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. 2022 Oct 1;44(7):e999-e1005.
doi: 10.1097/MPH.0000000000002490. Epub 2022 Jun 7.

Transitioning Adolescents With Sickle Cell Disease From Pediatric to Adult Care: Results From a New Survey of Health Care Professionals

Nirmish R Shah  1 , Marsha J Treadwell  2 , Elliott Vichinsky  2
Affiliations

Transitioning Adolescents With Sickle Cell Disease From Pediatric to Adult Care: Results From a New Survey of Health Care Professionals

Nirmish R Shah et al. J Pediatr Hematol Oncol. .

Abstract

Transition from pediatric to adult care for adolescents and young adults (AYA) with sickle cell disease (SCD) comes at a time when a range of biopsychosocial issues occur simultaneously. A new survey sought information from physicians who treat AYA with SCD about their practices in how they transition pediatric patients to adult care. An online survey to physicians who treat SCD was conducted using SurveyMonkey between November 2019 and January 2020. Of 209 physicians who were contacted, 58 completed the survey; 62.1% treated primarily pediatric patients and 37.9% treated adults. Patient education on transition was regarded as "important" or "very important" by 94.2% of the physicians. Patients' knowledge about their disease and their ability to navigate the health care system were identified as 2 primary barriers to transition (mean 1.30 and 1.67 on a 3-point scale, respectively). Most physicians employ established models to facilitate the transition, including Got Transition (41.3%) and a biopsychosocial model (34.8%), with 34.8% using a mix of models and 23.9% not using an established model. Fewer than half (34.8%) rated their program as "very successful" or "successful." Transition protocols from pediatric to adult care should be re-examined to facilitate successful transition for AYA with SCD.

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Conflict of interest statement

N.R.S. reports receiving research funding, consultancy fees, and speakers bureau fees from Novartis Pharmaceuticals Corporation; research funding, consultancy fees, and speakers bureau fees from GBT; consultancy fees from CSL Behring; and consultancy fees from Blue Bird bio, outside the submitted work. E.V. reports advisory fees from Global Blood Therapeutics, outside the submitted work. M.J.T. declares no conflict of interest.

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