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.

Necesidades asistenciales en el estudio de personas candidatas a donantes de riñón

“…puede haber una voluntariedad menor de lo que parece inicialmente 49 . Se ha descrito también que, por razones étnico-culturales, los pacientes con ERC de procedencia asiática o africana tienen menores oportunidades de un TRDV 50 . En el presente análisis encontramos que la predisposición a ser estudiados se dio en un 31,67% de personas con nacionalidad no española y finalmente solo fue posible en un 3,33% de los casos.…”

Voucher-Based Kidney Donation and Redemption for Future Transplant

“…Many barriers exist, including cost, fear of complications, and time away from work; cultural, religious, and familial etiologic factors that preclude living donation also play a major role and cannot be overlooked. 18,19 Family vouchers remove an important disincentive to living donation, namely the reluctance to donate lest one's family member should need a transplant in the future. Family vouchers differ fundamentally from advanced donation because the voucher holder is not yet in need of a transplant and may never be.…”

Development of an intervention to improve access to living-donor kidney transplantation (the ASK study)

“…Whilst resources could be translated we do not feel that this will be sufficient adaptation for individuals who do not speak English. This intervention has been developed to particularly address variables that mediate socioeconomic inequity and may not address barriers that explain ethnic inequity in access to living-donor transplantation [ 48 ], which differ from those being targeted here [ 49 ]. If the intervention proves acceptable, feasible and effective it will require formal adaptation for non-English speaking groups.…”