Patient-reported ratings of transfer to adult care among young adults with chronic kidney disease

Vollständiger Abstract

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Abstract Background Effective healthcare transitions and transfers of care are crucial for improving long-term health outcomes among adolescents and young adults (AYA) with chronic kidney disease (CKD). Patient-reported outcomes are an important tool to understand patient experience and are underused in CKD transfer evaluation. This study sought to preliminarily identify differences in the transfer experience among AYAs with CKD and identify contributing factors. Methods Participants enrolled in the Chronic Kidney Disease in Children (CKiD) study who had transferred to adult care between 2017 and 2024 were included in this analysis ( N = 110). Participants rated their transfer experience on a 1 to 5 Likert scale. Ratings of 4–5 were categorized as “satisfactory” and ratings of 1–3 were categorized as “unsatisfactory.” Factors assessed because of their potential influence on transfer included maternal education, eGFR, dialysis/transplant status, intelligence quotient (IQ), and executive functioning (EF). Logistic regression using a curated set of a priori predictors was used to estimate odds of unsatisfactory transfer. Results The median age of participants at the time of transfer rating was 22.2 years [IQR 20.2–24.4]. The transfer experience was rated as satisfactory by 79 participants (72%) and as unsatisfactory by 31 (28%). Unsatisfactory transfer ratings were more likely among female participants as well as participants with lower health-related quality of life (HRQoL). Maternal education, eGFR, dialysis/transplant, IQ, and EF were not associated with an unsatisfactory transfer experience. Conclusions This study provides initial insight into how AYA with CKD perceive their transfer to adult care. It raises the potential importance of sex and QoL in the transfer process. Although these are not modifiable factors, these preliminary findings lay the foundation for identifying at-risk individuals and developing strategies to improve transfer outcomes.