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Identifying Outcomes that Are Important to Living Kidney Donors: A Nominal Group Technique Study.

ABSTRACT: BACKGROUND AND OBJECTIVES:Living kidney donor candidates accept a range of risks and benefits when they decide to proceed with nephrectomy. Informed consent around this decision assumes they receive reliable data about outcomes they regard as critical to their decision making. We identified the outcomes most important to living kidney donors and described the reasons for their choices. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS:Previous donors were purposively sampled from three transplant units in Australia (Sydney and Melbourne) and Canada (Vancouver). In focus groups using the nominal group technique, participants identified outcomes of donation, ranked them in order of importance, and discussed the reasons for their preferences. An importance score was calculated for each outcome. Qualitative data were analyzed thematically. RESULTS:Across 14 groups, 123 donors aged 27-78 years identified 35 outcomes. Across all participants, the ten highest ranked outcomes were kidney function (importance=0.40, scale 0-1), time to recovery (0.27), surgical complications (0.24), effect on family (0.22), donor-recipient relationship (0.21), life satisfaction (0.18), lifestyle restrictions (0.18), kidney failure (0.14), mortality (0.13), and acute pain/discomfort (0.12). Kidney function and kidney failure were more important to Canadian participants, compared with Australian donors. The themes identified included worthwhile sacrifice, insignificance of risks and harms, confidence and empowerment, unfulfilled expectations, and heightened susceptibility. CONCLUSIONS:Living kidney donors prioritized a range of outcomes, with the most important being kidney health and the surgical, lifestyle, functional, and psychosocial effects of donation. Donors also valued improvements to their family life and donor-recipient relationship. There were clear regional differences in the rankings.

SUBMITTER: Hanson CS

PROVIDER: S-EPMC5989678 | biostudies-literature | 2018 Jun

REPOSITORIES: biostudies-literature

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Identifying Outcomes that Are Important to Living Kidney Donors: A Nominal Group Technique Study.

Hanson Camilla S CS Chapman Jeremy R JR Gill John S JS Kanellis John J Wong Germaine G Craig Jonathan C JC Teixeira-Pinto Armando A Chadban Steve J SJ Garg Amit X AX Ralph Angelique F AF Pinter Jule J Lewis Joshua R JR Tong Allison A

Clinical journal of the American Society of Nephrology : CJASN 20180531 6

<h4>Background and objectives</h4>Living kidney donor candidates accept a range of risks and benefits when they decide to proceed with nephrectomy. Informed consent around this decision assumes they receive reliable data about outcomes they regard as critical to their decision making. We identified the outcomes most important to living kidney donors and described the reasons for their choices.<h4>Design, setting, participants, & measurements</h4>Previous donors were purposively sampled from thre ...[more]

PMID: 29853616

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Project description:Data regarding health outcomes among living kidney donors are lacking, especially among nonwhite persons.We linked identifiers from the Organ Procurement and Transplantation Network (OPTN) with administrative data of a private U.S. health insurer and performed a retrospective study of 4650 persons who had been living kidney donors from October 1987 through July 2007 and who had post-donation nephrectomy benefits with this insurer at some point from 2000 through 2007. We ascertained post-nephrectomy medical diagnoses and conditions requiring medical treatment from billing claims. Cox regression analyses with left and right censoring to account for observed periods of insurance benefits were used to estimate absolute prevalence and prevalence ratios for diagnoses after nephrectomy. We then compared prevalence patterns with those in the 2005-2006 National Health and Nutrition Examination Survey (NHANES) for the general population.Among the donors, 76.3% were white, 13.1% black, 8.2% Hispanic, and 2.4% another race or ethnic group. The median time from donation to the end of insurance benefits was 7.7 years. After kidney donation, black donors, as compared with white donors, had an increased risk of hypertension (adjusted hazard ratio, 1.52; 95% confidence interval [CI], 1.23 to 1.88), diabetes mellitus requiring drug therapy (adjusted hazard ratio, 2.31; 95% CI, 1.33 to 3.98), and chronic kidney disease (adjusted hazard ratio, 2.32; 95% CI, 1.48 to 3.62); findings were similar for Hispanic donors. The absolute prevalence of diabetes among all donors did not exceed that in the general population, but the prevalence of hypertension exceeded NHANES estimates in some subgroups. End-stage renal disease was identified in less than 1% of donors but was more common among black donors than among white donors.As in the general U.S. population, racial disparities in medical conditions occur among living kidney donors. Increased attention to health outcomes among demographically diverse kidney donors is needed. (Funded by the National Institute of Diabetes and Digestive and Kidney Diseases and others.)

Project description:Background and objectivesThe unmet demand for kidney transplantation has generated intense controversy about introducing incentives for living kidney donors to increase donation rates. Such debates may affect public perception and acceptance of living kidney donation. This study aims to describe the range and depth of public opinion on financial reimbursement, compensation, and incentives for living kidney donors.Design, setting, participants, & measurementsTwelve focus groups were conducted with 113 participants recruited from the general public in three Australian states in February 2013. Thematic analysis was used to analyze the transcripts.ResultsFive themes were identified: creating ethical impasses (commodification of the body, quandary of kidney valuation, pushing moral boundaries), corrupting motivations (exposing the vulnerable, inevitable abuse, supplanting altruism), determining justifiable risk (compromising kidney quality, undue harm, accepting a confined risk, trusting protective mechanisms, right to autonomy), driving access (urgency of organ shortage, minimizing disadvantage, guaranteeing cost-efficiency, providing impetus, counteracting black markets), and honoring donor deservingness (fairness and reason, reassurance and rewards, merited recompense). Reimbursement and justifiable recompense are considered by the Australian public as a legitimate way of supporting donors and reducing disadvantage. Financial payment beyond reimbursement is regarded as morally reprehensible, with the potential for exploitative commercialism. Some contend that regulated compensation could be a defensible strategy to increased donation rates provided that mechanisms are in place to protect donors.ConclusionsThe perceived threat to community values of human dignity, goodwill, and fairness suggests that there could be strong public resistance to any form of financial inducements for living kidney donors. Policy priorities addressing the removal of disincentives may be more acceptable to the public.

Project description:Background Offering living kidney donation raised the concern that donors are exposed to unknown risks. All Swiss transplant centres therefore decided to start a prospective cohort study of living kidney donors in Switzerland. This paper describes the rationale for and implementation of this cohort study. Methods/design All kidney donors in Switzerland are registered and examined before donation and biennially after donation starting in the first year after nephrectomy. Before each follow-up visit, the study centre sends a package to the kidney donor containing the health questionnaire, blood and urine tubes and a prepaid envelope for sending the samples to the central laboratory. The donor makes an appointment with their family physician, who examines the donor and reports findings such as pain and other complaints, blood pressure, creatinine, albumin, all major health events and the state of mental and social well-being to the study centre. The family doctor draws the blood sample and mails it with the urine sample in the prepaid envelope. All data are centrally managed. All abnormal findings in the follow-up of individual donors are regularly discussed with the principal investigator, and necessary clinical changes made and recorded in the database. The health insurance of the recipient covers all costs of the donor follow-up. The main outcomes are the occurrence of albuminuria, hypertension and renal insufficiency. The secondary outcomes are major somatic and social events such as death, cardiovascular disease, stroke and depression. Discussion This prospective cohort offers unique opportunities to assess the risks of living kidney donation and will allow us to examine the risks associated with the methods used for nephrectomy in Switzerland (various forms of open surgery and laparoscopic nephrectomy). The prospective collection of all clinically relevant data and the regular monitoring of donors will allow timely interventions at early stages before serious kidney and general health problems occur.

Dataset Information

Identifying Outcomes that Are Important to Living Kidney Donors: A Nominal Group Technique Study.

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Identifying Outcomes that Are Important to Living Kidney Donors: A Nominal Group Technique Study.

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