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.

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.