Barriers to and outcomes of unspecified kidney donation in the UK: BOUnD, a mixed-methods study
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 professi...
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2025-06-01
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| author | Nizam Mamode Sam Norton Paul McCrone Joe Chilcot Heather Draper Peter Gogalniceanu Mira Zuchowski Lisa Burnapp Jan Shorrock Kiran Gupta Hannah Maple |
| author_facet | Nizam Mamode Sam Norton Paul McCrone Joe Chilcot Heather Draper Peter Gogalniceanu Mira Zuchowski Lisa Burnapp Jan Shorrock Kiran Gupta Hannah Maple |
| author_sort | Nizam Mamode |
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| description | 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 RQ1 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.
Plain language summary In the United Kingdom, donating a kidney to a stranger (known as unspecified or altruistic donation), was clarified in the Human Tissue Act 2006. The numbers increased rapidly, leading to a major impact on kidney transplantation, both through donations to a single individual and through the national United Kingdom Living Kidney Sharing Scheme, where chains of transplants are initiated. Patients who would otherwise not easily obtain a transplant have benefited in particular. Despite this, some evidence of negative attitudes by healthcare professionals still exists, along with concerns about the justification of unspecified donation. The Barriers and Outcomes in Unspecified Donation study was a large, mixed-methods study that aimed to assess the barriers to and outcomes of unspecified donation. The study comprised three main arms, considering the following questions: What do healthcare professionals think about the practice? What are the physical and psychosocial outcomes after unspecified donation? What is the economic benefit (if any) of unspecified donation? The first question was answered through a questionnaire study of 153 healthcare professionals from every United Kingdom transplant centre and 59 semistructured interviews. We found that there was broad support for unspecified donation, but that uncertainty existed among healthcare professionals over age limits for younger donor candidates and the timing of psychological assessment. The need for consistency across the country, and further training, was emphasised. Indeed, we found wide variations in the proportion of donors who did not proceed to donate. To answer the second and third questions, we recruited 837 donors, both ‘conventional’ donors (aka specified donors, who know their recipient) and unspecified donors, to a prospective questionnaire study. Sequential questionnaires were completed by 373 donors over four time points (two before and two after donation) across a 12-month period. Thirty-five participants underwent semistructured interviews. We found that unspecified donors had equivalent physical and psychosocial outcomes to ‘conventional’ (specified) donors, and did not regret donation, but did experience some negative attitudes. Finally, we found that unspecified donation was no more expensive than ‘conventional’ donation, and that a small increase in donation rates would save significant sums for the National Health Service. Those not proceeding to donation expressed differing needs with respect to how this news was communicated and how people were subsequently followed up, especially those with new medical diagnoses. |
| format | Article |
| id | doaj-art-212fefbb094541b79514cbbc3d908c3e |
| institution | DOAJ |
| issn | 2755-0079 |
| language | English |
| publishDate | 2025-06-01 |
| publisher | NIHR Journals Library |
| record_format | Article |
| series | Health and Social Care Delivery Research |
| spelling | doaj-art-212fefbb094541b79514cbbc3d908c3e2025-08-20T02:39:25ZengNIHR Journals LibraryHealth and Social Care Delivery Research2755-00792025-06-01132010.3310/RTEW9328NIHR135888Barriers to and outcomes of unspecified kidney donation in the UK: BOUnD, a mixed-methods studyNizam Mamode0Sam Norton1Paul McCrone2Joe Chilcot3Heather Draper4Peter Gogalniceanu5Mira Zuchowski6Lisa Burnapp7Jan Shorrock8Kiran Gupta9Hannah Maple10Transplant Renal Urology, Guy’s and St Thomas’ NHS Foundation Trust, London, UKInstitute of Psychiatry, Psychology and Neuroscience, King’s College London, London, UKInstitute for Lifecourse Development, Faculty of Education, Health and Human Sciences, University of Greenwich, Greenwich, London, UKInstitute of Psychiatry, Psychology and Neuroscience, King’s College London, London, UKDepartment of Health Sciences, University of Warwick, Coventry, UKTransplant Renal Urology, Guy’s and St Thomas’ NHS Foundation Trust, London, UKInstitute of Psychiatry, Psychology and Neuroscience, King’s College London, London, UKNHS Blood and Transplant, Bristol, UKGive a Kidney, Brendarth, Lune Valley Estate, Lancaster, UKPatient representative, LondonTransplant Renal Urology, Guy’s and St Thomas’ NHS Foundation Trust, London, UKBackground 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 RQ1 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. Plain language summary In the United Kingdom, donating a kidney to a stranger (known as unspecified or altruistic donation), was clarified in the Human Tissue Act 2006. The numbers increased rapidly, leading to a major impact on kidney transplantation, both through donations to a single individual and through the national United Kingdom Living Kidney Sharing Scheme, where chains of transplants are initiated. Patients who would otherwise not easily obtain a transplant have benefited in particular. Despite this, some evidence of negative attitudes by healthcare professionals still exists, along with concerns about the justification of unspecified donation. The Barriers and Outcomes in Unspecified Donation study was a large, mixed-methods study that aimed to assess the barriers to and outcomes of unspecified donation. The study comprised three main arms, considering the following questions: What do healthcare professionals think about the practice? What are the physical and psychosocial outcomes after unspecified donation? What is the economic benefit (if any) of unspecified donation? The first question was answered through a questionnaire study of 153 healthcare professionals from every United Kingdom transplant centre and 59 semistructured interviews. We found that there was broad support for unspecified donation, but that uncertainty existed among healthcare professionals over age limits for younger donor candidates and the timing of psychological assessment. The need for consistency across the country, and further training, was emphasised. Indeed, we found wide variations in the proportion of donors who did not proceed to donate. To answer the second and third questions, we recruited 837 donors, both ‘conventional’ donors (aka specified donors, who know their recipient) and unspecified donors, to a prospective questionnaire study. Sequential questionnaires were completed by 373 donors over four time points (two before and two after donation) across a 12-month period. Thirty-five participants underwent semistructured interviews. We found that unspecified donors had equivalent physical and psychosocial outcomes to ‘conventional’ (specified) donors, and did not regret donation, but did experience some negative attitudes. Finally, we found that unspecified donation was no more expensive than ‘conventional’ donation, and that a small increase in donation rates would save significant sums for the National Health Service. Those not proceeding to donation expressed differing needs with respect to how this news was communicated and how people were subsequently followed up, especially those with new medical diagnoses.https://doi.org/10.3310/RTEW9328renalkidneyliving donationaltruisticunspecifiedhealth economics mixed methods study |
| spellingShingle | Nizam Mamode Sam Norton Paul McCrone Joe Chilcot Heather Draper Peter Gogalniceanu Mira Zuchowski Lisa Burnapp Jan Shorrock Kiran Gupta Hannah Maple Barriers to and outcomes of unspecified kidney donation in the UK: BOUnD, a mixed-methods study Health and Social Care Delivery Research renal kidney living donation altruistic unspecified health economics mixed methods study |
| title | Barriers to and outcomes of unspecified kidney donation in the UK: BOUnD, a mixed-methods study |
| title_full | Barriers to and outcomes of unspecified kidney donation in the UK: BOUnD, a mixed-methods study |
| title_fullStr | Barriers to and outcomes of unspecified kidney donation in the UK: BOUnD, a mixed-methods study |
| title_full_unstemmed | Barriers to and outcomes of unspecified kidney donation in the UK: BOUnD, a mixed-methods study |
| title_short | Barriers to and outcomes of unspecified kidney donation in the UK: BOUnD, a mixed-methods study |
| title_sort | barriers to and outcomes of unspecified kidney donation in the uk bound a mixed methods study |
| topic | renal kidney living donation altruistic unspecified health economics mixed methods study |
| url | https://doi.org/10.3310/RTEW9328 |
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