Session Name: Kidney: Pediatrics
Session Date & Time: None. Available on demand.
*Purpose: Since timely access to kidney transplant mediates mortality of children with kidney disease, we examined which factors most commonly affect providers’ decision-making to delay wait-listing, compared provider and family perspectives about the importance of these factors, and determined recommendations to overcome factors affecting delays.
*Methods: Using a mixed method design, 20 providers and 20 family members responded to 25 open-ended questions. 33 participants completed a survey of closed-ended questions on the importance of dimensions that delay waitlist activation. Interviews were analyzed using thematic analysis. Providers were 65% nephrologists, 10% coordinators, 15% surgeons or 10% social workers from 17 pediatric transplant centers. Families included patients who were post-transplant 50%, patients with history of dialysis 95%, single parent household 50%; patient ages ranged 2-21 years.
*Results: Themes named by providers affecting waitlist delays included avoiding retransplantation, the presence of an unstable family environment, primary disease (e.g., FSGS), pervasive nonadherence and poor psychological readiness for transplant care. Families similarly described challenges related to family instability or patient health problems, which were often adherence or psychiatric-related. Although families generally agreed with providers’ choices to delay waitlisting, they expressed stress and burdens from remaining on dialysis. These burdens, especially financial, raise ethical concerns that current practices may contribute to disparities in access to transplant. Families recommended earlier psychological treatment, positive relationships with coordinators, more social support, and financial help from governmental programs to reduce delays.
*Conclusions: Both providers and families agree that stabilizing the family situation and adherence to treatment are important reasons to delay wait-listing. However, patients and family members need more support from transplant centers to overcome these challenges.
|Percentage ranked factor important||Family||Provider|
|Knowledge of transplant complications||n/a||94%|
|Back up caregiver available||47%||67%|
|Phosphorus, Hemoglobin in goal||87%||47%|
|Symptoms prevent school attendance||60%||28%|
To cite this abstract in AMA style:Farkas-Skiles CM, Feinsinger A, Pines R, Waterman AD. Understanding Delays to Pediatric Kidney Transplant Wait-List Activation: Providers and Families Weigh in [abstract]. Am J Transplant. 2021; 21 (suppl 3). https://atcmeetingabstracts.com/abstract/understanding-delays-to-pediatric-kidney-transplant-wait-list-activation-providers-and-families-weigh-in/. Accessed June 16, 2021.
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