The Living Donation Expectancies Questionnaire: Are Pre-Donation Expectations Realized One Year after Living Kidney Donation?

Abstract

Introduction: The Living Donation Expectancies Questionnaire (LDEQ) measures the potential donor's expectations for the donation experience. We developed a post-donation version of the LDEQ and assessed the degree to which pre-donation expectancies were realized one year following donation. Method: The LDEQ was completed pre-donation and one year after surgery. The LDEQ comprises 42 statements (“As an organ donor, I expect…”) to which individuals respond using a 5-point Likert scale (0=strongly disagree, 1=disagree, 2=neutral, 3=agree, 4=strongly agree) and it has six subscales: Interpersonal Benefit, Personal Growth, Spiritual Benefit, Quid Pro Quo, Health Consequences, and Miscellaneous Consequences. Donor age, sex, race/ethnicity, and relationship to the recipient were collected from medical records. For analytic purposes, high expectations were defined as a mean subscale score greater than the total number of items multiplied by two (i.e., higher than neutral response). Results: Two hundred twenty-three adults provided pre-post LDEQ data. Mean age was 44.0 (±12), 60% were female, 84% were White (5% Black, 4% Hispanic, 2% Asian), and 61% were biologically related to the recipient. Total expectancy scores at baseline and at one-year follow-up were not significantly associated with donor age, sex, race, or relationship status (all P values>0.05). Overall, mean subscale scores at 1-yr post-donation showed that donor baseline expectations were met or exceeded on 4 of the 6 LDEQ subscales (Figure 1).[Figure 1]Younger donors reported a higher change in Quid Pro Quo expectations from baseline to follow-up (r=-.18, p=0.008). Relative to baseline expectancies, a higher percentage of donors at the 1-year follow-up reported feelings of Interpersonal Benefit (22% vs. 72%, P< 0.0001), Personal Growth (57% vs. 86%, P< 0.0001), Spiritual Benefit (13% vs. 36%, P< 0.0001), and Quid Pro Quo (2% vs. 18%, P=0.004). The five most frequently endorsed LDEQ items (agree or strongly agree) at the 1-year after donation were: 1) Being able to accept the way that things have worked out (90%), 2) Feeling that donation has improved the life of the recipient (88%), 3) Feeling proud of oneself (80%), 4) Being respected and admired by family members and friends (77%), and 5) Having an increased appreciation for the value of one's own life (71%). Conclusion: The pre-surgery expectations of living kidney donors are generally met or exceeded a year after donation. A substantial percentage of donors report positive interpersonal benefit and personal growth as a result of the donation experience. Future research will examine whether these benefits are sustained over a longer time period. The LDEQ is a reliable and valid measure to assess donor expectancies, both before and after living donation.