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Agency for Healthcare Research Quality

Child/Adolescent Health

Physicians report care barriers for young adults with childhood-onset chronic diseases

Thanks to medical advances, many children with chronic diseases are now able to live into adulthood. It is not uncommon for adults with conditions such as cystic fibrosis, sickle cell disease, and congenital heart disease to live into their 40s and beyond. Traditionally, many of these patients continued to be treated as adults by pediatric generalists and subspecialists. Many medical societies now recommend that these young adults transition to adult-centered care. However, these young adults may face health care barriers when it comes to finding quality adult primary care, according to a new study. Even physicians admit to not being readily able to meet the primary care needs of this group.

Researchers mailed a survey to 1,500 randomly selected pediatricians and 1,500 internists. A total of 1,289 responded. After contacting nonrespondents, the final response rate was 53 percent. Physicians were asked to share their views on the quality of primary care delivery to young adults with childhood-onset chronic diseases. The researchers wanted to know if it was easy for these young adults to find a general internist to handle their care needs. They also asked the physicians if they felt equipped to handle these patients' transfer of care into their practices.

Just 38 percent of pediatricians and 51 percent of internists felt it would be easy for these patients to find an internist willing to handle their primary care needs. Only half of the internists felt they were readily able to take on the complex needs of these patients. The majority of both pediatricians and internists felt they did not receive enough reimbursement to care for these young adults. Internists were significantly less likely to have easy access to specialized disease centers for cystic fibrosis or sickle cell disease. Nearly a quarter of internists (24 percent) believed they lacked the training necessary to care for these patients. Factors that were associated with improved provider perceptions of providing quality care included good office systems for coordinating care with subspecialty resources. The study was supported in part by the Agency for Healthcare Research and Quality (HS17716).

See "Physician views on barriers to primary care for young adults with childhood-onset chronic disease," by Megumi J. Okumura, M.D., Eve A. Kerr, M.D., M.P.H., Michael D. Cabana, M.D., M.P.H., and others in the April 2010 Pediatrics 125(4), pp. e748-e754.

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