Physician views on barriers to primary care for young adults with childhood-onset chronic disease

Megumi J. Okumura, Eve A. Kerr, Michael D. Cabana, Matthew M. Davis, Sonya Demonner, Michele Heisler

Research output: Contribution to journalArticlepeer-review

82 Scopus citations


OBJECTIVE: Growing numbers of children with severe chronic illnesses are surviving to adulthood. tittle is known about what primary care physicians perceive as the resources for and barriers to providing primary care services for young adults who transfer care from pediatric to adult medicine practitioners. The objective of this study was to describe primary care physicians' resources for and barriers to caring for young adults with childhood-onset chronic diseases. METHODS: We conducted a national mailed survey of general internists and pediatricians to assess their office and specialty resources, attitudes toward, and barriers faced in treating young adult patients with childhood-onset chronic diseases. We then analyzed how these factors were associated with overall perceived quality of chronic illness care delivery. RESULTS: Overall response rate was 53% (1289 of 2434). 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% of pediatricians 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 reimbursement as major barriers in providing primary care to transitioning patients. Good office systems for coordinating patient care and improved coordination with subspecialty resources were both associated with improved provider perception of providing high-quality chronic illness care. CONCLUSIONS: General pediatricians and internists report multiple barriers to providing care for adults with childhood-onset chronic diseases. Improvements in office-based support seem to be most associated with perceived quality of care delivery.

Original languageEnglish (US)
Pages (from-to)e748-e754
Issue number4
StatePublished - Apr 2010
Externally publishedYes


  • Adolescents
  • Children with special health care needs
  • Cystic fibrosis
  • Primary care
  • Sickle cell disease
  • Transitional care
  • Young adults

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health


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