Research offers guidance for doctors treating young adults

A study co-authored by Elon University Professor Cynthia Fair in JAMA Pediatrics gives healthcare providers clearer goals for helping young patients with chronic illnesses transition successfully to adult care settings.

It can be tough enough for a healthy teenager to move from the care of a longtime pediatrician to a medical practice that treats adults. Imagine how it might feel for a young person with a chronic illness.

Doctor expectations change. Resources and support services change. Billing procedures change. For the thousands of young people who each year move away from pediatric care as they manage conditions such as HIV, diabetes and sickle cell anemia, a successful transition to adult health care settings can spell the difference between life and death.

There’s just one problem. No one has ever attempted to codify what “success” means – until now.

New research co-authored by Elon University Professor Cynthia “Cindy” Fair was published online in November by the journal JAMA Pediatrics, an international peer-reviewed journal and the oldest continuously published pediatric journal in the United States.

Fair served as the lead author on a study conducted with colleagues from Stanford, Harvard, Duke and several of the top pediatric hospitals in the United States. Using multiple surveys over the span of 18 months, the team sought feedback from health care practitioners and public health experts on the most important criteria that should be used for determining whether a young adult has successfully transitioned.

Their final list, published in the article “International and Interdisciplinary Identification of Health Care Transition Outcomes,” identifies 10 goals for those young people:

  • Achieving optimal quality of life
  • Understanding characteristics of conditions and complications
  • Knowing names and purposes of medications
  • Adherence to medications and/or other treatment
  • Self-managing own conditions
  • Attending most medical appointments
  • Having a medical (health) home
  • Avoidance of unnecessary hospitalizations
  • Understanding health insurance options
  • Having a social network of friends

Patients and doctors who are conscious of these goals increase the likelihood that a transition will be successful, Fair said. Medical advances have led to a growing number of people with chronic conditions who survive into adulthood when, even a generation ago, many of those same patients were much more likely to die before their 18th birthday.

Compounding the problem are the ways in which pediatric patients are supported and have their care financed, Fair said. Psycho-social resources frequently end when a young patient moves into an adult setting. And doctors themselves sometimes don’t distinguish the needs and maturity of someone who is 18 or 19, compared to patients who are many years older.

“There’s a lot of variability in how doctors manage these and how patients have to be treated,” Fair said. “It’s a money and resources thing. It’s not that adult providers are necessarily insensitive.”

Fair, a faculty member in the Department of Human Service Studies and coordinator of Public Health Studies, initially came into the study based on her interest in HIV positive children. Her prolific scholarship on patients with perinatally acquired HIV won her Elon University’s Distinguished Scholar Award in 2015.

That research has resulted in dozens of papers and book chapters published in well-respected academic publications. She has made more than 30 presentations at national and international conferences.

Fair received a bachelor’s degree from Davidson College and master’s degrees in social work and public health as well as a doctorate in public health from the University of North Carolina at Chapel Hill. She teaches several courses that she developed, including childbirth, human service studies and public health studies senior seminars, and the Elon College Fellows junior seminar.

– Sarah Mulnick ’17 contributed to this story