Abstract
Rationale & Objective
Most living kidney donors are members of the recipient’s social network. Our study aims to characterize patient and social network factors associated with recruiting a living kidney donor.
Study Design
A cross-sectional study.
Setting & Participants
A total of 106 patients receiving hemodialysis (mean age 60 ± 13 years, 45% female, 75% Black) identified 508 network members (106 who offered to donate and 38 who received a donation request).
Predictors
Demographic and network factors (eg instrumental support, strength of relationships between the patients and members).
Outcomes
Whether the member offered to donate and whether the member’s offer was accepted. Patients’ qualitative reasoning regarding decision-making for recruiting a living kidney donor.
Analytic Approach
We performed a mixed-methods egocentric network analysis using multilevel logistic regression models as well as qualitative analysis of open-ended survey questions.
Results
Members who provided instrumental support were more likely to offer to donate (odds ratio 3.54; 95% CI [1.80-7.00]; P < 0.001) and have their offer declined (odds ratio 0.12; 95% CI [0.02-0.74]; P = 0.02). Members with stronger relationships with the patient (9.4 [1] vs 8.4 [2.5], P = 0.02) were more likely to be evaluated at a transplant center. Concern and guilt for the member was the most common reason that patients declined offers (41%) or did not make a living donor request (28%), while members’ insistence on donating was a common reason for accepting an offer.
Limitations
Small sample of only patients receiving hemodialysis.
Conclusions
For many patients, the barrier to living kidney donation was not a lack of potential donors within their network but reticence to recruit a donor due to concern and guilt for the donor. Future living donor kidney transplantation interventions should engage patients and their networks to facilitate communication, address patient-specific concerns and emphasize donor retention.
Index Words: End-stage kidney disease, living donation, live donation, kidney transplantation, kidney transplant, social network, hemodialysis, African American, racial differences
Plain-Language Summary
Despite most living donors being members of a patient’s social network, how these networks impact donation is poorly understood. We examined how characteristics of patients and their networks relate to donor recruitment along with qualitative insights on patients’ decision-making. We found that although many network members offered to donate, patients declined due to concern and guilt on their behalf. A member’s insistence on donating was a common reason for accepting an offer. Members who had stronger relationships with patients were more likely to be evaluated for transplantation. Future interventions should engage patients and their networks to facilitate communication, address patient-specific concerns, and emphasize donor retention. Such interventions may be particularly effective at reducing disparities in living donor kidney transplantation.
A living donor kidney transplant (LDKT) is the optimal treatment for kidney failure;1,2 however, there are inherent psychosocial and ethical challenges in burdening another to accept the risks of donation.3, 4, 5, 6, 7, 8, 9, 10 As a result, patients’ reluctance to initiate LDKT discussions is one of the most common modifiable barriers to donor recruitment.5,10, 11, 12, 13 Most living donors are members of the patient’s social network (ie, family, friends, etc.), yet few studies have examined the role of patients’ social networks in the living donation decision-making process.12,14,15 Further, most research has focused on the network member (member) at the time of donor evaluation and not at the critical stage before when patients and members are deliberating over potential donation. This is because transplant centers do not routinely collect social network data.16, 17, 18 Social networks are an important social determinant of health and differences in sociodemographic factors among members of the social network may contribute to disparities in living donation.12,19
Social network analysis involves the examination of both network composition and characteristics such as the relationship to the patient, strength of relationships, type of support the members provide, and structure of the network (eg, mean strength of relationships and member interconnectivity).16,20, 21, 22, 23 Our previous research has shown that transplant candidates with larger networks made more living donor requests.24 We also found that transplant candidates tended to request for donations from members they had strong relationships with and from members who provided them with instrumental support. In a subsequent study of patients receiving hemodialysis, we found that those with larger networks and more weakly connected members received more donation offers as patients received offers from weakly connected members.23,25
In this previous work, we focused on the living donor offers and overall network structure (eg, network constraint, position as a core network member).25 This study builds on this pervious work and focuses on how the members’ characteristics and their relationships with patients are associated with whether a patient receives a donation offer, accepts this donation offer, and requests for a donation from a member. We also examined qualitative responses about patients’ decision-making for recruiting or not recruiting specific members as potential donors. Finally, we evaluated if characteristics of the member were associated with subsequent transplant evaluation. The goal of our study is to mitigate extant disparities in LDKT by identifying barriers to donor recruitment via a network approach.19
Methods
Setting and Participants
This is a cross-sectional analysis of baseline data of a social network intervention clinical trial. Participants were recruited as a census at 2 hemodialysis facilities located in Southeastern Pennsylvania and Central New Jersey between October 2018 and February 2020. Patients were eligible if they had kidney failure, spoke English, and were at least 18 years old. The Temple University institutional review board approved the study protocol; written informed consent was obtained from all participants. The clinical and research activities being reported here are consistent with the Principles of the Declaration of Istanbul outlined by the Declaration of Istanbul on Organ Trafficking and Transplant Tourism as well as the Declaration of Helsinki.26,27 For clarity, we will refer to patients with kidney failure or potential transplant recipients as participants and potential donors as members for the remainder of the study.
Measurement
Data were collected via an interviewer-administered questionnaire developed from previously validated questionnaires and egocentric methods: the name generator, the name interpreter, and a who-to-whom matrix.28, 29, 30
The name generator included 6 questions and could generate up to 12 members: (1) members whom the participant seeks out for the participant’s important matters (seek discussion); (2) members who seek out the participant to discuss the participant’s important matters (unsolicited discussion); (3) members who seek out the participant to discuss the members’ problems, even if the participant’s problems are not discussed (member discussion); (4) members the participant discusses their health with (health discussion); (5) members who offered to donate; and (6) members who received a donation request. For members who offered to donate, participants were asked whether they accepted or declined that offer. Notably, members could be generated by more than one question (eg, a member could discuss important matters and receive a donation request from a participant).
The name interpreter identified members’ sex, cohabitation status, frequency of contact with the participant, types of social support (ie, emotional support, telling the participant they care, providing advice, instrumental support [eg, help with chores, childcare, and transportation], and financial support), and their role or relationship to the participant (eg, parents, siblings, etc.). An open-ended option was provided for roles not listed, and responses were individually inspected and re-categorized.25 Participants were not asked to report their members’ age or race to reduce survey burden because typically social networks have 95% racial concordance.31 The strength of the participant-member relationship was measured using a 10-point scale (ie, “with 10 being very close and one being not close at all”).
The who-to-whom matrix questions assessed relationships between each member pair. Participants were similarly asked to rate the strength of the relationship between each member on an 11-point scale (ie, “with 10 being especially close and zero being total strangers”). Network variables (eg, size, density, and constraint) were calculated using relationship strength data from the name interpreter and the who-to-whom matrix.25
The questionnaire also assessed participants’ self-reported kidney transplant waitlist status, dialysis vintage, and demographic variables such as age, sex, racial identity, annual income (categorical), education level, and marital status.
Qualitative Analysis
We asked participants open-ended questions about their reasons for accepting or declining an offer and reasons participants did or did not request a donation from a member. Participants were then asked to share the outcomes of accepted donation offers and requests (ie, “what happened?”). Responses were individually inspected and coded by 3 trained researchers into categories (ie, personal health, member’s health, concern or guilt for the member, personal disinterest, and member’s disinterest). Coding of responses was blinded by participant demographics and reviewed by the research team. Inconsistent categorization was discussed until a consensus was reached.
Network Statistics
A core network member (core member) was defined as a member that was generated by one of the following questions: seek discussion, unsolicited discussion, member discussion, and/or health discussion. A detailed glossary of network statistic terms (eg network size, mean network strength, and degree centrality) are available in Table S1.
Descriptive Statistics
The χ2 and Fisher exact tests were used for categorical dependent variables, and a t-test or analysis of variance was used for continuous dependent variables.
Modeling Outcomes
Our primary outcomes were as follows: (1) whether a member offered to donate (yes/no), (2) whether a members’ offer was accepted (yes/no), and (3) whether a member received a donation request (yes/no).
We first examined the bivariate associations among our 3 primary outcomes and a priori demographic and network variables.14,32,33 We then constructed 3 parsimonious multilevel logistic regression models to simultaneously test the associations of both participant and member variables with each of our primary outcomes. Model building was completed in 3 steps: (1) participant measures, (2) member measures, and (3) network measures. Confounders were identified a priori (complete description in Tables S2 and S3).25 Of note, we omit our model testing of the outcome of whether a member received a donation request as we calculated an intraclass correlation of 0.96, therefore significant variance was explained by participant-level attributes likely due to insufficient sample size.
Missing Data
Participants’ surveys were excluded if sections of the questionnaire were less than 90% complete. Four participants’ network densities could not be calculated because the participant had only one member. The proportion of missing data was low (<2% member’s sex and strength of relationship). Twenty-six participants (25%) chose not to report their income level, and one participant (1%) did not report their education level. Income was categorized into ≥ $40,000 or < $40,000 based on the federal poverty line for a 2-family household in the United States.34 The participants who chose not to report their income level were assigned an income of ≥ $40,000 for analysis.
Sensitivity Analysis
We retested our final models with the reassignment of income for participants who did not report their income level from ≥ $40,000 in our original models to < $40,000. In addition, the participants did not report their members’ age; however, some members may be ineligible to donate due to age. Thus, we created member and participant eligibility variables and retested our final models with both variables included. Details for the construction of both variables are in Tables S4 and S5; model results in Table S6.
Statistical Software
The SPSS version 25 was used for data management.35 R version 4.1.3 was used for data analysis.36 Igraph was used for social network visualization.37
Results
Recruitment for this cohort has been previously described.25 In brief, the response rate was 57% (n = 71) at the Southeastern Pennsylvania facility and 53% (n = 43) at the Central New Jersey facility. The final sample consisted of 106 participants (mean age 60 ± 13 years, 45% female, and 75% self-identified as Black; Table 1).
Table 1.
Participant Demographic Table
| Demographics | Total (N = 106) | Living Donor Offers |
Living Donor Requests |
||||||
|---|---|---|---|---|---|---|---|---|---|
| Received an Offer (n = 55) |
Did Not Receive an Offer (n = 51) | P | Requested for Donation (n = 17) | Did Not Request for Donation (n = 89) | P | ||||
| Accepted All Offers (n = 21) | Declined all Offers (n = 26) | Accepted and Declined Offers (n = 8) | |||||||
| Requested living donation | 17 (16) | 4 (19) | 2 (8) | 3 (38) | 8 (16) | 0.24 | |||
| Did not request donation | 89 (84) | 17 (81) | 24 (92) | 5 (63) | 43 (84) | ||||
| Age (y), mean ± SD | 60 ± 13 | 58 ± 12 | 59 ± 10 | 47 ± 14 | 64 ± 13 | 0.004 | 53 ± 14 | 61 ± 12 | 0.02 |
| Self-identified race | 0.76 | 0.10 | |||||||
| Black | 80 (76) | 14 (67) | 20 (77) | 6 (75) | 40 (78) | 16 (94) | 64 (72) | ||
| Non-Black | 26 (25) | 7 (33) | 6 (23) | 2 (25) | 11 (22) | 1 (6) | 25 (28) | ||
| Sex | |||||||||
| Female | 48 (45) | 8 (38) | 11 (42) | 6 (75) | 23 (45) | 0.34 | 6 (35) | 42 (47) | 0.52 |
| Income | 0.59 | 0.30 | |||||||
| < $40,000 | 52 (49) | 11 (52) | 12 (46) | 4 (50) | 25 (49) | 11 (65) | 41 (46) | ||
| ≥$40,000 | 28 (26) | 8 (38) | 7 (27) | 1 (13) | 12 (24) | 4 (24) | 24 (27) | ||
| Not reported | 26 (25) | 2 (10) | 7 (27) | 3 (38) | 14 (28) | 2 (12) | 24 (27) | ||
| Marital status | |||||||||
| Married | 36 (34) | 9 (43) | 7 (27) | 3 (38) | 17 (33) | 0.71 | 7 (41) | 29 (33) | 0.68 |
| Education | 0.30 | 0.46 | |||||||
| High school or less | 50 (47) | 13 (62) | 11 (42) | 2 (25) | 24 (47) | 10 (59) | 40 (45) | ||
| Some college or higher | 55 (52) | 8 (38) | 15 (58) | 6 (75) | 26 (51) | 7 (41) | 48 (54) | ||
| Missing | 1 (1) | 0 (0) | 0 (0) | 0 (0) | 1 (2) | 0 (0) | 1 (1) | ||
| Clinical variables | |||||||||
| Dialysis vintage | 0.43 | 0.07 | |||||||
| <1 y | 14 (13) | 3 (14) | 3 (12) | 0 (0) | 8 (16) | 0 (0) | 14 (16) | ||
| 1-5 y | 52 (49) | 11 (52) | 10 (39) | 3 (38) | 28 (55) | 7 (41) | 45 (51) | ||
| >5 y | 40 (38) | 7 (33) | 13 (50) | 5 (63) | 15 (29) | 10 (59) | 30 (34) | ||
| Self-reported on the list | 41 (39) | 11 (52) | 9 (35) | 4 (50) | 17 (33) | 0.41 | 10 (59) | 31 (35) | 0.11 |
| Network parameters | |||||||||
| Proportion female, mean ± SD | 0.63 ± 0.25 | 0.62 ± 0.21 | 0.60 ± 0.23 | 0.62 ± 0.25 | 0.64 ± 0.28 | 0.91 | 0.69 ± 0.25 | 0.61 ± 0.25 | 0.27 |
| Proportion kin, mean ± SD | 0.78 ± 0.23 | 0.77 ± 0.28 | 0.83 ± 0.16 | 0.70 ± 0.17 | 0.78 ± 0.24 | 0.50 | 0.82 ± 0.22 | 0.78 ± 0.23 | 0.47 |
| Mean network strength, mean ± SD | 9.0 ± 1.1 | 8.9 ± 1.2 | 8.9 ± 1.0 | 9.0 ± 0.6 | 9.2 ± 1.2 | 0.66 | 9.5 ± 0.6 | 8.9 ± 1.1 | 0.01 |
| Network size, mean ± SD | 4.8 ± 1.9 | 4.5 ± 1.9 | 5.5 ± 1.4 | 6.8 ± 2.0 | 4.3 ± 2.0 | < 0.001 | 5.1 ± 2.0 | 4.7 ± 1.9 | 0.47 |
Note: Table 1 shows the demographic and clinical characteristics of participants based on if they received offer(s) or requested for donation(s). Of the 106 total participants, 55 participants received at least one offer and 51 participants did not receive any offers. Participants who received at least one offer were further divided based on if they accepted all their offers (n = 21), declined all their offers (n = 26), or accepted and declined their offers (n = 8). In addition, participants were divided based on if they requested at least one network member for a donation (n = 17) or did not request for a donation from any network members (n = 89). Overall, most participants self-identified as male (55%) and Black (76%). Participants’ mean age was 60 years (SD = 13 y). ANOVA and t-test were used to compare continuous measures and given as mean ± (SD). Chi-squared was used to compare categorical variables and given as n (%). (SD), standard deviation; (NR), no response.
Participants identified 508 members, with a mean network size of 5 members (range one to 10). Fifty-five participants received a range of 1 to six offers, and 106 members offered to donate. Forty-two of the members’ offers were accepted, and 64 were declined by participants. Seventeen participants made donation requests, resulting in 38 members who received a donation request. Fig 1 shows the distribution of offers and requests by participants and members.
Figure 1.
Distribution of donation offers and donation requests. The distribution of donation offers and requests for all 106 participants (depicted as black bars) and 508 network members (members; depicted with gray bars) is shown. Of the 106 total participants, 55 participants received a donation offer (29 of which accepted at least one donation offer and 26 of which declined all their donation offers). Of the 29 participants who accepted at least one donation offer, 5 participants ultimately had a member who was evaluated for transplant. Of the 508 total members, 106 members offered to donate, and 42 of those offers were accepted. Of the 42 accepted offers, 12 members ultimately were evaluated for transplant. Of the 106 total participants, 17 participants requested at least one member for a donation. Of these 17 participants who requested a member for a donation, 4 participants ultimately had a member also evaluated for transplant. Of the 508 total members, 38 members received a donation request and 11 of those members also underwent transplant evaluation.
Network Composition
As shown in Table 2, 62% of members were female and 78% were relatives. The mean strength of participant-member relationships was 8.97. About half the members (51.8%) provided instrumental support. Fig 2 shows a sample of 5 participant networks illustrating a range of network sizes, strength of relationships, and distributions of instrumental support.
Table 2.
Network Member and Relationship Characteristics
| Demographics | Total (N = 508) | Offered to Donate (n = 106) |
Did not Offer to Donate (n = 402) | P | Received Donation Request (n = 38) | Did Not Receive Donation Request (n = 470) | P | |
|---|---|---|---|---|---|---|---|---|
| Offer was Accepted (n = 42) | Offer was Declined (n = 64) | |||||||
| Received donation request | 38 (7) | 6 (14) | 3 (5) | 29 (7) | 0.17 | |||
| Did not receive donation request | 470 (93) | 36 (86) | 61 (96) | 373 (93) | ||||
| Sex | 0.15 | 0.81 | ||||||
| Female | 317 (62) | 24 (57) | 34 (53) | 259 (64) | 22 (58) | 295 (63) | ||
| Missing | 2 (0) | 0 (0) | 0 (0) | 2 (1) | 1 (3) | 1 (0) | ||
| Cohabitation status | 1.0 | 0.86 | ||||||
| Lives together | 95 (19) | 8 (19) | 12 (19) | 75 (19) | 8 (21) | 87 (19) | ||
| Seek discussion | 350 (69) | 16 (38) | 36 (56) | 298 (74) | <0.001 | 20 (53) | 330 (70) | 0.04 |
| Unsolicited discussion | 181 (36) | 12 (29) | 20 (31) | 149 (37) | 0.40 | 10 (26) | 171 (36) | 0.28 |
| Member discussion | 286 (56) | 15 (36) | 32 (50) | 239 (60) | 0.007 | 14 (37) | 272 (58) | 0.02 |
| Health discussion | 286 (56) | 17 (41) | 34 (53) | 235 (59) | 0.07 | 20 (53) | 266 (57) | 0.76 |
| Core member | 456 (90) | 20 (48) | 42 (66) | 394 (98) | <0.001 | 28 (74) | 428 (91) | 0.002 |
| Emotional support | 432 (85) | 31 (74) | 57 (89) | 344 (86) | 0.08 | 32 (84) | 400 (85) | 1.0 |
| Care | 413 (81) | 30 (71) | 53 (83) | 330 (82) | 0.23 | 33 (87) | 380 (81) | 0.49 |
| Advice | 401 (79) | 30 (71) | 50 (78) | 321 (80) | 0.44 | 27 (71) | 374 (80) | 0.30 |
| Instrumental support | 263 (52) | 17 (41) | 44 (69) | 202 (50) | 0.01 | 27 (71) | 236 (50) | 0.02 |
| Financial support | 255 (50) | 19 (45) | 31 (48) | 205 (51) | 0.74 | 26 (68) | 229 (49) | 0.03 |
| Contact frequency | < 0.001 | 0.70 | ||||||
| Yearly | 27 (5) | 11 (26) | 8 (13) | 8 (2) | 1 (3) | 26 (6) | ||
| Daily to monthly | 481 (95) | 31 (74) | 56 (88) | 394 (98) | 37 (97) | 444 (95) | ||
| Strength of relationship, mean ± SD | 9.0 ± 1.7 | 8.1 ± 2.6 | 8.8 ± 1.9 | 9.1 ± 1.5 | 0.002 | 9.5 ± 1.0 | 8.9 ± 1.8 | 0.002 |
| Role | 0.71 | 0.15 | ||||||
| Parents | 35 (7) | 1 (2) | 6 (9) | 28 (7) | 1 (3) | 34 (7) | ||
| Siblings | 90 (18) | 7 (17) | 12 (19) | 71 (18) | 3 (8) | 87 (19) | ||
| Spouse/partner | 46 (9) | 4 (10) | 3 (5) | 39 (10) | 7 (18) | 39 (8) | ||
| Children + grandchildrena | 143 (28) | 9 (21) | 21 (33) | 113 (28) | 13 (34) | 130 (28) | ||
| In-laws + other relatives | 80 (16) | 8 (19) | 11 (17) | 61 (15) | 5 (13) | 75 (16) | ||
| Otherb | 114 (22) | 13 (31) | 11 (17) | 90 (22) | 9 (24) | 105 (22) | ||
| Degree centrality | 0.00 (0.64) | −0.25 (0.97) | 0.00 (0.71) | 0.03 (0.58) | 0.03 | −0.015 (0.46) | 0.00 (0.65) | 0.85 |
Note: Table 2 shows network member (member) and relationship characteristics of members based on if they offered to donate and if they received a donation request. Of the 508 total members, 106 members offered and 402 members did not offer to donate. Members who offered to donate were further subdivided based on if the offer was accepted (n = 42) or declined (n = 64). Of the 508 total members, 38 members received a living donor request. Most members were identified as female (62%) and 2 members had missing sex data. ANOVA and t-test were used to compare continuous measures and given as mean ± SD. Chi-squared was used to compare categorical variables and given as n (%). (SD), standard deviation.
There are a total of 128 children and 15 grandchildren. Eighteen children and 5 grandchildren had a donation offer accepted or received a living donor request.
The other category includes friends, neighbors, and church folk.
Figure 2.
A sample of 5 networks and network members who provide instrumental support, offer to donate, and/or make a living donor request. A sample of 5 participant networks is shown. The participant is represented by the yellow circle. The color of the nodes represents whether the network member (member) offered and the outcome of the offer where blue nodes represent members that did not offer, red nodes represent members that offered to donate and were declined, and green nodes represent members that offered to donate and were accepted. Members who received a living donor request are indicated by the thick black outline. Triangles represent members that provide instrumental support to the participant and circles represent members that do not. The thickness of the gray lines between nodes represents the strength of the relationship between 2 people with thicker lines representing stronger relationships. Despite being more likely to offer to donate if a member provides instrumental support (OR 3.54; 95% CI [1.80-7.00]; P < 0.001; illustrated by green and red triangles), their offer was simultaneously more likely to be declined (OR 0.12; 95% CI [0.02-0.74]; P = 0.02; illustrated by red triangles).
Odds of a Member Offering to Donate
Older participants had lower odds of a member offering to donate (odds ratio [OR] 0.97; 95% CI [0.94-1.00]; P = 0.03; final model in Table 3; complete model building in Table S2).
Table 3.
Final Models for the Odds of a Member Offering to Donate and Having the Offer Accepted
| Final Model: Odds of Offering to Donate |
Final Model: Odds of Having an Offer Accepted |
|
|---|---|---|
| Nparticipant = 106, nmember = 508 |
Nparticipant = 55, nmember = 106 |
|
| OR (95% CI), P | OR (95% CI), P | |
| Participant attributes | ||
| Age (y) | 0.97 (0.94-1.00), 0.03 | |
| Self-identified race: Black | 0.44 (0.18-1.08), 0.07 | |
| Education | ||
| Some college or higher | 0.23 (0.03-1.82), 0.16 | |
| Member/relationship attributes | ||
| Seek discussion | 0.32 (0.16-0.61), < 0.001 | |
| Member discussion | 0.47 (0.25-0.89), 0.02 | |
| Instrumental support | 3.54 (1.80-7.00), <0.001 | 0.12 (0.02-0.74), 0.02 |
| Contact frequency: yearly | 17.7 (4.85-64.3), < 0.001 | |
| Model parameters | ||
| Intercept | 0.38 (0.15-0.98), 0.05 | 3.79 (0.63-22.9), 0.15 |
| AUC | 0.90 (0.87-0.94) | 0.97 (0.93-1.00) |
| AIC, BIC, and LL | 435, 469, and −209 | 124, 135, and −58.1 |
Note: Among the participants’ demographic variables, older age (OR 0.97; 95% CI [0.94-1.00]; P = 0.03) and Black racial identity (OR 0.44; 95% CI [0.18-1.08]; P = 0.07) were associated with a lower likelihood of offering to donate. Network members (members) were less likely to offer to donate if they were sought out by the participant to discuss important matters (seek discussion; OR 0.32; 95% CI [0.16-0.61]; P < 0.001) and discuss their own problems with the participant, even if the participant does not discuss their problems (Member discussion; OR 0.47; 95% CI [0.25-0.89]; P = 0.02). Members were more likely to offer if they provide the participant with instrumental support (OR 3.54; 95% CI [1.80-7.00]; P < 0.001) and if they have less frequent contact with the participant (OR 17.7; 95% CI [4.85-64.3]; P < 0.001). However, despite being more likely to receive an offer from a member that provides them with instrumental support, participants were less likely to accept that offer (OR 0.12; 95% CI [0.02-0.74]; P = 0.02). Complete model building is available in Table S2A and B.
Abbreviations: AUC, area under curve; AIC, Akaike information criterion; BIC, Bayesian information criterion; LL, log likelihood; OR, odds ratio.
Members were less likely to offer to donate if they were sought out by the participant to discuss important matters (OR 0.32; 95% CI [0.16-0.61]; P < 0.001) or discussed their own problems with the participant (OR 0.47; 95% CI [0.25-0.89]; P = 0.02). Members were more likely to offer to donate if they provided the participant with instrumental support (OR 3.54; 95% CI [1.80-7.00]; P < 0.001; Fig 2; Table 3) and had less frequent contact with the participant (OR 17.7; 95% CI [4.85-64.3]; P < 0.001).
Odds of the Member’s Offer Being Accepted
Although members who provided instrumental support were more likely to offer to donate, their offers were more likely to be declined by participants (OR 0.12; 95% CI [0.02-0.74]; P = 0.02; final model in Table 3; full model in Table S3; represented by red triangles in Fig 2). No other participant-level or member-level variables were significantly associated with the odds of having an offer accepted.
Members Who Received Living Donor Requests
Participants requested donations from members with whom they had stronger relationships (9.53 ± 1.03 vs 8.93 ± 1.75, P = 0.002), from whom they received instrumental support and financial support (71% vs 29%, P = 0.02 and 68% vs 32%, P = 0.03, respectively), and from whom they sought discussion (53% vs 47%, P = 0.04). Participants did not request donations from members who initiated discussions about the member’s problems (member discussion; 37% vs 63%, P = 0.02).
Qualitative Responses
Most participants responded to the open-ended questions asking why they accepted or declined a donation offer (84% participant response rate, 83% of responses among participants with offers) and why they did or did not request a donation (96% participant response rate with responses for 87% of members).
The most common reasons participants declined member offers or did not request a donation from a member were concern (41%; eg “if something bad were to happen to them”) or guilt (28%; eg “I would feel guilty if something happened to them”) for the member and member ineligibility, such as poor health or histological incompatibility (19% and 32%, respectively; Fig 3 and Table 4). Participant disinterest was also a common reason for not requesting for a donation (14%). Participants accepted members’ offers because of insistence from the member (eg, “I didn’t want to at first, but the member wanted to because she loved me and didn’t want me to suffer”; Table 4).
Figure 3.
Reasons participants declined donation offers and did not request a donation. The most common reasons participants declined a donation offer from a network member (member) were concern/guilt for the member (n = 36), and member ineligibility (health and incompatible; n = 17). The most common reasons participants did not request a donation were member ineligibility (health and incompatible; n = 142), concern/guilt for the member (n = 125), and participant disinterest (n = 61).
Table 4.
Themes and Representative Participant Responses
| Theme | Representative Participant Responses |
|---|---|
| Accepted the offer or requested for a donation | I didn't want to at first, but the member wanted to because she loved me and didn't want me to suffer First person to offer She sincerely offered and she said whenever you’re ready let me know, she’s enthusiastic about it He came forward |
| Concern/guilt for member | My youngest or only child and couldn’t forgive myself if something happens Don’t want the member to go through with the surgery Guilty if something were to happen to the member Concern the member may need the kidney later Kidney disease runs in the family The member has a family/has a life |
| Member ineligible (health and incompatible) | Sick, unhealthy, overweight, drinks Incompatible, not a match AIDs, pregnancy, diabetes, liver transplant, dialysis |
| Participant disinterest | Don’t want one Didn’t want to anymore Just didn’t Not interested Don’t need a kidney They didn’t volunteer so I didn’t ask them |
| Member disinterest | Wasn’t serious and we haven’t talked since Never kept her appointment to get evaluated Just keeps offering but hasn’t gotten tested Was evaluated and decided he may need his kidney in the future Requested with no response Member changed mind |
| Complicated relationship | People are funny about that. It’s hard for me to ask My wife feels strongly that he doesn’t |
| Geography | Doesn’t live here Lives in a different state |
| Lack of knowledge | Would like to know more about transplant first A lot the participant doesn’t know |
| Religious | Jehovah’s witness |
Note: Common themes and representative participant responses are shown for why participants chose to accept or decline a members’ offer, or request a member for donation. The most common reasons participants did or did not accept a donation offer from a network member (member) were concern/guilt for the member (n = 36), member ineligibility (health and incompatible; n = 17) and accepting the offer (n = 14). The most common reasons participants did or did not request a donation were member ineligibility (health and incompatible; n = 142), concern/guilt for the member (n = 125), and participant disinterest (n = 61).
Recruited Donors and Transplant Evaluation
Thirty-nine participants responded to the question asking whether members had been evaluated for transplant. No significant differences were observed between participants who reported having a member evaluated and those who did not (Table S7).
Table 5 details the relationship characteristics of members evaluated for transplantation. Members with whom the participant had stronger relationships with and discussed health with were significantly more likely to have been evaluated (9.4 ± 1.0 vs 8.4 ± 2.5; P = 0.01 and 73% vs 33%; P = 0.004, respectively). Men were evaluated more often than women (59% vs 36%; P = 0.05).
Table 5.
Network Member and Relationship Characteristics by Transplant Evaluation Status
| Demographics | Evaluated for Transplant (n = 22) | Not Evaluated (n = 52) | P | Total (n = 74) |
|---|---|---|---|---|
| Donor recruitment | 0.56 | |||
| Offer was accepted | 11 (50) | 25 (48) | 36 (49) | |
| Offer was declined but received donation request | 0 (0) | 3 (6) | 3 (4) | |
| Received donation request | 10 (46) | 19 (37) | 29 (39) | |
| Offer was accepted and received donation request | 1 (5) | 5 (10) | 6 (8) | |
| Sex | ||||
| Femalea | 8 (36) | 33 (64) | 0.05 | 41 (55) |
| Cohabitation status | ||||
| Lives together | 7 (32) | 7 (14) | 0.13 | 14 (19) |
| Seek discussion | 12 (55) | 20 (39) | 0.31 | 32 (43) |
| Unsolicited discussion | 6 (27) | 12 (23) | 0.93 | 18 (24) |
| Member discussion | 6 (27) | 19 (37) | 0.62 | 25 (34) |
| Health discussion | 16 (73) | 17 (33) | 0.004 | 33 (45) |
| Core member | 17 (77) | 27 (52) | 0.08 | 44 (60) |
| Emotional support | 15 (68) | 42 (81) | 0.38 | 57 (77) |
| Care | 19 (86) | 39 (75) | 0.44 | 58 (78) |
| Advice | 13 (59) | 39 (75) | 0.28 | 52 (70) |
| Instrumental support | 9 (41) | 29 (56) | 0.36 | 38 (51) |
| Financial support | 8 (36) | 31 (60) | 0.11 | 39 (53) |
| Contact frequency | 0.46 | |||
| Yearly | 2 (9) | 10 (19) | 12 (16) | |
| Daily to monthly | 20 (91) | 42 (81) | 62 (84) | |
| Strength of relationship, mean ± SD | 9.4 ± 1.0 | 8.4 ± 2.5 | 0.01 | 8.7 ± 2.2 |
| Role | 0.06 | |||
| Parents | 1 (5) | 1 (2) | 2 (3) | |
| Siblings | 1 (5) | 9 (17) | 10 (14) | |
| Spouse/partner | 4 (18) | 6 (12) | 10 (14) | |
| Children + grandchildrenb | 11 (50) | 10 (19) | 21 (28) | |
| In-laws + other relatives | 2 (9) | 10 (19) | 12 (16) | |
| Otherc | 3 (14) | 16 (31) | 19 (26) | |
| Degree centrality | 0.02 (0.47) | −0.23 (0.87) | 0.11 | −0.12 (0.78) |
Note: A total of 22 network members (members) were evaluated for transplantation. Of these members, 50% had offered to donate, 45% received donation requests, and 5% both offered to donate and received a donation request. Members with whom the participant has stronger relationships with and discusses health with were evaluated at higher rates (P = 0.01 and P = 0.004, respectively). Children and grandchildren were the most common group to be evaluated for transplantation (P = 0.058) and men were evaluated for transplantation more than women (P = 0.048). Quantitative variables were compared using t-test and given as mean (SD). Categorical variables were compared using χ2 test and given as n (%).
Abbreviation: SD, standard deviation.
One member who was evaluated for transplant did not have their sex reported.
There are a total of 128 children and 15 grandchildren. Eighteen children and 5 grandchildren had a donation offer accepted or received a living donor request.
The other category includes friends, neighbors, and church folk.
The most common causes of donor attrition were member disinterest (n = 13), and not being a match (n = 12; Fig S1).
Sensitivity Analysis
Retesting our final models with the income for participants who chose not to report their income reassigned to < $40,000 did not affect model outcomes (Table S8). We identified 15 ineligible participants and 159 ineligible members (Tables S4 and S5). Factoring in member and participant eligibility did not affect model outcomes (Table S6).
Discussion
In this mixed-methods social network analysis of LDKT decision-making of patients receiving hemodialysis, we found that 69% of participants self-reported potentially eligible donors in their network. However, only 40% of the members’ offers were accepted and only 7% of eligible members received a donation request. Although participants were more likely to receive offers from members who provided instrumental support, they were also more likely to decline these offers. Based on our qualitative analyses, this is most often because of concern and guilt for the member who supports them, demonstrating that participants’ concerns for the donor, the relationship, and the support of the relationship limits LDKT access rather than a lack of willing donors.3, 4, 5, 6, 7, 8, 9, 10 These findings provide unique insights into how both quantitative and qualitative dimensions of patients’ relationships with their members may affect access to living donation. Further, these data are often not collected by transplant centers and national registries and thus identify important and underrecognized areas for interventions.16, 17, 18
In our study, participants received and accepted more donation offers than made donation requests. Requesting for a donation is more of an active behavior compared with accepting another’s offer to donate.38 To make a living donor request, the patient must first believe the benefits outweigh the risks of LDKT, and notably, the risks for the donor are often overestimated by patients.38 In addition, they must select a member with whom they feel comfortable enough to make a personal request for a living donation and have the skill to effectively communicate their need with sensitivity and empathy.8,38,39 Like our previous study of kidney transplant candidates, we found that participants requested donations from members with whom they had the strongest relationships with and who provided instrumental support.24 However, many participants also declined offers from strongly connected members who provide instrumental support and instead accepted offers from weakly connected members.25 Our qualitative results suggest this is because participants’ concern about complicating their relationship with the member and others in the network and losing the relationships and support of valuable members. In contrast, one of the major reasons participants accepted donation offers was the members’ insistence on donating to the participant (eg, they care for the participant and do not wish to see them suffer). For this reason, future LDKT interventions should engage the network to not only facilitate conversations between recipients and donors and address recipient feelings of guilt and concern for the donor but also engage donors to provide the opportunity for donors to share their motivations and reduce the onus on the recipient to identify and recruit a donor.
In addition, our previous study found weakly connected members were the most likely to have their offer accepted; however, these members were also the most likely to be lost before donor evaluation.25 Given our current findings that the most common outcome of accepted donation offers and requests before transplantation evaluation is donor disinterest (eg, loss to follow-up), interventions to facilitate donor engagement may promote recruitment of strongly connected members and retention throughout the transplantation process. It should be noted that causes of donor attrition, such as not a match and member ineligible for health reasons, may also reflect a common strategy to provide donors means of opting out of donorship.40 Therefore, engagement of potential donors should be carefully balanced with an emphasis on the voluntary nature of donation and safeguards in place for the donor.
Differences in people’s social networks have been proposed as an explanation for extant disparities in LDKT.16,18,23 Although we found no difference in the likelihood of accepting a member’s offer based on socioeconomic status (eg, income and educational attainment) and race, self-identifying Black participants received fewer donation offers than non-Black participants. To reduce survey burden, we did not collect the members’ race however previous studies have found that donors identified from recipient social networks typically have 95% racial concordance.31 We hypothesize that the observed disparities of self-identifying Black participants receiving fewer donation offers may reflect inequality at the level of health care systems, in which potential donors are likely also self-identifying Black individuals and experience similar disparities as patients. In addition, previous research has found that women are more likely to be living kidney donors; however, we found that male members completed donor evaluations at higher rates compared with female members despite there being no difference in rates of donor recruitment (accepted offers or requests) based on sex.24,41,42 Further research is needed to understand potential racial and sex disparities in LDKT and should evaluate disparities of both transplant candidates and their potential donors.43,44
Altogether, we encourage LDKT network interventions to engage the social network to assist in identifying potential donors and facilitating communication between recipients and donors, specifically addressing feelings of guilt, concern, and uncertain donor outcomes.4,45, 46, 47 Notably, a successful intervention by Rodrigue et al addresses many of the barriers identified in our study with home-based educational sessions involving both patients and their networks.43,47 This network intervention offered the opportunity to clarify misunderstandings and fears and bypass the need for patients to initiate donor discussion, creating the opportunity to recruit strongly connected and motivated donors who may be the most likely to complete transplant evaluation based on our study.47 Furthermore, involving living donor champions and using social media may be effective strategies to expand and engage patients’ social network.24,25,48, 49, 50 Such interventions may be particularly effective at overcoming racial disparities in LDKT by addressing disparities at both the participant and network level.47,48
These findings should be interpreted in the context of our study’s limitations. First, the generalizability of our sample was limited by data collection at 2 Mid-Atlantic urban and suburban facilities and focused only on in-center patients receiving hemodialysis. Therefore, we cannot generalize our findings to patients receiving peritoneal dialysis or those who have had successful living donor transplants. Furthermore, we had a response rate of just over 50%, and participants motivated to enroll in our study may not be representative of the national sample of patients with kidney failure. Our sample also consisted of predominantly self-identified Black participants (76%), which limited the generalizability to other racial groups. Second, this was an egocentric network analysis, which relies on participants’ recollections of their relationships with members and the relationships between members rather than direct reports by the members themselves. For this reason, the member relationships may be under or overestimated based on the participants’ perceptions. Furthermore, the members’ donor evaluations were participant-reported, and we did not validate these evaluations with the transplant centers. Finally, members were generated through 6 questions to map out the relevant social connections in terms of LDKT.9 We did not generate all potential members, and networks may not be truly representative of all members that existed in participant networks and influenced participant attitudes toward LDKT. There is still much to learn about the social dynamics and networks of patients with kidney failure. We recommend that further network analysis include larger samples of patients with kidney failure and with greater diversity to validate these results.
In conclusion, for many patients, the barrier to LDKT was not a lack of potential donors within their social network but reticence to recruit a donor due to concern and guilt on their behalf. Furthermore, many of the recruited donors who ultimately did not get evaluated at a transplant center had weak relationships with the patient. Future network interventions should engage both patients and potential donors to encourage potential donors to participate in donor recruitment and improve retention through the transplantation process. Such network interventions may be especially effective at reducing disparities in LDKT.
Article Information
Authors’ Full Names and Academic Degrees
Briana E. Lee, MD, Heather M. Gardiner, MPH, PhD, Crystal A. Gadegbeku, MD, Peter P. Reese, MD, MSCE, Zoran Obradovic, PhD, Edward L. Fink, PhD, and Avrum Gillespie, MD
Authors’ Contributions
Research idea and study design: BEL, HMG, CAG, PPR, ZO, ELF, and AG; data acquisition: BEL, ZO, ELF, and AG; data analysis/interpretation: BEL, ZO, ELF, and AG; statistical analysis: BEL and AG; supervision or mentorship: HMG, CAG, PPR, ZO, ELF, and AG. Each author contributed important intellectual content during article drafting or revision and agrees to be personally accountable for the individual’s own contributions and to ensure that questions pertaining to the accuracy or integrity of any portion of the work, even one in which the author was not directly involved, are appropriately investigated and resolved, including with documentation in the literature if appropriate.
Support
This research was funded by the National Institute of Diabetes and Digestive and Kidney Diseases of the National Institutes of Health under the award K23 DK111943 (AG). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Financial Disclosures
The authors declare that they have no relevant financial interest. Funders or affiliated institutions with study authors did not have any role in study design; data collection, analysis, and interpretation of data; writing the report; and the decision to submit the report for publication.
Peer Review
Received July 22, 2024. Evaluated by 2 external peer reviewers, with direct editorial input from the Statistical Editor, an Associate Editor, and the Editor-in-Chief. Accepted in revised form June 16, 2025.
Footnotes
Complete author and article information provided before references.
Figure S1: Qualitative outcomes of accepted donation offers and requests.
Table S1: Glossary of Network Statistic Variables.
Table S2: Complete Model Building for the Odds of Offering to Donate.
Table S3: Complete Model Building for the Odds of Having an Offer Accepted.
Table S4: Sensitivity Analysis: Participant Eligibility.
Table S5: Sensitivity Analysis: Network Member Eligibility.
Table S6: Sensitivity Analysis: Final Models With Participant and Network Member Eligibility.
Table S7: Participant Demographic Table by Transplantation Evaluation Status.
Table S8: Sensitivity Analysis: Income Reassignment to < $40,000 for Non-respondents.
Supplementary Materials
Figure S1; Tables S1-S8.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Figure S1; Tables S1-S8.