Critical Factors Associated With Missing Follow-Up Data for Living Kidney Donors in the United States

Schold, Jesse D.; Buccini, Laura D.; Rodrigue, James R.; Mandelbrot, Didier A.; Goldfarb, David A.; Flechner, Stuart M.; Kayler, Liise K.; Poggio, Emilio D.

doi:10.1111/ajt.13282

Cited by 46 publications

(70 citation statements)

References 41 publications

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“…While our follow-up rates compare favorably to this national survey, our level of attrition for survey and laboratory data is inconsistent with maintaining a robust follow-up program that meets the new OPTN policy requiring clinical and laboratory data on 80% and 70% of LKDs, respectively, through the two year time point. Moreover, like others (Schold et al, in press; Weng et al, 2012), we found that minorities were less likely to participate in follow-up care after donation, which is concerning in light of recent data on the increased risk of adverse long-term outcomes among some minority donors (Mjøen et al, 2014; Muzaale et al, 2014). We have engaged our Living Donor Advisory Group to help develop a strategy for improving outcomes assessment, and we are developing an electronic system for capturing survey outcomes, clinical information, and laboratory data.…”

Section: Discussionsupporting

confidence: 65%

“…We have engaged our Living Donor Advisory Group to help develop a strategy for improving outcomes assessment, and we are developing an electronic system for capturing survey outcomes, clinical information, and laboratory data. More focused attention on how best to gather follow-up data from donors at higher risk of being lost to follow-up (e.g., uninsured, younger, minorities) is urgently needed in this climate of increased regulatory oversight (Schold, Buccini, Rodrigue, et al, In Press). These strategies might include more frequent contact with LKDs, telephone-based and electronic surveys, and small incentives for survey completion.…”

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

Patient-Reported Outcomes Following Living Kidney Donation: A Single Center Experience

Rodrigue

Vishnevsky

Fleishman

et al. 2015

J Clin Psychol Med Settings

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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.

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Section: Discussionsupporting

confidence: 65%

Section: Discussionmentioning

confidence: 99%

Patient-Reported Outcomes Following Living Kidney Donation: A Single Center Experience

Rodrigue

Vishnevsky

Fleishman

et al. 2015

J Clin Psychol Med Settings

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“…[28] The lack of health insurance at the time of donation also may affect compliance with follow-up for the two years required by UNOS/OPTN and beyond. Consistent with data reported by Schold et al[29], we found that uninsured adults at time of donation were less likely to have 6, 12, and 24 month SCr values reported in the UNOS/OPTN database. Failure to attend to required follow-up poses risk for both the donor (i.e., lack of health assessment) and transplant program (i.e., failure to meet minimum thresholds for donor follow-up and probationary disposition).…”

Section: Discussionsupporting

confidence: 92%

“…Failure to attend to required follow-up poses risk for both the donor (i.e., lack of health assessment) and transplant program (i.e., failure to meet minimum thresholds for donor follow-up and probationary disposition). [1] Improved donor follow-up care is a unifying call to action within the transplant community[8,29–33]; however, a standardized approach for how to deliver (and pay for) such care to uninsured LKDs is lacking.…”

Section: Discussionmentioning

confidence: 99%

Health Insurance Trends in United States Living Kidney Donors (2004 to 2015)

Rodrigue

Fleishman

2016

American Journal of Transplantation

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Some transplant programs consider the lack of health insurance as a contraindication to living kidney donation. Still, prior studies have shown that many adults are uninsured at time of donation. We extend the study of donor health insurance status over a longer time period and examine associations between insurance status and relevant sociodemographic and health characteristics. We queried the UNOS/OPTN registry for all living kidney donors (LKDs) between July 2004 and July 2015. Of the 53,724 LKDs with known health insurance status, 8,306 (16%) were uninsured at the time of donation. Younger (18 to 34 years old), male, minority, non-employed, less educated, non-married LKDs and those who were smokers and normotensive were more likely to not have health insurance at the time of donation. Compared to those with no health risk factors (i.e., obesity, smoking, hypertension, eGFR, proteinuria)(14%), LKDs with 1 (18%) or ≥2 (21%) health risk factors at the time of donation were more likely to be uninsured (P<0.0001). Among those with ≥2 health risk factors, blacks (28%) and Hispanics (27%) had higher likelihood of being uninsured compared to whites (19%; P<0.001). Study findings underscore the importance of providing health insurance benefits to all previous and future LKDs.

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“…[1] However, recent studies show that when donors are followed over longer observation periods, there is an increased risk of end-stage renal disease (ESRD), reproductive complications, and hypertension. [2-4] There is also a dearth of systematic long-term psychosocial follow-up.…”

Section: Introductionmentioning

confidence: 99%

Living Kidney Donors Who Develop Kidney Failure: Excerpts of Their Thoughts

et al. 2016

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Background: Psychosocial data about living kidney donors have been collected for almost 5 decades now. To date, however, no study has provided any psychosocial follow-up of donors who developed a serious health problem such as end-stage renal disease (ESRD). Methods: Donors who developed ESRD were invited to participate in a qualitative interview if they met one or both of the inclusion criteria: (1) developed ESRD within 10 years of donating and/or (2) lacked health insurance at the time of donation. We contacted 38 individuals who met these criteria, and 22 participated (58%). Two were subsequently excluded from analysis. Results: Twenty qualitative interviews were analyzed. Five findings are described: (1) donors describe the decision-making process as spontaneous and fast; (2) donors describe lack of appreciation for the need for post-donation self-care; (3) donors do not regret donating despite the adverse outcome; (4) donors advise future donors to have in place emotional and physical support post donation; and (5) donors appreciate the opportunity to tell their story from being a living donor to living with ESRD, which virtually all perceive as 2 separate unrelated events. Conclusions: Most donors are positive about their donation decision and experience and would donate again, despite developing ESRD themselves. They propose some important changes to the decision-making and informed-consent processes. Our data are reassuring regarding lack of donor regret, but highlight the need for living donor transplant programs to ensure that living donors understand their long-term risks and receive appropriate life-long follow-up care to minimize these risks.

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Critical Factors Associated With Missing Follow-Up Data for Living Kidney Donors in the United States

Cited by 46 publications

References 41 publications

Patient-Reported Outcomes Following Living Kidney Donation: A Single Center Experience

Patient-Reported Outcomes Following Living Kidney Donation: A Single Center Experience

Health Insurance Trends in United States Living Kidney Donors (2004 to 2015)

Living Kidney Donors Who Develop Kidney Failure: Excerpts of Their Thoughts

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