Understanding the Healthcare Needs of Living Kidney Donors Using the Picker Principles of Patient-centered Care: A Scoping Review

Abstract

Living kidney donors (LKDs) undertake a complex and multifaceted journey when pursuing donation and have several unmet healthcare needs. A comprehensive understanding of these needs across their entire donation trajectory can help develop a patient-centered care model. We conducted a scoping review to synthesize empirical evidence, published since 2000, on LKDs’ experiences with healthcare from when they decided to pursue donation to postdonation care, and what they reported as their care needs. We categorized them according to the 8 Picker principles of patient-centered care. Of the 4514 articles screened, 47 were included. Ample literature highlighted the need for (1) holistic, adaptable, and linguistically appropriate approaches to education and information; (2) systematic, consistent, and proactive coordination and integration of care; and (3) self-management and preparation to optimize perioperative physical comfort. Some literature highlighted the need for (4) better continuity and transition of care postdonation. Two key unmet needs were the lack of (5) a holistic psychosocial evaluation predonation and predischarge to provide emotional support and alleviation of fear and anxiety; and (6) access to specialty and psychosocial services postdonation especially when adverse events occurred. Limited literature explored the principles of (7) respect for patients’ values, preferences, and expressed needs; and (8) involvement of family and friends as caregivers. We summarize several unmet healthcare needs of LKDs throughout their donation journey and highlight knowledge gaps. Addressing them can improve their well-being and experiences, and potentially address inequities in living kidney donation and increase living donor kidney transplantation.