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      Investigating Ethnic Disparity in Living-Donor Kidney Transplantation in the UK: Patient-Identified Reasons for Non-Donation among Family Members

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          Abstract

          There is ethnic inequity in access to living-donor kidney transplants in the UK. This study asked kidney patients from Black, Asian and minority ethnic groups why members of their family were not able to be living kidney donors. Responses were compared with responses from White individuals. This questionnaire-based mixed-methods study included adults transplanted between 1/4/13–31/3/17 at 14 UK hospitals. Participants were asked to indicate why relatives could not donate, selecting all options applicable from: Age; Health; Weight; Location; Financial/Cost; Job; Blood group; No-one to care for them after donation. A box entitled ‘Other—please give details’ was provided for free-text entries. Multivariable logistic regression was used to analyse the association between the likelihood of selecting each reason for non-donation and the participant’s self-reported ethnicity. Qualitative responses were analysed using inductive thematic analysis. In total, 1240 questionnaires were returned (40% response). There was strong evidence that Black, Asian and minority ethnic group individuals were more likely than White people to indicate that family members lived too far away to donate (adjusted odds ratio (aOR) = 3.25, 95% Confidence Interval (CI) 2.30–4.58), were prevented from donating by financial concerns (aOR = 2.95, 95% CI 2.02–4.29), were unable to take time off work (aOR = 1.88, 95% CI 1.18–3.02), were “not the right blood group” (aOR = 1.65, 95% CI 1.35–2.01), or had no-one to care for them post-donation (aOR = 3.73, 95% CI 2.60–5.35). Four qualitative themes were identified from responses from Black, Asian and minority ethnic group participants: ‘Burden of disease within the family’; ‘Differing religious interpretations’; ‘Geographical concerns’; and ‘A culture of silence’. Patients perceive barriers to living kidney donation in the UK Black, Asian and minority ethnic population. If confirmed, these could be targeted by interventions to redress the observed ethnic inequity.

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            Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support.

            Research electronic data capture (REDCap) is a novel workflow methodology and software solution designed for rapid development and deployment of electronic data capture tools to support clinical and translational research. We present: (1) a brief description of the REDCap metadata-driven software toolset; (2) detail concerning the capture and use of study-related metadata from scientific research teams; (3) measures of impact for REDCap; (4) details concerning a consortium network of domestic and international institutions collaborating on the project; and (5) strengths and limitations of the REDCap system. REDCap is currently supporting 286 translational research projects in a growing collaborative network including 27 active partner institutions.
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              Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups.

              Qualitative research explores complex phenomena encountered by clinicians, health care providers, policy makers and consumers. Although partial checklists are available, no consolidated reporting framework exists for any type of qualitative design. To develop a checklist for explicit and comprehensive reporting of qualitative studies (in depth interviews and focus groups). We performed a comprehensive search in Cochrane and Campbell Protocols, Medline, CINAHL, systematic reviews of qualitative studies, author or reviewer guidelines of major medical journals and reference lists of relevant publications for existing checklists used to assess qualitative studies. Seventy-six items from 22 checklists were compiled into a comprehensive list. All items were grouped into three domains: (i) research team and reflexivity, (ii) study design and (iii) data analysis and reporting. Duplicate items and those that were ambiguous, too broadly defined and impractical to assess were removed. Items most frequently included in the checklists related to sampling method, setting for data collection, method of data collection, respondent validation of findings, method of recording data, description of the derivation of themes and inclusion of supporting quotations. We grouped all items into three domains: (i) research team and reflexivity, (ii) study design and (iii) data analysis and reporting. The criteria included in COREQ, a 32-item checklist, can help researchers to report important aspects of the research team, study methods, context of the study, findings, analysis and interpretations.
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                Author and article information

                Journal
                J Clin Med
                J Clin Med
                jcm
                Journal of Clinical Medicine
                MDPI
                2077-0383
                21 November 2020
                November 2020
                : 9
                : 11
                : 3751
                Affiliations
                [1 ]Bristol Medical School: Population Health Sciences, University of Bristol, Bristol BS8 2PS, UK; a.owen-smith@ 123456bristol.ac.uk (A.O.-S.); fergus.caskey@ 123456bristol.ac.uk (F.C.); stephanie.macneill@ 123456bristol.ac.uk (S.M.); y.ben-shlomo@ 123456bristol.ac.uk (Y.B.-S.); pippa.bailey@ 123456bristol.ac.uk (P.B.)
                [2 ]Southmead Hospital, North Bristol NHS Trust, Bristol BS10 5NB, UK
                [3 ]The Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne NE7 7DN, UK; ctomson@ 123456doctors.org.uk
                [4 ]Imperial College Healthcare NHS Trust, London W12 0HS, UK; frank.dor@ 123456nhs.net
                [5 ]Bristol Health Partners’ Chronic Kidney Disease Health Integration Team, Bristol BS1 2NT, UK
                [6 ]Gift of Living Donation (GOLD), London NW10 0NS, UK
                Author notes
                Author information
                https://orcid.org/0000-0002-9175-9236
                https://orcid.org/0000-0003-2323-1082
                Article
                jcm-09-03751
                10.3390/jcm9113751
                7700269
                33233422
                1fa453a8-04fa-42c0-819b-ed95f23c1c09
                © 2020 by the authors.

                Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license ( http://creativecommons.org/licenses/by/4.0/).

                History
                : 30 September 2020
                : 17 November 2020
                Categories
                Article

                living kidney donation,living-donor kidney transplantation,ethnic disparity

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