characterized by progressive obliteration of intrahepatic and extrahepatic bile ducts and is most commonly seen in patients with inflammatory bowel disease. Sclerosing cholangitis can also be secondary to other diseases in children such as immunodeficiency syndromes, Langerhans cell histiocytosis, cystic fibrosis, or sickle cell anemia.⁴⁰ Neonatal sclerosing cholangitis is a rare autosomal-recessive disease characterized by a severe form of cholangiopathy in neonates and young infants requiring transplant. It can be associated with Kabuki syndrome and neonatal ichthyosis-sclerosing cholangitis syndrome.

Treatment options are limited. Ursodeoxycholic acid and oral vancomycin have variable efficacy. Liver transplant is needed in patients with decompensated cirrhosis. Patients with primary sclerosing cholangitis, especially adults, are at higher risk of developing cholangiocarcinoma, and therefore screening with ultrasonography or magnetic resonance imaging every 6 to 12 months is recommended.

The risk of preterm and cesarean deliveries may be elevated in women with primary sclerosing cholangitis, though data are limited.³³

Adolescent rebellion poses risks

Outcomes of liver transplant in children and adolescents have improved tremendously in the past 2 decades with advances in surgical techniques, pre- and postoperative management, organ preservation, and immunosuppression. Now, most pediatric liver transplant recipients survive into adulthood, creating a unique challenge for internists and adult  care hepatologists.⁴¹

In rebellious adolescents and young adults, risk-taking behavior, nonadherence to immunosuppressive medications, alcohol intake, and substance abuse increase the risk of graft rejection and loss. Current immunosuppressive drugs such as calcineurin inhibitors (tacrolimus, cyclosporine), mycophenolate mofetil, sirolimus, and corticosteroids have drastically decreased rejection rates in compliant patients.⁴¹ Educating patients on the importance of taking their medications and avoiding alcohol and drug abuse is especially important for adolescents and young adults, as rates of nonadherence are high in these age groups.

Although pregnancy is usually successful after liver transplant, it should be considered high-risk due to reported complications such as graft rejection, diabetes, preeclampsia, sepsis, prematurity, and low birth weight. Conception should be avoided for at least 1 year after transplant.⁴² Appropriate counseling with regard to pregnancy and contraception is important.

There is no consensus on breastfeeding, but it is considered safe in women on low-dose calcineurin inhibitors.⁴³

Life is better with a new liver, but patients have special needs

Liver transplant is life-saving and improves quality of life. However, long-term pediatric liver transplant recipients face challenges such as strict adherence to medications and follow-up visits, avoiding exposure to infections, and fear of graft rejection.

Chronic liver disease in children leads to failure to thrive, growth failure, and even delayed puberty, which resolve in most patients after liver transplant before adulthood in the absence of other comorbidities.⁴⁴ However, these patients are reported to have lower psychosocial functioning and more psychiatric disorders such as anxiety or posttraumatic disorder.^41,44

Therefore, a psychologist or other mental health professional should be part of the management team from the time of pretransplant assessment to identify mental health problems and the need for adjustments before liver transplant. Ongoing psychosocial assessment after liver transplant is equally important to identify risks such as drug or alcohol abuse, depression, posttraumatic stress disorder, and medication nonadherence, all of which can negatively affect posttransplant outcome.⁴⁵

In addition, assessment of family functioning and structure is important for good long-term outcomes posttransplant; therefore, a social worker should also be a part of the transplant team. Psyschosocial assessment tools can identify high-risk candidates who would benefit from earlier intervention to avoid any negative impact posttransplant.

Neurocognitive development can be delayed in children with chronic liver disease, and the delay may persist even after liver transplant, with reported impairments in intellectual ability, language, verbal, and visuospatial functioning skills.⁴¹ In spite of this, a recent study found that more than half the study patients were employed at a median follow-up of 24 years from liver transplant and a median age of 27.⁴⁶

Remarkably, pediatric liver transplant recipients have reported quality of life comparable to that in the general population,⁴⁷ and even better than in patients with other chronic illnesses.⁴⁸

Long-term medical comorbidities in pediatric liver transplant recipients

Favorable outcomes such as long-term survival and good quality of life in pediatric liver transplant recipients are lessened by late complications such as portal vein thrombosis or biliary strictures needing interventions, chronic graft rejection, adverse effects of immunosuppression, and recurrence of the disease.

Split-liver transplant—splitting a deceased-donor allograft to provide grafts for 2 recipients—has revolutionized liver transplant by increasing the donor pool and thereby decreasing waitlist mortality rates, especially in pediatric candidates. Despite this advantage, split-liver transplant is technically challenging and associated with increased perioperative complications compared with whole-liver transplant, especially in adult recipients. Recently, experienced centers have reported favorable outcomes with split-liver transplant comparable to those with whole-liver transplant; therefore, split-liver transplant should be considered after careful evaluation of donor organ and recipient clinical status.⁴⁹

Old age in the recipient can also adversely affect liver transplant outcomes.⁵⁰

Interestingly, even in patients whose clinical course is unremarkable and biochemical values are normal, graft hepatitis or fibrosis of unknown cause with progression to cirrhosis has been described in the decade after transplant.⁴¹

Chronic rejection with eventual graft loss may be related to nonadherence in adolescents and can be reduced with use of an additional immunosuppressant such as sirolimus or mycophenolate. Chronic kidney disease can occur in about one-third of liver transplant recipients secondary to renal disease associated with primary disease (like Alagille syndrome), hepatorenal syndrome, and most importantly, use of calcineurin inhibitors.⁴⁵

Components of the metabolic syndrome such as type 2 diabetes, obesity, nonalcoholic fatty liver disease, hypertension, and dyslipidemia are also seen in long-term pediatric liver transplant survivors. Internists are advised to screen for these comorbidities so that interventions can be applied early to improve long-term health outcomes and graft survival.

Of importance, multiple studies have shown a 2-fold increase in the rates of de novo malignancy in liver transplant recipients, including solid-organ and lymphoproliferative cancers, probably due to long-term immunosuppression. Posttransplant lymphoproliferative disorder occurs at lower rates than with other solid-organ transplants; its incidence is greatest in pediatric patients and in the first 12 to 18 months after transplant.⁵¹

While the number of patients with childhood-onset liver disease and pediatric liver transplant recipients who survive into adulthood is increasing, there are no established guidelines or formal models for transitioning these patients into adult care. Consequently, studies on transitional process have examined various issues such as patient and parent frustration, poor medical knowledge among patients during transition, lack of parental facilitation, and inadequate knowledge on disease process among adult-care hepatologists.^52–54

A prolonged period of transition up to age 25 is preferred in complicated cases. Distinctive consideration for transition should include those with neurocognitive developmental delay from underlying disease or hepatic encephalopathy before transplant. These patients need additional support and time to achieve independence in health management before transition.⁵⁷ Validated questionnaires are available to assess readiness to transition into adult care,⁵⁸ implying that the decision to transition should not be based solely on age.