How the Health System Overlooks Young Adults With Chronic Conditions

This is the authors' abstract. We don't add key points for this paper.

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 conditions 1 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 LifeMoving 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.