Patient-Reported Outcomes Following Living Kidney Donation: A Single Center Experience
- 264 Downloads
This article describes the development and implementation of an initiative at one transplant center to annually assess psychosocial outcomes of living kidney donors. The current analysis focuses on a cohort of adults (n = 208) who donated a kidney at BIDMC between September 2005 and August 2012, in which two post-donation annual assessments could be examined. One and two year post-donation surveys were returned by 59 % (n = 123) and 47 % (n = 98) of LKDs, respectively. Those who did not complete any survey were more likely to be younger (p = 0.001), minority race/ethnicity (p < 0.001), and uninsured at the time of donation (p = 0.01) compared to those who returned at least one of the two annual surveys. The majority of donors reported no adverse physical or psychosocial consequences of donation, high satisfaction with the donation experience, and no donation decision regret. However, a sizable minority of donors felt more pain intensity than expected and recovery time was much slower than expected, and experienced a clinically significant decline in vitality. We describe how these outcomes are used to inform clinical practice at our transplant center as well as highlight challenges in donor surveillance over time.
KeywordsLiving donation Kidney donation Psychosocial Outcomes
Beth Israel Deaconess Medical Center
Body mass index
Living kidney donor
National Living Donor Assistance Center
Organ Procurement and Transplantation Network
Quality Assessment and Performance Improvement
Reliable Change Index
United Network for Organ Sharing
We are grateful to the following individuals for their assistance in the implementation of this initiative: Jonathan Berkman, Jodi-Ann Dattadeen, Lauren Finnigan, Betsy Gray-Chrzan, Douglas Hanto, Alexa Hiley, Linda Lentz, Maeve Moore, Matthew Paek, Denny Tsai, and Linda Walsh. Preparation of this article was supported by Award Number R01DK085185 (Rodrigue, Mandelbrot, Pavlakis) from the National Institute of Diabetes and Digestive and Kidney Diseases. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institute of Diabetes and Digestive and Kidney Diseases or the National Institutes of Health.
Conflict of Interest
The authors declare that they have no conflict of interest.
Human and Animal Rights and Informed Consent
All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation of the Beth Israel Deaconess Medical Center whose Institutional Review Board approved the protocol for data collection and use as “Exempt,” and so ruled that informed consent was not required. Additionally, all procedures followed were in accordance with the Helsinki Declaration of 1975, as revised in 2000.
- Clemens, K.K., Thiessen-Philbrook, H., Parikh, C.R., Yang, R.C., Karley, M.L., Boudville, N., … Donor Nephrectomy Outcomes Research (DONOR) Network.(2006). Psychosocial health of living kidney donors: A systematic review. American Journal of Transplantation, 6, 2965–2977.Google Scholar
- Gross, C. R., Messersmith, E. E., Hong, B. A., Jowsey, S. G., Jacobs, C., Gillespie, B. W., & RELIVE Study Group. (2013). Health-related quality of life in kidney donors from the last five decades: Results from the RELIVE study. American Journal of Transplantation, 13, 2924–2934.PubMedCentralCrossRefPubMedGoogle Scholar
- Hebden, L., Balestracci, K., McGeechan, K., Denney-Wilson, E., Harris, M., Bauman, A., & Allman-Farinelli, M. (2013). ‘TXT2BFiT’ a mobile phone-based healthy lifestyle program for preventing unhealthy weight gain in young adults: Study protocol for a randomized controlled trial. Trials, 14, 75–83.PubMedCentralCrossRefPubMedGoogle Scholar
- Jowsey, S.G., Jacobs, C., Gross, C.R., Hong, B.A., Messersmith, E.E., Gillespie, B.W., … the RELIVE Study Group. (2014). Emotional well-being of living kidney donors: Findings from the RELIVE Study. American Journal of Transplantation, 14, 2535–2544.Google Scholar
- Klarenbach, S., Gill, J. S., Knoll, G., Caulfield, T., Boudville, N., Prasad, G. V., … Donor Nephrectomy Outcomes Research (DONOR) Network. (2014). Economic consequences incurred by living kidney donors: A Canadian multi-center prospective study. American Journal of Transplantation, 14, 916–922.PubMedCentralCrossRefPubMedGoogle Scholar
- Leichtman, A., Abecassis, M., Barr, M., Charlton, M., Cohen, D., … Matas, A.J. (2011). Living kidney donor follow-up: state-of-the-art and future directions, conference summary and recommendations. American Journal of Transplantation, 11, 2561–2568.Google Scholar
- Organ Procurement and Transplantation Network (OPTN). (2013). Policy 12.0: Living donation. http://optn.transplant.hrsa.gov/converge/policiesandbylaws2/policies/pdfs/policy_172.pdf. Accessed January 17, 2015.
- Organ Procurement and Transplantation Network (OPTN) and Scientific Registry of Transplant Recipients (SRTR). (2014). OPTN/SRTR 2012 Annual Data Report. Rockville, MD: Department of Health and Human Services, Health Resources and Services Administration, Healthcare Systems Bureau, Division of Transplantation.Google Scholar
- Rodrigue, J. R., Pavlakis, M., Danovitch, G. M., Johnson, S. R., Karp, S. J., Khwaja, K., … Mandelbrot, D. A. (2007). Evaluating living kidney donors: Relationship types, psychosocial criteria, and consent processes at US transplant programs. American Journal of Transplantation, 7, 2326–2332.CrossRefPubMedGoogle Scholar
- Schold, J.D., Buccini, L.D., Rodrigue, J.R., Mandelbrot, D., Goldfarb, D.A., Flechner, S.M., Kayler, L.K., & Poggio, E.D. (2015). Critical factors associated with missing follow-up data for living kidney donors in the United States. Clinical Journal of the American Society of Nephrology. doi: 10.1111/ajt.13282.
- Ware, J. E., Kosinski, M., & Dewey, J. E. (2000). How to score version two of the SF-36 Health Survey. Lincoln, RI: QualityMetric Inc.Google Scholar