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June 3, 2021

How the Health System Overlooks Young Adults With Chronic Conditions

Author Affiliations
  • 1Brookings Institution, Washington, DC
JAMA Health Forum. 2021;2(6):e211685. doi:10.1001/jamahealthforum.2021.1685

The US health care system does not handle transitions well. Transitioning from one job to another invariably means changing—or losing—coverage and often trusted caregivers as well. Transitioning from hospital care to postacute care is frequently accompanied by confusing discharge plans or poorly coordinated home care.

Many people in the US can also encounter serious transitional problems as they age. Particularly troubling and largely ignored examples of these problems are often experienced by young adults with debilitating chronic physical illnesses, such as Crohn’s disease, epilepsy, severe migraines, sickle cell disease, type 1 diabetes, and cystic fibrosis. People with these conditions experience disabling flare-ups and need regular, intensive self-management. Yet their underlying disability is often largely invisible to the casual observer.

Young adults with such invisible conditions face all the normal challenges and transitions of healthy young adults in education or work, socially, and emotionally. But these young adults face the additional challenge of moving from pediatric to adult health care systems. They also have an increased risk of accompanying mental health conditions1 and more frequent, unplanned hospital readmissions.2 The institutions they must navigate are not well positioned to deal with their needs.

Obstacles to a Successful Life

Moving from pediatric to adult care means leaving a care system designed for children and their family network and entering another system that expects patients to be independent. It is too easy for the complex web of medical services assembled by the pediatric team and parents to come apart when the person moves into the adult care system, often exacerbated by young adults leaving their parents’ insurance. These disruptions often mean lower medication adherence as well as more flare-ups and hospitalizations.

Transitioning to college adds complications. A 2014 survey of 200 four-year colleges found that more than 40% had no system to identify students with chronic medical conditions,3 and schools varied considerably in their capacity to help students manage their conditions at a time when privacy laws limit parental involvement. But the problem is not just medical or legal. Classrooms may be wheelchair accessible for those with physical disabilities, but class schedules, attendance policies, and instructors with little understanding of conditions like Crohn’s disease or epilepsy can lead to failing grades. Although these students can request accommodations, they are expected to be proactive in doing so, and many are reluctant or too embarrassed to make requests. And often-rigid medical leave policies can make graduation impossible. Not surprisingly, students with chronic medical conditions are significantly less likely to attain their degrees.

Joining the workforce for the first time presents challenges for any young adult, but greater ones for young people with chronic conditions. They may be reluctant or fearful about disclosing their condition, and it is not easy for employers and coworkers to accept that someone who looks well may often be absent or reluctant to socialize. The Family and Medical Leave Act may help, but its provisions do not apply to companies with fewer than 50 employees. In addition—and often related to their condition—these young adults are more likely to work in temporary, contract, or gig jobs without health benefits.

Helping Young Adults Succeed

Addressing these obstacles requires several actions. One is to help the scale and nature of the problem to be better understood and recognized. There are relatively good national data on children with special needs; more than one-quarter of 16- to 17-year-olds enter adult life with these needs. But the available data on young people with preexisting conditions, chronic conditions, or both are insufficient to help employers, colleges, and parents readily understand the number or life trajectory of young adults with debilitating chronic conditions. The federal government needs to help address this gap, perhaps by the Maternal and Child Health Bureau extending its children’s health surveys to young adults and by replicating its current study on young adults with sickle cell disease for other conditions.

In addition, the medical system needs to consider a specialty covering these young adults, just as geriatrics recognizes that older adults need modified approaches. Also needed is the development of more specialized clinics and specialists to treat young adults with chronic conditions, replicating pioneering programs like the Transition Medicine Clinic at Baylor College of Medicine in Houston. More hospital systems should create child-adult transitional teams that develop well designed and documented transitional plans for a person with a major chronic condition leaving pediatric care. Plans should include helping the young person to gain experience in taking responsibility and advocating for their own care, with pediatricians coordinating with the young adult’s care team. That planning should start at age 14 years and requires more than clinical care.

For instance, Riley Children’s Health in Indiana has a state-funded program that works with adolescents and their parents to develop goals in adulthood and arrange peer supports, social services, and other wraparound services needed for success. Other states should help replicate such approaches. Inadequate Current Procedural Terminology billing codes and payment for these transitional services is a general problem; private plans and Medicaid need to explore better payment systems to cover transitional planning and services and pilot innovative models.

College and universities need to step up to the plate as well. States can help lead the way by investigating what services are currently provided by state institutions of higher education and what new steps are needed. Maryland may become a leader if proposed legislation becomes law. That legislation would create a task force to examine collegiate policies on handling the medical, academic, and social needs of these young adults with chronic conditions and to make recommendations for collecting better data and improving policies. With such information required by states, and ideally also by the federal Department of Education, accreditation requirements and other regulations could improve the academic accommodations made available to students.

Accommodations in the workplace are more difficult for these medical conditions, which are episodic, often unexpected, and sometimes disruptive—especially for smaller employers. Increasing required paid sick leave could help, but associated employer costs could mean fewer opportunities for these young adults. To find the best solutions for them as they enter the workforce, government agencies and employer organizations need to consult with peer groups such as the Invisible Wave and the Crohn’s and Colitis Young Adults Network, together with organizations that focus on these young people, such as Physician-Parent Caregivers. The federal government should also consider creating a pilot program with multiple agencies (including the Department of Health and Human Services and the Department of Labor) to test ways to improve the employability of young people with chronic conditions.

As society looks more carefully at transitional weaknesses in the health system, it is time to recognize the particular challenges facing young adults with chronic conditions—and to find effective ways to address them.

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Article Information

Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2021 Butler SM. JAMA Health Forum.

Corresponding Author: Stuart M. Butler, PhD, Brookings Institution, 1775 Massachusetts Ave NW, Washington, DC 20036 (smbutler@brookings.edu).

Conflict of Interest Disclosures: None reported.

Adams  JS, Chien  AT, Wisk  LE.  Mental illness among youth with chronic physical conditions.   Pediatrics. 2019;144(1):e20181819. doi:10.1542/peds.2018-1819PubMedGoogle Scholar
Dunbar  P, Hall  M, Gay  JC,  et al.  Hospital readmission of adolescents and young adults with complex chronic disease.   JAMA Netw Open. 2019;2(7):e197613. doi:10.1001/jamanetworkopen.2019.7613PubMedGoogle Scholar
Lemly  DC, Lawlor  K, Scherer  EA, Kelemen  S, Weitzman  ER.  College health service capacity to support youth with chronic medical conditions.   Pediatrics. 2014;134(5):885-891. doi:10.1542/peds.2014-1304PubMedGoogle ScholarCrossref
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    1 Comment for this article
    Comment re: Stuart Butler’s JAMA piece (6/14/21)
    Margaret McManus, MHS | Got Transition
    Thank you for such an excellent piece! As the federally funded national resource center on health care transition (Got Transition), we can certainly attest to the major gaps in health care transition (HCT) research and supports that you outlined. The barriers and disruptions in care that occur when youth and young adults (especially those with chronic conditions) transition into adult care have been well documented. But there is also evidence that when a structured process is in place for transition planning, transfer, and integration into adult care, positive outcomes take place. Based off the AAP/AAFP/ACP Clinical Report on HCT, Got Transition has developed the Six Core Elements of HCT, a structured approach for use in a variety of settings. For more information about the Six Core Elements, as well as other toolkits and resources for young adults and their families, visit www.GotTransition.org.