Moving adolescents with sickle cell disease from pediatric to adult care hampered by lack of knowledgeable adult hematologists

Research Activities, December 2011, No. 376

Approaches to the transition of an adolescent patient from pediatric to adult care differ widely among large pediatric sickle cell disease (SCD) clinics, a new study finds. Until the 1970s few children with this hereditary disease survived into adulthood. But due to improvements in medical care, most patients with SCD now live into their 40s or beyond. Because many pediatric hospitals require pediatric patients to find adult care for acute and chronic illnesses around the age of legal maturity, pediatric SCD clinics have been working to develop programs to assist their transition to adult care.

The researchers examined survey responses from 30 of 45 (67 percent) large pediatric SCD centers. The majority of responding centers were affiliated with a free-standing children's hospital and 10 were part of a combined pediatric/adult hospital. Nearly three-fifths (57 percent) of the responding centers were part of systems with an age cutoff of 18-22 years for transition to adult care.

Discussion of transition with the patient began at an average age of 15.7 years (range = 13-18 years), with transition taking place at a mean age of 19.6 years (range = 18-25 years). One center continues to see adult patients, because the area lacks an adult provider able to care for patients with SCD. A third of the centers allow patients to stay in pediatric care past the deadline for certain reasons, such as cognitive or developmental delay, to complete a transition program, to graduate high school, or while they find an adult provider. Nearly all (97 percent) of the centers had identified at least one adult provider who would accept patients from pediatric care, but only 60 percent transferred their patients to an adult hematologist specializing in SCD. Another 10 percent of the clinics transferred patients to an internist, because no SCD-trained adult hematologist was available. The study was funded in part by the Agency for Healthcare Research and Quality (T32 HS00063).

More details are in "Transition from pediatric to adult care for sickle cell disease: Results from a survey of pediatric providers" by Amy Sobota, M.D., M.P.H., Ellis J. Neufeld, M.D., Ph.D., Philippa Sprinz, M.D., and others in the June 2011 American Journal of Hematology 86(6), pp. 512-515.

Current as of December 2011
Internet Citation: Moving adolescents with sickle cell disease from pediatric to adult care hampered by lack of knowledgeable adult hematologists: Research Activities, December 2011, No. 376. December 2011. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/news/newsletters/research-activities/dec11/1211RA18.html