When Good Intentions Are Not Enough: Obtaining Follow-Up Data in Living Kidney Donors

Abstract

The Organ Procurement Transplant Network/United Network for Organ Sharing (OPTN/UNOS) has increased the amount of data collected before and after donation and increased the duration of donor followup to 2 years, yet there is evidence that reporting is incomplete. We examined the frequency of missing data in the OPTN/UNOS donor follow-up registry and found that reporting rates were low, particularly for donors who may have limited access to health care. We argue that a national donor follow-up registry is essential to ensure transparency in ascertaining long-term health outcomes among all living donors and in providing assessments of quality assurance within transplant programs. We have suggested approaches to strengthen the donor follow-up registry system. These include setting clear and high standards for follow-up reporting, a system of incentives and penalties that would motivate transplant centers to comply with these standards and would encourage donors to follow-up and lifelong follow-up reporting by primary care providers. We argue that the US government must provide funding to support a donor follow-up registry that can allow for meaningful and valid conclusions, in recognition of donors' public service and to maintain trust in the system of living organ donation.

Understanding Antihypertensive Medication Use after Living Kidney Donation through Linked National Registry and Pharmacy Claims Data

“…Gibney et al [27] reported that, overall, 18% of living donors in a recent US sample lacked insurance at donation, and insurance access varied demographically, such that 30-40% of young, African-American male donors were uninsured. Further, follow-up reporting deficiencies by centers are greater in these groups [6]. A commitment to follow-up and basic healthcare access is critical so that donors who have or develop conditions such as hypertension can be recognized and treated.…”

“…The limited scope and 2-year duration of national registry follow-up is inadequate to characterize the long-term health of US living donors [4,5,6]. Innovative approaches to capturing outcomes among representative, diverse samples of living donors are needed.…”

“…Importantly, despite the growth and expansion of living donation, mandated follow-up of living donors in the USA has been limited in scope, duration and completeness. Currently, the Organ Procurement and Transplantation Network (OPTN) collects data on living donors for only 2 years of follow-up [4], and incomplete reporting and donor loss to follow-up have been common [5,6]. While OPTN/United Network for Organ Sharing (UNOS) policies were modified in 2013 to include mandated thresholds for collection of follow-up information by centers, compliance with these thresholds could still leave missing data (up to 20% missing for clinical and 30% for laboratory results) [4], and the predictive value of information at 2 years for important dimensions of long-term donor health is uncertain.…”

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

“…Transplant centers have variable infrastructure and resources to continually monitor donors as well as varying geographic distribution from which donors travel (12)(13)(14)(15). Donors have variable access to healthcare, health literacy, and motivation to seek medical care among other factors which may impact the ability of a center to capture donor follow-up data (16)(17)(18)(19)(20). For example, roughly one-fifth of donors are reported to have no health insurance at the time of donation which may impact access to follow-up care (21).…”

“…Complete follow-up at 6, 12, and 24 months was 67%, 60%, and 50% for clinical and 51%, 40%, and 30% for laboratory data, respectively, but have improved over time. Donor risk factors for missing laboratory data included younger age [18][19][20][21][22][23][24][25][26][27][28][29][30][31][32][33][34] (adjusted odds ratio [AOR] ¼ 2.03, 1.58-2.60), black race (AOR ¼ 1.17, 1.05-1.30), lack of insurance (AOR ¼ 1.25, 1.15-1.36), lower educational attainment (AOR ¼ 1.19, 1.06-1.34), >500 miles to center (AOR ¼ 1.78, 1.60-1.98), and centers performing >40 living donor transplants/year (AOR ¼ 2.20, 1.21-3.98). Risk-adjustment moderately shifted classification of center compliance with UNOS standards.…”