Physician Views on Barriers to Primary Care for Young Adults with Childhood-Onset Chronic Disease

General pediatricians and internists report multiple barriers to providing primary care to adults with childhood-onset chronic disease. Most believe it would be difficult for these patients to find an adult-focused provider to care for their needs.

In response to the growing number of adult survivors of serious childhood-onset chronic diseases, medical societies are recommending a transition to adult-focused primary care, rather than continued reliance on pediatric sub-specialists. This study, a national mailed survey of internists and pediatricians, describes primary care providers’ resources for caring for young adults with childhood-onset chronic diseases and names barriers to providing quality care. The survey was sent to 5,000 physicians and yielded 1,289 respondents.

Key Findings:

• Only half of general internists viewed themselves as readily able to provide for the primary care needs of young adults with childhood-onset chronic diseases.
• Half of the internists and 62 percent of pediatricians surveyed thought that it would be difficult for these young adults to find an adult-focused primary care provider.
• Both specialties reported lack of time and poor reimbursement as major barriers to providing primary care to transitioning patients.

Generalist providers play a critical role in care coordination and continuity of care for patients with chronic disease. Barriers to providing care for adults with childhood-onset chronic disease exist at the provider, practice and system levels. Doctors perceive improvements in office-based support to be most associated with quality of care delivery.