**3. Results**

## *3.1. Quantitative Findings*

A total of 1240 questionnaires were returned from 3103 patients (40% response). The characteristics of all respondents are described in Table 1. LDKT recipients were more likely to respond than DDKT recipients and women were more likely to respond than men (Table S1). Study participants appeared to be generally similar to the National population of DDKT and LDKT recipients though the study sample had fewer Black, Asian and minority ethnic group participants (largest difference 9% for DDKT) (Table S2). Overall, the proportion of missing data was small (<10% for all demographic variables) (Table S3).



a No participants aged <20 years. b UK's Office for National Statistics 2011 census categories.

White participants were older than Black, Asian and minority ethnic group participants, and a greater proportion of White participants were LDKT recipients compared to Black, Asian and minority ethnic group respondents. Black, Asian and minority ethnic group participants were more likely to report having a religion than White participants: of those with a religion, the majority of Black, Asian and minority ethnic group participants reported a religion other than Christianity, whereas the majority of White participants reported being Christian (Table S4). Black, Asian and minority ethnic group participants reported a larger number of potential donors compared to White respondents (median number of family members ≥ 18 years: 19 versus 16, Wilcoxon rank-sum test *p* = 0.02).

Most participants had not asked any of their relatives to donate (*n* = 848/1181, 71.8%). In total, 81.8% (*n* = 973/1189) reported that one or more relative had offered to donate, with 85.6% of these actually starting donor assessment (representing 14.4% attrition).

Participant responses to the question "Thinking about those people you think could not donate a kidney to you, what are the reasons for this?" differed by ethnicity (Table 2). Black, Asian and minority ethnic group individuals were more likely than White respondents to indicate that family members lived too far away to donate (*p* < 0.001), were prevented from donating by financial concerns (*p* < 0.001), were unable to take time off work (*p* < 0.001), were not the right blood group (*p* = 0.002), or had no-one to care for them after donation (*p* < 0.001). We found no evidence that the proportion of respondents who indicated that age (*p* = 0.96), donor health (*p* = 0.88), or donor weight (*p* = 0.36) were reasons for non-donation differed between White and Black, Asian and minority ethnic group respondents.


**Table 2.** Participant reported reasons relatives could not donate a kidney to them.

There was strong evidence that even after adjustment for potential confounders of sex and age, Black, Asian and minority ethnic group individuals were more likely than White respondents 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 after donation (aOR 3.73 (95% CI 2.60–5.35)) (Table 3). The associations did not differ substantially between the complete cases analysis and the analyses with missing variables imputed (Table S5). In total, 11 individuals who had not selected the "Health – not healthy enough to donate" response indicated in the free-text that potential donors had or might develop the same kidney disease as them. In a sensitivity analysis, when these individuals were recoded as selecting "Health" as a reason for non-donation, there was no change in the direction or the size of associations observed in Table 3.


**Table 3.** Multivariable logistic regression analysis comparing reasons potential donor unsuitability between White and Black, Asian and minority ethnic participants a.

> Complete case analysis.

There was a modest suggestion of interaction between sex and ethnicity (likelihood ratio test *p* = 0.03) in the reporting of "no-one to care for them after donation" as a reason for non-donation (Supplementary Interactions) so the increased risk seen for Black, Asian and minority ethnic group was only seen in men.

#### *3.2. Qualitative Findings*

In total, 56 Black, Asian and minority ethnicity individuals provided free-text reasons for potential donor unsuitability: respondent characteristics are presented in Table S6. Four overall themes were identified (Table 4): (i) Burden of disease within the family, (ii) Differing religious interpretations, (iii) Specific geographical concerns, and (iv) A Culture of Silence.

**Table 4.** UK Black, Asian and minority ethnic participant qualitative analysis themes and illustrative quotes.


3.2.1. Burden of Disease within the Family

A large number of Black, Asian and minority ethnic group respondents stated that potential donors were unable to donate due to presumed or perceived ill health. Respondents reported a heavy burden of both hereditary and non-hereditary kidney disease precluding donation:

*"Family history of PKD [polycystic kidney disease]—all siblings, all children and uncles a*ff*ected." (Female*|*50–59 years*|*Asian*|*LDKT)*

*"Too old and unhealthy. Heart problem, Diabetes, high blood pressure, inheritance."(Male*|*60–69 years*|*Asian*|*Sikh*|*DDKT)*

Participants also reported that health problems were identified during donor assessment that prevented donation:

*"There were genetic issues that were contra-indications such as a cause of cancer which was discovered during screening* ... *" (Male*|*20–29 years*|*Asian*|*Muslim*|*DDKT)*

3.2.2. Differing Religious Interpretations

> Several participants reported that a relative's religion or faith had prevented them from donating:

*"Their religion would not allow them to donate a kidney." (Female*|*40–49 years*|*Black*|*Christian*| *LDKT)*

However, most participants considered the beliefs as unorthodox, describing what they perceived as a distortion of a religious belief:

*"Superstition*/*religion (distorted beliefs). Myth." (Female*|*60–69 years*|*Black*|*LDKT)*

and a discordance between the participants' and their relatives' interpretations of their faith:

*"Their religion*/*faith forbids them to donate* ... *thought they were Christians like me."(Female*|*60–69 years*|*Black*|*LDKT)*

No participants who reported religion as a barrier to donation for their relatives reported that they shared their relatives' beliefs. All but one of the respondents who reported religion as a reason for non-donation self-identified as Christian and was Black/African/Caribbean/Black British.

#### 3.2.3. Geographical Concerns

Several participants reported relatives being unable to donate due to geographical separation. However, it was not the distance alone that was considered a barrier to donation for some:

*"While some are abroad they were willing to travel." (Male*|*60–69 years*|*Black*|*Christian*|*LDKT)*

Rather, participants reported difficulties with immigration rules:

*"Immigration rules can be problematic too." (Male*|*40–49 years*|*Black*|*Muslim*|*LDKT)*

prohibitive financial concerns:

> *"My blood relatives live outside the UK. The financial cost has been a major issue."(Male*|*50–59 years*|*Other ethnic group*|*DDKT)*

and concerns about the quality of post-donation healthcare in their potential donor's country of residence:

*"I come from Papua New Guinea and health services are poor. People are afraid of death during and after donating of their kidneys. After operations the care given is not very good and people end up dying. We lost two relatives from sepsis." (Female*|*50–59 years*| *Other ethnic group*|*Christian*|*LDKT)*

#### 3.2.4. A culture of Silence

Several participants described a "culture of silence" around their illness, reporting that their family were not aware they had kidney disease:

*"Are unaware of my current condition." (Male*|*20–29 years*|*Asian*|*Hindu*|*LDKT)*

This was reported as a result of some participants personally not disclosing this information to relatives:

*"* ... *my reluctance to show how ill I was, to soldier on, accept my fate and manage accordingly." (Male*|*50–59 years*|*Asian*|*Sikh*|*LDKT)*

As well as other family members controlling the disclosure of information to the wider family:

*"The majority of my extended family do not 'o*ffi*cially' know that I am unwell*/*having dialysis or had a transplant as my parents did not want them to know." (Male*|*30–39 years*|*Other ethnic group*|*Other religion*|*DDKT)*

A summary model of barriers identified is presented in Figure 1.

**Figure 1.** A summary model of barriers to living kidney donation as reported by UK Black, Asian and Minority Ethnic individuals.

#### 3.2.5. Responses from White Participants

Comparing these free-text responses against those from the 56 purposively sampled White participants (Table S7), only one theme proved common to both White and Black, Asian and minority ethnic group respondents—"Burden of disease within the family". Two further themes were identified amongs<sup>t</sup> White respondents that were not evident in the Black, Asian and minority ethnic group dataset: (i) Lack of close family relationships—through relationship breakdown or dysfunction and (ii) Protecting others. These themes and illustrative quotes are presented as Supplementary Material (Table S7).
