Prevention of Poor Psychosocial Outcomes in Living Organ Donors: From Description to Theory-Driven Intervention Development and Initial Feasibility Testing

Abstract

Context Although some living donors experience psychological, somatic, and interpersonal difficulties postdonation, interventions to prevent such outcomes have not been developed or evaluated. Objective To (a) summarize empirical evidence on postdonation psychosocial outcomes, (b) describe a theoretical framework to guide development of an intervention to prevent poor outcomes and (c) describe development and initial evaluation of feasibility and acceptability of the intervention. Methods Based on a narrative literature review suggesting that individuals ambivalent about donation are at risk for poor postdonation psychosocial outcomes, the intervention targeted this risk factor. Intervention structure and content drew on motivational interviewing principles in order to assist prospective donors to resolve ambivalence. Data were collected on donor characteristics at our institution to determine whether they constituted a representative population in which to evaluate the intervention. Study participants were then recruited to assess intervention feasibility and acceptability. They were required to have scores > 0 on the Simmons Ambivalence Scale (indicating at least some ambivalence about donation). Results Our population was similar to the national living donor population on most demographic and donation-related characteristics. Eight individuals approved to donate either a kidney or liver segment were enrolled for intervention pilot testing. All successfully completed the 2-session telephone-based intervention before scheduled donation surgery. Participant ratings of acceptability and satisfaction were high. Open-ended comments indicated that the intervention addressed participants’ thoughts and concerns about the decision to donate. Conclusions The intervention is feasible, acceptable, and appears relevant to donor concerns. A clinical trial to evaluate intervention efficacy is warranted.

Emotional and Financial Experiences of Kidney Donors over the Past 50 Years

“…However, these experiences are not universal. Predonation ambivalence, compromised mental health, strained relationship with the recipient, lack of financial resources, and pressure regarding donation are associated with poor psychological outcomes (14)(15)(16)(17)(18)(19)(20)(21)(22). Postdonation factors, such as lack of support, complications, or lack of health insurance, may prevent donors from seeking recommended medical or psychological follow-up, further interfering with recovery.…”

Informed Consent of Living Kidney Donors: Pitfalls and Best Practice

“…Lacking desire to proceed is a straightforward contraindication to living organ donation [17]. However, sustained ambivalence and experience of 'pressure' (internal and external) around organ donation decision making is not uncommon [17,24,25]. For the purposes of LD candidacy, 'not deciding' about donation must be the same as 'deciding not to' proceed, a crucial standard to communicate to the profoundly ambivalent potential donor, who has not decided to proceed, but who also has not elected to close out the donation process.…”

“…In best practice, transplant programs employ various strategies to assist prospective donors struggling with ambivalence, including a 'cooling off period' [25,16,17], a 'scaling system' of readiness, referral for counseling/support, and, most recently by Dew et al, use of motivational interviewing approaches [24,25]. Of note, literature suggests that donors who describe ambivalence at the time of donation are at higher risk for a poor psychosocial outcome [24][25][26].…”

“…Of note, literature suggests that donors who describe ambivalence at the time of donation are at higher risk for a poor psychosocial outcome [24][25][26]. Best practice explores the prospective donor's readiness, or stage of decision making, as a process: the psychosocial provider (and/or the ILDA) conducts repeat assessment of the prospective donor's desire to proceed after s/he has completed medical evaluation, and been educated about individualized risk profile and LDT expected outcomes [25].…”

“…These donors (and especially bridge donors) should also consent to process differences (e.g., timing unpredictability; potential for additional testing) [55]. NDDs and LDs for paired exchange should be advised of confidentiality guidelines limiting information exchange about 'actual' recipient outcomes, particularly as this information has been linked to donor satisfaction [24,[54][55][56][57].…”