Long-Term Satisfaction with Life after Living Kidney Donation: A RELIVE Study

[Clark]

http://www.atcmeetingabstracts.com/abstract/long-term-satisfaction-with-life-after-living-kidney-donation-a-relive-study/

Long-Term Satisfaction with Life after Living Kidney Donation: A RELIVE Study
E. Messersmith, B. Gillespie, B. Hong, C. Jacobs, S. Taler, S. Jowsey, R. Merion, A. Leichtman, C. Beil, C. Gross, the RELIVE Study Group

Background:

Little is known about the long-term satisfaction with life (SWL) of live kidney donors. We surveyed SWL among a population of kidney donors participating in the Renal and Lung Living Donors Evaluation Study (RELIVE).

Methods:

Live kidney donors between 1963 and 2005 at three transplant centers were contacted between 2010 and 2012. A quality of life questionnaire, including measures such as the Satisfaction with Life Scale (Diener, et al 1985), was completed by 2,455 donors. Multiple linear regression was used to identify predictors of SWL, testing demographic characteristics, optimism (measured by the LOT-R) and retrospective recall about donation experiences and outcomes based on responses to specific questions.

Results:

Donors were 15 to 74 years old at donation and 24 to 94 years old at assessment. The majority were female (61%), white or European American (93%), and not Hispanic or Latino (98%). Most donors (87%) were related to their recipients.

SWL scores covered the entire range of the scale (5 to 35) and averaged 26.2 (SD = 6.7). Scores greater than 20 are considered ‘satisfied with life.’ Donors were as satisfied or more satisfied with their lives than previously reported non-donor samples.

Adjusting for demographic characteristics and optimism, SWL subsequent to donation was significantly associated with donation-related experiences. For example, donors who reported having more support from healthcare providers and donors who indicated that the donation had a positive effect on their relationship with the recipient had higher SWL (each p < 0.01). In contrast, donors who reported having problems paying medical bills and routine household bills because of donation and those who reported having had a complication had lower SWL (all p < 0.01). Interestingly, recipient vital and graft status were not significant predictors of SWL.

Conclusions:

Donation-related events are related to later kidney donor SWL. The association between the act of donation and later SWL appeared to be independent of the outcome for the recipient. These findings may reflect cognitive dissonance of donation-related experiences. Strategies focused on improving the donation experience may foster positive long-term donor SWL outcomes.

[Clark]

http://www.atcmeetingabstracts.com/abstract/long-term-quality-of-life-following-living-kidney-donation/

Long-Term Quality of Life Following Living Kidney Donation
N. Siparsky, O. Glotzer, T. Singh, M. Gallichio, D. Conti

Background: The supply of deceased donor kidneys available for transplantation is not sufficient to meet the demand of renal failure patients. Living donor kidney transplantation remains an alternative to deceased donor kidney transplantation. Despite a low rate of complications for donors and superior outcomes for recipients, living kidney donation is on the decline.

Methods: We performed a single-center analysis of living kidney donors (LD) who underwent donor nephrectomy between 1/1/00 and 12/31/10. LD were identified by retrospective review of our transplant database. Candidates were excluded from donation in the setting of a positive cross-match or medical/personal reasons. Donor candidates who were excluded from donation were identified as control subjects (CS). All LD and CS were invited to voluntarily undergo a quality of life assessment using the Short Form 12 v1.0 Questionnaire (SF-12) and an addendum questionnaire (AQ). The SF-12 and AQ were administered by telephone by a single investigator. Statistical analysis of the results was performed to obtain the SF-12 physical component score (PCS) and mental component score (MCS), and the AQ score. PCS and MCS for the general population were obtained from the 1998 National Survey of Functional Health Status.

Results: During the study period, 83 LD and 116 CS were interviewed. LD displayed a statistically significant higher mean PCS when compared to the CS (54.1 vs. 52.2; P= 0.04). LD were noted to have higher PCS (54.1 vs. 49.6) and MCS (55.7 vs 49.4) compared to the general population. 99% of LD felt that their quality of life did not decrease after donation; 21.7% reported experiencing complications during recovery. Half of LD (48%) reported missing one day of work for evaluation; 71% of LD reported missing at least 4 weeks of work after donation. Nearly all LD (99%) would undergo donation again. 52% of LD reported adhering to the recommended two-year follow-up schedule with the transplant team; 87% of LD reported seeing their primary care physician on a regular basis.

Conclusion: This study demonstrates that quality of life does not decrease as a result of living kidney donation. LD are physically and mentally healthier after the donation compared to the general population. Most donors miss at least one month of work after donation and undergo some form of post-donation monitoring. Despite this commitment, living kidney donation is a very satisfying experience.

[Clark]

The issue is not whether or not the majority of us do well and have high personal reporting rates of high quality of life in the long term. THe issue is accurate identification and institutional response to the minority who do have both short and long term adverse effects, medically and socially, as well as quantifying and appropriately responding to any heretofore unsuspected long term adverse outcomes, whether or not we take them in stride, cope well, are resilient, and still feel we made the right decision. You break it, you fix it, even if we maintain a stiff upper lip about it.

[xuewuyang]

THe issue is accurate identification and institutional response to the minority who do have both short and long term adverse effects.

[sherri]

Clark,

I agree. What is clearly lacking is responsibility on part of the transplant centers to the donors and standardization among hospitals is lacking. While one center may have high evaluation standards and support others are much weaker. It is the inconsistency that is troubling. In order to increase the number of living donors, the transplant surgeons seem to be focusing on improved "cosmesis" (the physical scar left from the surgery) and  decreased length of hospital stay. Research has shown that donors are less concerned with the scar as they are with the level of proficiency of the surgeon, their experience, safety and long term health risk. More focus on long term follow and emotional support during pre and post surgery may help the public trust the transplant community. Downplaying the surgery as minimally invasive, donors being healthier and happy after surgery, no cost to the donor, go home after two days and back to work at 2 weeks may not give the full picture.

In term so the study it is difficult to know if the high satisfaction with life (SWL) score is related to the donation surgery or would it had been just as due to other factors even if they had not undergone donation surgery. The personality of the living donor is one that tends to look on the bright side and sees life in a positive light. I haven't read the questionnaire or tools they used to evaluate satisfaction with life (SWL) but it would be difficult to know if the donation was an impact or would the same individuals have the same SWL score had they not donated or done another altruistic or charitable act. But interesting research nonetheless.

Thanks for posting.

Sherri