Transition care continuity promotes long-term retention in adult care among young adults with sickle cell disease.

BACKGROUND/OBJECTIVES: Care continuity prevents increased health care utilization and mortality during transition from pediatric to adult care. Our program employs a co-located care delivery model, in which pediatric provider involvement continues during young adulthood. We tested the hypothesis that individuals who participated in the co-located model have greater retention in adult care compared to those who only received pediatric transition services. METHODS: This study consisted of 311 youth with SCD (51.4% male; 63.0% HbSS/HbSß0 -thalassemia) who transferred to adult care from 2007 to 2017. Retention was defined as continuation with an adult provider for ≥12 or ≥24 months post-pediatric care. Logistic regression estimated the association between co-location status and retention at 12 and 24 months. Logistic regression and t-tests were used to evaluate potential predictors of retention in adult care. RESULTS: Individuals who participated in the co-location model were 1.9 times more likely to remain in adult care 12 (95% CI: 1.01, 3.47) and 24 (95% CI: 1.01, 3.70) months post-pediatric care compared to those who did not participate. Individuals with HbSS/HbSß0 -thalassemia were 1.9 times more likely to be retained at 12 months compared to those with HbSC/HbSß+ -thalassemia/HbS/HPFH (95% CI: 1.12, 3.09). For every clinic encounter in the last 2 years of pediatric care, the odds of being retained at least 24 months after initiating adult care increased 1.1 times (95% CI: 1.02, 1.13). CONCLUSIONS: Continuity of providers from pediatric to adult care may increase long-term retention in adult care. Longitudinal monitoring of adult outcomes is critical to identifying the efficacy of transition services.

Cognitive performance as a predictor of healthcare transition in sickle cell disease.

Neurocognitive deficits in sickle cell disease (SCD) may impair adult care engagement. We investigated the relationship between neurocognitive functioning and socio-environmental factors with healthcare transition outcomes. Adolescents aged 15-18 years who had neurocognitive testing and completed a visit with an adult provider were included. Transition outcomes included transfer interval from paediatric to adult care and retention in adult care at 12 and 24 months. Eighty adolescents (59% male, 64% HbSS/HbSß0 -thalassaemia) were included. Mean age at adult care transfer was 18·0 (±0·3) years and transfer interval was 2·0 (±2·3) months. Higher IQ (P = 0·02; PFDR  = 0·05) and higher verbal comprehension (P = 0·008; PFDR  = 0·024) were associated with <2 and <6 month transfer intervals respectively. Better performance on measures of attention was associated with higher adult care retention at 12 and 24 months (P = 0·009; PFDR  = 0·05 and P = 0·04; PFDR  = 0·12 respectively). Transfer intervals <6 months were associated with smaller households (P = 0·02; PFDR  = 0·06) and households with fewer children (P = 0·02; PFDR  = 0·06). Having a working parent was associated with less retention in adult care at 12 and 24 months (P = 0·01; P = 0·02 respectively). Lower IQ, verbal comprehension, attention difficulties and environmental factors may negatively impact transition outcomes. Neurocognitive function should be considered in transition planning for youth with SCD.