Resource use and costs of transitioning from pediatric to adult care for patients with chronic kidney disease

BACKGROUND: The structured transition of adolescents and young adults with chronic kidney disease (CKD) from pediatric to adult care is important, but data on the time and resources required for the necessary components of the transition process and the associated costs are lacking. METHODS: In a prospective single-center cohort study of 52 patients with pre-transplant CKD (CKD stage 1, n = 10; stage 2, n = 6; stage 3, n = 5; stage 4 and 5, 1 patient each) or kidney transplant recipients (KTR), resource use and costs were evaluated for the key elements of a structured transition pathway, including (i) assessment of patients’ disease-related knowledge and needs, (ii) required education and counseling sessions, and (iii) compiling an epicrisis and a transfer appointment of the patient with the current pediatric and the future adult nephrologist. RESULTS: Forty-four of 52 enrolled patients (84.6%) completed the transition pathway and were transferred to adult care. The mean time from the decision to start the transition process until the final transfer consultation was 514 ± 204 days. The process was significantly longer for KTR (624 ± 150 [range, 307–819] days) than for patients with pre-transplant CKD (365 ± 172 [range, 1–693] days; P < 0.0001). The cumulative costs of all counseling and education sessions performed including the transfer appointment were 763 ± 473 Euro; it was significantly higher in KTR (966 ± 457 Euro) than in patients with pre-transplant CKD (470 ± 320 Euro; P < 0.0001). CONCLUSIONS: A structured transition pathway for patients with CKD is resource and time–consuming due to the complexity of the disease and should be sufficiently funded. GRAPHICAL ABSTRACT: [Figure: see text] SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s00467-023-06075-w.