Research News

Are Young Adults with Sickle Cell Disease in Children’s Hospitals Different from Adolescents?

Reasons for admission are similar between adolescents and young adults with sickle cell disease at pediatric hospitals and mortality for both groups is low, according to findings from Nationwide Children’s.  The study, appearing in Pediatric Blood & Cancer, suggests that pediatric sickle cell disease programs are equipped to provide care for these older patients.  

In recent decades, sickle-cell-disease-related childhood mortality has decreased significantly and there is now a new and growing population of adults with sickle cell disease.  One vulnerable period for these chronically ill patients is the transition from pediatric to adult care.  Yet, the optimal time for this transition is unclear and there is currently no standard of care in the United States.

“Adult-specific services and programs exist in children’s hospitals for chronic diseases of childhood such as cystic fibrosis and congenital heart disease, which delays the time of transition to adult care for these patients,” said Sarah H. O’Brien, MD, a physician for Hematology, Oncology & Bone Marrow Transplant at Nationwide Children's Hospital, principal investigator in the Center for Innovation in Pediatric Practice and lead study author.  “There is no such common practice for sickle cell disease.”

To better understand the needs and healthcare use by adolescents and young adults with sickle cell disease, Dr. O’Brien and colleagues at Nationwide Children’s Hospital analyzed the Pediatric Health Information System (PHIS).  Specifically, they examined patterns of inpatient care by patients 13 to 21 years of age in freestanding U.S. children’s hospitals from 2000 to 2009.  The PHIS represents more than 75 percent of all freestanding children’s hospitals nationally and 17 of 20 major metropolitan areas.

Their study found:

  • Adolescents (13-17 years) and young adults (18-21 years) with sickle cell disease had similar lengths of stay and small absolute differences in reasons for admission and charges per admission when cared for at U.S. children’s hospitals.
  • Young adults were somewhat less likely to utilize private payers and incurred higher charges per admission, particularly in pharmacy costs, but absolute differences were small.
  • Complications associated with adult sickle cell disease, such as pulmonary hypertension and nephropathy were more common in young adults, but seen in fewer than 2 percent of all admissions.
  • Young adults did have more admissions per year, primarily due to admissions for vaso-occlusive (pain) crises.
  • In this pediatric study setting, mortality was very low.

“Our findings regarding similarities in reasons for admission between adolescent and young adult patients and the low mortality seen in both populations support the hypothesis that pediatric sickle cell disease programs are equipped to provide high-quality medical care for young adults with sickle cell disease,” said Dr. O’Brien.  Additional studies are needed to investigate whether extending the age of transition to 21 years or older as a national standard could improve readiness of transition, health-related quality of life, and morbidity and mortality in this patient population.  

Dickerson AK, Klima J, Rhodes MM, O'Brien SH. Young adults with SCD in US children's hospitals: Are they different from adolescents? Pediatr Blood Cancer. 2011 Jul 27. doi: 10.1002/pbc.23262. [Epub ahead of print]

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