Providers and Families Weigh in on Delays to Pediatric Kidney Transplant Wait-List Activation

Abstract

Introduction

Timely access to kidney transplant is essential to reducing mortality of children with kidney disease. We examined factors affecting providers’ decisions to delay waitlisting, compared perceptions of important factors of providers to families, when delaying activation, and describe recommendations to improve support for pediatric patients and families to overcome waitlisting delays.

Methods

Using a mixed-methods design, 20 providers and 20 families of pediatric patients with kidney disease, participated in interviews and surveys. Interviews were analyzed using thematic analysis. Surveys were analyzed with descriptive statistics.

Results

Avoiding retransplantation, treatment nonadherence, poor psychological readiness for transplant, poor physical health, and greater need for social support were the key themes affecting providers’ decisions to delay waitlisting. At least 70% of both providers and families felt that waitlisting should be delayed until patients and families had reliable access to transportation, mental health support, and caregivers who can better understand medical information. At least 70% of families surveyed felt it was important to delay waitlisting until they had regulated blood pressure and well-managed labs. Ethical concerns emerge that waitlisting practices may contribute to disparities in access to transplant.

Conclusion

Providers and families agree that stabilizing the family situation and improving adherence to treatment are important reasons to delay waitlisting. However, pediatric patients facing greater disparities need easier access to psychological services, strengthened social support, access to economic resources, and stronger relationships with coordinators. Addressing patient burdens is essential for reaching more equitable listing practices.