Dorthe Slaats1, Annette Lennerling2, Mathilde C Pronk1, Karlijn A M I van der Pant3, Ine M Dooper4, Judith M Wierdsma5, Carla Schrauwers6, Hannah Maple7, Jacqueline van de Wetering1, Willem Weimar1, Willij C Zuidema1, Nizam Mamode7, Frank J M F Dor8, Emma K Massey9. 1. Department of Internal Medicine, Erasmus MC, Rotterdam, the Netherlands. 2. Department of Transplantation, Sahlgrenska University Hospital, Gothenburg, Sweden; The Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden. 3. Department of Internal Medicine/Nephrology, Renal Transplant Unit, Academic Medical Center, University of Amsterdam, Amsterdam, the Netherlands. 4. Department of Nephrology, Radboud UMC, Nijmegen, the Netherlands. 5. Department of Nephrology, UMC Utrecht, the Netherlands. 6. Department of Nephrology, VUmc Amsterdam, the Netherlands. 7. Department of Transplantation, Guys Hospital, London, United Kingdom. 8. Imperial College Renal and Transplant Centre, Hammersmith Hospital, Imperial College, London, United Kingdom. 9. Department of Internal Medicine, Erasmus MC, Rotterdam, the Netherlands. Electronic address: e.massey@erasmusmc.nl.
Abstract
BACKGROUND: Maintaining anonymity is a requirement in the Netherlands and Sweden for kidney donation from live donors in the context of nondirected (or unspecified) and paired exchange (or specified indirect) donation. Despite this policy, some donors and recipients express the desire to know one another. Little empirical evidence informs the debate on anonymity. This study explored the experiences, preferences, and attitudes of donors and recipients toward anonymity. STUDY DESIGN: Retrospective observational multicenter study using both qualitative and quantitative methods. SETTING & PARTICIPANTS: 414 participants from Dutch and Swedish transplantation centers who received or donated a kidney anonymously (nondirected or paired exchange) completed a questionnaire about anonymity. Participation was a median of 31 months after surgery. FACTORS: Country of residence, donor/recipient status, transplant type, time since surgery. OUTCOMES: Experiences, preferences, and attitudes toward anonymity. RESULTS: Most participants were satisfied with their experience of anonymity before and after surgery. A minority would have liked to have met the other party before (donors, 7%; recipients, 15%) or after (donors, 22%; recipients, 31%) surgery. Significantly more recipients than donors wanted to meet the other party. Most study participants were open to meeting the other party if the desire was mutual (donors, 58%; recipients, 60%). Donors agree significantly more with the principle of anonymity before and after surgery than recipients. Donors and recipients thought that if both parties agreed, it should be permissible to meet before or after surgery. There were few associations between country or time since surgery and experiences or attitudes. The pros and cons of anonymity reported by participants were clustered into relational and emotional, ethical, and practical and logistical domains. LIMITATIONS: The relatively low response rate of recipients may have reduced generalizability. Recall bias was possible given the time lag between transplantation and data collection. CONCLUSIONS: This exploratory study illustrated that although donors and recipients were usually satisfied with anonymity, the majority viewed a strict policy on anonymity as unnecessary. These results may inform policy and education on anonymity.
BACKGROUND: Maintaining anonymity is a requirement in the Netherlands and Sweden for kidney donation from live donors in the context of nondirected (or unspecified) and paired exchange (or specified indirect) donation. Despite this policy, some donors and recipients express the desire to know one another. Little empirical evidence informs the debate on anonymity. This study explored the experiences, preferences, and attitudes of donors and recipients toward anonymity. STUDY DESIGN: Retrospective observational multicenter study using both qualitative and quantitative methods. SETTING & PARTICIPANTS: 414 participants from Dutch and Swedish transplantation centers who received or donated a kidney anonymously (nondirected or paired exchange) completed a questionnaire about anonymity. Participation was a median of 31 months after surgery. FACTORS: Country of residence, donor/recipient status, transplant type, time since surgery. OUTCOMES: Experiences, preferences, and attitudes toward anonymity. RESULTS: Most participants were satisfied with their experience of anonymity before and after surgery. A minority would have liked to have met the other party before (donors, 7%; recipients, 15%) or after (donors, 22%; recipients, 31%) surgery. Significantly more recipients than donors wanted to meet the other party. Most study participants were open to meeting the other party if the desire was mutual (donors, 58%; recipients, 60%). Donors agree significantly more with the principle of anonymity before and after surgery than recipients. Donors and recipients thought that if both parties agreed, it should be permissible to meet before or after surgery. There were few associations between country or time since surgery and experiences or attitudes. The pros and cons of anonymity reported by participants were clustered into relational and emotional, ethical, and practical and logistical domains. LIMITATIONS: The relatively low response rate of recipients may have reduced generalizability. Recall bias was possible given the time lag between transplantation and data collection. CONCLUSIONS: This exploratory study illustrated that although donors and recipients were usually satisfied with anonymity, the majority viewed a strict policy on anonymity as unnecessary. These results may inform policy and education on anonymity.
Authors: Pippa K Bailey; Fergus J Caskey; Stephanie MacNeill; Charles Tomson; Frank J M F Dor; Yoav Ben-Shlomo Journal: J Clin Med Date: 2019-12-21 Impact factor: 4.241
Authors: Pippa K Bailey; Fergus J Caskey; Stephanie MacNeill; Charles R V Tomson; Frank J M F Dor; Yoav Ben-Shlomo Journal: Transplant Direct Date: 2020-03-13