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Development of quality indicators for transition from pediatric to adult care in sickle cell disease: A modified Delphi survey of adult providers
Author(s) -
Sobota Amy E.,
Shah Nishita,
Mack Jennifer W.
Publication year - 2017
Publication title -
pediatric blood and cancer
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.116
H-Index - 105
eISSN - 1545-5017
pISSN - 1545-5009
DOI - 10.1002/pbc.26374
Subject(s) - medicine , delphi method , adult care , young adult , quality (philosophy) , family medicine , disease , quality of life (healthcare) , medline , pediatrics , gerontology , nursing , philosophy , statistics , mathematics , epistemology , pathology , political science , law
Background Transition from pediatric to adult care is a vulnerable time for young adults with sickle cell disease (SCD); however, improvements in transition are limited by a lack of quality indicators. The purpose of this study was to establish quality indicators for transition in SCD and to determine the optimal timing between the final pediatric visit and the first adult provider visit. Procedure We conducted a modified Delphi survey to reach a consensus on which quality indicators are most important for a successful transition. Our expert panel consisted of members of the Sickle Cell Adult Provider Network. In the first round, the participants ranked a list of quality indicators by importance. In the second round, the participants chose their “top 5” quality indicators in terms of importance and also ranked them on feasibility. Results The response rates for the two rounds were 68 and 96%, respectively. Nine quality indicators were chosen as “top 5” by a majority of respondents, including communication between pediatric and adult providers, timing of first adult visit, patient self‐efficacy, quality of life, and trust with their adult provider. Based on the comments from round 1, respondents were also asked for the optimal timing between leaving pediatric care and entering adult care. Most recommended a first adult visit within 2 months of the final pediatric visit. Conclusions By using these quality indicators chosen by the majority of respondents, we can better develop and evaluate transition programs for young adults with SCD and improve health outcomes for these vulnerable patients.