Barriers to and outcomes of unspecified kidney donation in the UK: BOUnD, a mixed-methods study.

Abstract

Background: Unspecified living kidney donation, where an individual donates a kidney to a stranger, is practised in very few countries. Since the Human Tissue Act 2006, the practice has been increasingly prevalent in the United Kingdom. However, evidence exists of uncertainty from healthcare professionals as to whether this is appropriate or manageable.

Objectives: The Barriers and Outcomes in Unspecified Donation study is a mixed-methods study designed to determine the answers to three research questions: Is there variation in transplant professionals' practice and attitudes, which is preventing some unspecified donations? Are psychosocial and physical outcomes after unspecified donation equivalent to those after specified donation? What is the economic benefit from unspecified donation?

Design: For RQ1, a qualitative study of healthcare professionals using focus groups and interviews was performed. Additionally, a quantitative, questionnaire-based study, including healthcare professionals from all United Kingdom transplant centres, was carried out. For RQ2, a qualitative study of unspecified kidney donors, including those who did not donate, was performed. A prospective, questionnaire study of both specified kidney donors and unspecified kidney donors across the United Kingdom was completed, and linked to data recorded by National Health Service Blood and Transplant. For RQ3, data on utilisation and quality of life were collected pre- and postoperatively using health economic and quality-of-life questionnaires to allow calculation of costs and comparisons between unspecified kidney donors and specified kidney donors.

Results: Fifty-nine interviews were conducted with healthcare professionals at six United Kingdom centres. There was broad support for unspecified donation, but key themes included the need for further training and information, consistency in approach across the United Kingdom, and uncertainty about age limits and psychological assessments. Managing donor expectations was a major concern. One hundred and fifty-three healthcare professionals, from all 23 United Kingdom transplant units, were recruited into the questionnaire study. The themes above were confirmed, and the need for more resource, particularly training and staffing, were emphasised.

Rq2: Eight hundred and thirty-seven participants including (59.3%) specified kidney donors and (40.7%) unspecified kidney donors were recruited to the prospective questionnaire study, of whom 373 went on to donate. We found no difference in psychosocial or physical outcomes, withdrawal rates [hazard ratio: unspecified kidney donors vs. specified kidney donors 1.12 (95% confidence interval 0.75 to 1.67)] or regret, although unspecified kidney donors experienced fewer positive perceptions [specified kidney donors 319 (86.2%) vs. unspecified kidney donors 247 (79.9%); p = 0.034]. In the qualitative study of 35 unspecified kidney donors (15 donated, 20 withdrawn), we found evidence of psychological distress in those not proceeding to donation, with a need for consistency and management of expectations. Data from the RQ2 prospective study showed a wide variation in withdrawal rates of donors across the United Kingdom, with withdrawal less likely in high volume, well-staffed centres. Fifty-eight per cent of unspecified kidney donors came from just five centres.

Rq3: We found no difference in costs between the two groups (£937 vs. £778; ns). We calculated that a 10% increase in unspecified kidney donors nationally would save at least £5 million.

Conclusions: This study suggests that unspecified donation is a safe and acceptable practice. Training and information should be disseminated across United Kingdom centres, with increased resource for unspecified donation where necessary. Consistency in approach and support for donors who do not proceed is important.

Funding: This synopsis presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number 13/54/54.