Young Adults With Chronic Illness: How Can We Improve Transitions to Adult Care?

As another busy night unfolded in the pediatric emergency department, I opened the next patient’s chart: Male. Early 20s. Sickle cell disease. I felt a faint tug of familiarity while skimming through his medical record, but it was not until I walked into the room that I placed D.M. as a patient I had treated for a sickle cell pain crisis a few months earlier. Despite the pain he was experiencing at that time, I recalled his excitement as he shared his dreams of entering the medical field. Now, that enthusiasm was replaced with despondence, making him barely recognizable as the young man I knew before.

The chief complaint on his chart read “ingestion.” He told me how his previous hospitalization was supposed to be his last pediatric admission after more than 2 decades of pediatric care. He had an appointment scheduled with an adult hematologist in several weeks, but he developed severe pain earlier that morning and went to the adult emergency department for the first time. As a combined Internal Medicine/Pediatrics (Med-Peds) resident who rotates through both settings, I understood just how different and potentially traumatic that experience could have been. In the adult emergency department, he received intravenous fluids and an underdose of opiates for his level of tolerance—after all, his medical history, including a pain plan, was not known or easily accessible to the adult hospital system.

He was discharged from the hospital and his pain worsened. He called 1 of his former pediatric doctors for stronger pain medicines, but he wasn’t able to fill the prescription for logistical reasons. At that point, he felt completely alone, trapped between 2 worlds with no true home. His pain was undertreated, and he felt the overwhelming anxiety that it would not get better. He found an old bottle of benzodiazepines and swallowed a handful, thinking it was the only thing he could do to feel any sense of relief. Not knowing where else to turn, his mother brought him to the pediatric emergency department.

Unfortunately, scenarios like this one are all too common. Approximately 750 000 children with special health care needs will make the transition to adult care every year, and research suggests that only half of them get the care that is needed during this critical period.¹ D.M.’s story highlights some key areas of vulnerability for these young adults as they transition from pediatric to adult medical care.

Transition Is Not Transfer

Transfer refers to the actual event of switching from pediatric to adult-based medical care. Transition is the entire process of teaching health care independence for young adults, preparing for the transfer, and ensuring its completion. This semantic distinction is important because efforts are often focused merely on the transfer event itself. Successful transition is characterized by individual outcomes, such as patient quality of life, and health-oriented outcomes, such as decreased hospitalizations.²

Despite having a defined “end point” to his pediatric care, an identified adult specialist provider, and even a scheduled appointment, D.M. experienced a poor outcome. Perhaps he would have benefited from a more well-defined contingency plan for the period in between leaving pediatric care and establishing adult-based care. Certainly, the transfer process would be improved if adult providers had universal access to pediatric records. However, access to records alone is not adequate, and it is important to consider the many other components that can potentially hinder a smooth transition.

Transition Is Not Easy

There are numerous layers of complexity that make the transition process difficult. The adult medical system delivers health care in significantly different ways than the pediatric system. There is often greater availability of support and ancillary services in the pediatric world, such as social work and nurse coordinators. The culture of medicine can greatly differ, from the color of the walls to the amount of collaboration between physicians and patient families. Insurance coverage and reimbursement options change with age. Transition can be emotionally challenging for families who are leaving pediatricians they may have known for their entire lives and entering an unfamiliar world. Many adolescents with chronic illness or developmental delay may be cognitively much younger than their stated age. It is unknown how ready D.M. was for his transition, but parts of his story suggest shortcomings in certain domains, such as obtaining prescriptions and self-advocacy.

Physicians face obstacles as well. Pediatricians report barriers including lack of time and poor reimbursement; internists cite lack of training in caring for childhood-onset conditions.³ All of these factors may have hindered care for D.M. Thankfully, there is a growing body of resources to help. GotTransition.org separates transition into 6 core elements and has many tools and assessments for practitioners and patient resources that are available for download.⁴ The American College of Physicians incorporates many of those elements into more condition- and specialty-specific resources.⁵ Familiarity with the available resources should facilitate frequent and developmentally appropriate conversations about transition to help empower families and navigate them through the process.

Given these numerous barriers, it should come as no surprise that outcomes are poor for chronic diseases affecting the adolescent and young adult population, such as type 1 diabetes and rheumatologic disease.^6,7 By understanding these barriers, providers can fully appreciate the vulnerability of the transitioning population, realistically counsel patients, anticipate problems, and facilitate smooth transitions.

Transition Needs More Attention

There is long-standing consensus regarding the difficulty of transition and the drastic need for systemic improvement,⁸ but there is a surprising paucity of literature describing best practices for transition. One of the largest literature reviews to date looked at 25 transition programs and revealed great methodological variability, highlighting the need for more specific, quantifiable outcome measures to better compare and evaluate ongoing efforts.¹ Potential interventions are numerous and include transition clinics, transition consult services, and partnering with case managers and specially trained transition coordinators. The Children’s Hospital of Philadelphia is piloting clinical decision supports within the electronic health record and a multidisciplinary transition team for complex patients.⁹ Baylor College of Medicine has created an adult medical home staffed by Med-Peds physicians for patients who need substantial care coordination or have uncommon pediatric-onset conditions.¹⁰ Med-Peds trained physicians are often involved in these interventions given their unique familiarity with both systems of care. It is unlikely for any of these interventions to be universally applicable, but more research is needed to determine the best practices for the transition process.

D.M.’s story is a vivid illustration of the shortcomings and complexity of the current transition process faced by countless young adults with chronic disease and disability. Although some excellent resources exist, there remains a desperate need for more: more time spent assessing and empowering transition readiness, more coordination between pediatric and adult-based centers, more provider education, more preparation during medical training, and more thoughtful research exploring viable transition practices. With more, this vulnerable population will gain the support they need during a critical period of their lives.

Glossary

Med-Peds

Internal Medicine/Pediatrics