Improving the Transition to Adult Care for Young People with Chronic Kidney Disease

Abstract

The transition from pediatric-to adult-oriented care typically occurs during emerging adulthood, a developmental stage during which the risks of poor treatment adherence and adverse outcomes are elevated. Inadequate support during this change in care environment may augment the risks. With a focus on chronic kidney disease, we will briefly review the evidence linking transition from pediatric-to adult-oriented care to adverse medical, social, and quality of life outcomes, and outline potential reasons for the associations between transition and adverse outcomes. Then we will summarize the recent literature on potential interventions to improve the transition from pediatric-to adult-oriented care. We will examine strategies to improve (1) preparation for transition (including positive youth development, peer mentoring, education, and self-care skill development), (2) the transition process itself (including different models of transition care), and (3) the care structures/systems available for emerging adults within the adult-oriented care environment (including expectations of young people and parents, adaptation of adult care to the emerging adult, and improved education of adult care providers in issues of importance to emerging adults). The perspectives of patients, parents, and healthcare providers will be considered throughout.

Interventions to support adolescents and young adults with the healthcare transition from paediatric to adult nephrology health services: A scoping review protocol

“…A failure to transfer AYAs using carefully planned, well-designed, feasible transition programmes and interventions with the required competencies to manage their condition, may lead to poor attendance at adult nephrology units ( Çiçek & Alpay, 2022 ). In turn, AYAs are placed at high risk of clinical deterioration, resulting in a cascade of negative health outcomes ( Foster & Bell, 2015 ; Kreuzer et al, 2019 ; Prüfe et al , 2022 ; Watson et al, 2011 ). This may be attributed to multiple factors and not exclusively poor attendance to adult clinics, such as non-adherence to medications or medical treatment and regimens, including non-adherence to life-long immunosuppressive regimens, leading to an increased risk of rejection and allograft loss and oftentimes a return to dialysis ( Akchurin et al, 2014 ; Campbell et al, 2016 ; Crawford et al, 2020 ; Dobbels et al, 2010 ; Dobbels et al, 2009 ; Foster, 2015 ; Foster & Bell, 2015 ; Kreuzer et al, 2019 ; Mazzucato et al, 2018 ; Prüfe et al ., 2022 ; Quaglia et al, 2014 ; Wildes et al, 2023 ).…”

“…The importance of an effective transition programme, incorporating well-planned interventions and strategies for young people living with renal disorders is apparent. Studies have demonstrated that the highest rate of kidney transplant loss occurs during the transition years and immediately following transfer of care ( Foster, 2015 ; Foster & Bell, 2015 ; Kreuzer et al, 2019 ; Prüfe et al , 2022 ; Watson et al, 2011 ). Therefore, this age group must be carefully managed, as graft failure often requires a return to dialysis, reducing the patient’s quality of life, increasing morbidity and mortality rates, shortening AYAs life expectancy, and heightening health care expenses ( Prüfe et al ., 2022 ).…”