Dataset Information

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

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.

SUBMITTER: Wong K

PROVIDER: S-EPMC7700269 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature

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

Wong Katie K Owen-Smith Amanda A Caskey Fergus F MacNeill Stephanie S Tomson Charles R V CRV Dor Frank J M F FJMF Ben-Shlomo Yoav Y Bouacida Soumeya S Idowu Dela D Bailey Pippa P

Journal of clinical medicine 20201121 11

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 a ...[more]

PMID: 33233422

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Project description:BackgroundThe UK has implemented a national strategy for organ donation that includes a centrally coordinated network of specialist nurses in organ donation embedded in all intensive care units and a national organ retrieval service for deceased organ donors. We aimed to determine whether despite the national approach to donation there is significant regional variation in deceased donor kidney donation rates.MethodsThe UK prospective audit of deaths in critical care was analysed for a cohort of patients who died in critical care between April 2010 and December 2011. Multivariate logistic regression was used to identify the factors associated with kidney donation. The logistic regression model was then used to produce risk-adjusted funnel plots describing the regional variation in donation rates.ResultsOf the 27 482 patients who died in a critical care setting, 1528 (5.5%) became kidney donors. Factors found to influence donation rates significantly were: type of critical care [e.g. neurointensive vs general intensive care: OR 1.53, 95% confidence interval (CI) 1.34-1.75, P<0.0001], patient ethnicity (e.g. 'Asian' vs 'white': OR 0.17, 95% CI 0.11-0.26, P<0.0001), age (e.g. age >69 vs age 18-39 yr: OR 0.2, 0.15-0.25, P<0.0001), and cause of death [e.g. 'other' (excluding 'stroke' and 'trauma') vs 'trauma': OR 0.04, 95% CI 0.03-0.05, P<0.0001]. Despite correction for these variables, kidney donation rates for the 20 UK kidney donor regions showed marked variation. The overall standardized donation rate ranged from 3.2 to 7.5%. Four regions had donation rates of >2 standard deviations (sd) from the mean (two below and two above). Regional variation was most marked for donation after circulatory death (DCD) kidney donors with 9 of the 20 regions demonstrating donation rates of >2 sd from the mean (5 below and 4 above).ConclusionsThe marked regional variation in kidney donation rates observed in this cohort after adjustment for factors strongly associated with donation rates suggests that there is considerable scope for further increasing kidney donation rates in the UK, particularly DCD.

Project description:BackgroundLiving donor kidney transplantation (LDKT) has several advantages over deceased donor kidney transplantation. Yet rates of living donation are declining in Canada and there exists significant interprovincial variability. Efforts to improve living donation tend to focus on the patient and barriers identified at their level, such as not knowing how to ask for a kidney or lack of education. These efforts favor those who have the means and the support to find living donors. Thus, a Canadian Institutes of Health Research (CIHR)-organized workshop recommended that education efforts to understand and remove barriers should focus on health professionals (HPs). Despite this, little attention has been paid to what they identify as barriers to discussing LDKT with their patients.ObjectiveOur aim was to explore HP-identified barriers to discuss living donation with patients in 3 provinces of Canada with low (Quebec), moderate (Ontario), and high (British Columbia) rates of LDKT.DesignThis study consists of an interpretive descriptive approach as it enables to move beyond description and inform clinical practice.SettingPurposive criterion and quota sampling were used to recruit HPs from Quebec, Ontario, and British Columbia who are involved in the care of patients with kidney disease and/or with transplant coordination.PatientsNot applicable.MeasurementsSemistructured interviews were conducted. The interview guide was developed based on a preliminary analytical framework and a review of the literature.MethodsThematic analysis was used to analyze the data stemming from the interviews. The coding process comprised of a deductive and inductive approach, and the use of a qualitative analysis software (NVivo 11). Following this, themes were identified and developed. Interviews were conducted until thematic saturation was obtained. In total, we conducted 16 telephone interviews as thematic saturation was attained.ResultsSix predominant themes emerged: (1) lack of communication between transplant and dialysis teams, (2) absence of referral guidelines, (3) role perception and lack of multidisciplinary involvement, (4) HP's lack of information and training, (5) negative attitudes of some HP toward LDKT, (6) patient-level barriers as defined by the HP. HPs did mention patients' attitudes and some characteristics as the main barriers to discussions about living donation; this was noted in all provinces. HPs from Ontario and British Columbia indicated multiple strategies being implemented to address some of these barriers. Those from Ontario mentioned strategies that center on the core principles of provincial-level standardization, while those from British Columbia center on engaging the entire multidisciplinary team and improved role perception. We noted a dearth of such efforts in Quebec; however, efforts around education and promotion, while tentative, have emerged.LimitationsSocial desirability and selection bias. Our analysis might not be applicable to other provinces.ConclusionsHPs involved with the referral and coordination of transplantation play a major role in access to LDKT. We have identified challenges they face when discussing living donation with their patients that warrant further assessment and research to inform policy change.

Dataset Information

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

Publications

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

Similar Datasets

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