Long-term quality of life issues among adult-to-pediatric living liver donors: a qualitative exploration

Abstract

Use of live donors as a source of transplantable livers has expanded to include adult recipients. Follow-up reports concerning living donor experiences are short-term and primarily focus on medical outcomes. We present our quality of life findings from a purposive sampling of a cohort of adult-to-pediatric live liver donors, 3-10 years after donation. In-depth interviews conducted among 15 live donors revealed the spectrum of complexity and impact that donation had on the donors. Virtually all donors (14/15) reported that they never really made a decision to donate; rather, agreeing to donate was an automatic leap. Overall, 10 out of the 15 donors related a sense that they were considered nonpatients by the medical team and family members in two primary areas: post operative treatment of pain (6/15) and long-term follow-up care (9/15) with five donors reporting concerns in both areas. Overall, family relationships were believed to have been strengthened by the donation process. Most donors experienced some degree of financial strain with three donors maintaining unrewarding employment to continue healthcare insurance. The majority of donors reported that return to normalcy took a significant amount of time even though no serious medical consequences were experienced. These observations serve to highlight some of the long-term quality of life issues that persist beyond the medical consequences of live donation.