Helping teens with special health care needs transition into adulthood

Editor’s note: A version of this blog post originally appeared on PolicyLab at Children’s Hospital of Philadelphia’s blog. PolicyLab is a Center of Emphasis within CHOP’s Research Institute. Caren Steinway, MSW, MPH, is a clinical research coordinator at PolicyLab. Sophie Jan, MD, MSHP, is a faculty member at PolicyLab at Children’s Hospital of Philadelphia, a pediatrician for children with special health care needs at Children’s and a general internist at the University of Pennsylvania Health System. Katherine Wu, a youth community health worker for CHOP’s MINT program.

Jessica*, a 21-year-old Children’s Hospital of Philadelphia patient with sickle cell disease and a challenging psychosocial background, was struggling with the transition from pediatric to adult care. Since Jessica was 18, her mom has not been involved in her medical care. She enrolled in community college, but had to withdraw because of her unstable medical condition. Jessica has a full-time job, but often presents at the emergency department for routine care instead of going to her primary care provider.

That’s until one of Jessica’s providers referred her to Children’s Multidisciplinary Intervention Navigation Team’s, and MINT’s youth community health worker came to her rescue. MINT is a clinical service devoted to improving the quality and safety of transfers from pediatric to adult health care systems, primarily Penn Medicine. Over the last two years, the MINT team has worked with over 80 patients with multiple chronic conditions or intellectual/developmental disabilities in need of enhanced transition services. MINT utilizes various support staff to assist with the transition process, including a youth community health worker who supports youth in developing self-care and self-advocacy skills.

During a one-on-one visit with the youth community health worker, Katherine, Jessica explained how making phone calls causes her anxiety, expressed confusion about deciding between the insurance plans offered at her job, and indicated that her goal is to return to college. Together, Jessica and Katherine identified two short-term goals and one long-term goal. The first short-term goal was to practice making polite and effective phone calls to providers and pharmacies using a script. The second short-term goal was to sign up for the online portals offered by her pharmacy, health care providers and insurance carrier. With Katherine’s help, Jessica signed up for and explored each portal and read the covered benefits for the insurance plans she was considering.

Jessica’s long-term goal was to return to community college within the next year. As a first step, Jessica and Katherine made a timeline that covered the steps along the way to reaching her goal, including: improving her adherence to her health care plan, applying for Family & Medical Leave, applying for financial aid, and applying to return to college.

As youth become adults, they are expected to take on increasing responsibility in all aspects of their lives, including health care. This increased responsibility is accompanied by having to make decisions about what do to after high school graduation – like finding a job – and how to live independently, all while balancing various changing psychosocial factors including where to live and what health insurance to sign up for. This phase of life is even harder for the nearly 4.3 million adolescents in the U.S. who have special health care needs like Jessica.

PolicyLab’s new Evidence to Action brief, “Transitioning to Adult Care: Supporting Youth with Special Health Care Needs,” synthesizes recent research identifying specific barriers these youth face and describes opportunities to facilitate high-quality transition for these adolescents. In it, we propose:

  • that providers and practices should begin early in preparing adolescents to take on a larger role in their health care,
  • health care systems should work together to create trusting relationships and educate each other on how to care to complex patients, and
  • policymakers should incentivize providers for the time it takes to coordinate care for these patients.

Without changes to our current transition practices, patients like Jessica would continue to flounder in the space between pediatric and adult life. Fortunately, her experience with MINT is evidence that health care systems across the country can make a significant difference in the lives of all adolescents with special health care needs.

*Name has been changed to protect patient privacy