ArticleJournal of pediatric psychology2026
The transition from pediatric to adult healthcare in spina bifida: an interview-based measure.
Article in Journal of pediatric psychology, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
objectiveThis study presents a novel interview and coding system to assess the transition from pediatric to adult healthcare in individuals with spina bifida (SB). Inter-rater reliability, descriptive data, and demographic and condition severity correlates are reported.
methodsYoung adults with SB, aged 19-26 at Time 6 (n = 86) of a longitudinal study, completed the Transition to Adult Healthcare in Young Adults with Spina Bifida Interview which assessed: (1) the transition status (pediatric vs. adult) of primary care providers, (2) the transition status of specialist providers, (3) transition-related discussions and meetings with health professionals, (4) subjective reports of transition status, and (5) self-reports of how medical complications/emotional problems are managed during the transition.
resultsFindings revealed high levels of inter-rater reliability. A large percentage (30%-48%) reported having specialty providers who were pediatric-oriented. Half reported that they had not had a transition-related discussion or were advised not to begin the transition process. Roughly half reported that they had not transitioned or were still in the planning phase. Most reported that they could make their own decisions regarding medical complications, but felt less able to assess the urgency of a complication, the need for action, or how to prevent a complication. Shunt status was associated with several transition status indicators.
conclusionsThis study supports the use of an interview-based measure in young adults with SB. Findings revealed that a large percentage of young adults aged 19-26 had not transitioned to adult healthcare and felt ill-equipped to manage health complications.
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