Abstract
Background:
The Living Donor Navigator (LDN) Program pairs kidney transplant candidates (TC) with a friend or family member for advocacy training to help identify donors and achieve living donor kidney transplantation (LDKT). However, some TCs participate alone as self-advocates.
Methods:
In this retrospective cohort study of TCs in the LDN program (04/2017-06/2019), we evaluated the likelihood of LDKT using Cox proportional hazards regression and rate of donor screenings using ordered events conditional models by advocate type.
Results:
Self-advocates (25/127) had lower likelihood of LDKT compared to patients with an advocate (adjusted hazard ratio (aHR): 0.22, 95% confidence interval (CI): 0.03-1.66, p=0.14). After LDN enrollment, rate of donor screenings increased 2.5-fold for self-advocates (aHR: 2.48, 95%CI: 1.26–4.90, p=0.009) and 3.4-fold for TCs with an advocate (aHR: 3.39, 95%CI: 2.20–5.24, p<0.0001).
Conclusions:
Advocacy training was beneficial for self-advocates, but having an independent advocate may increase the likelihood of LDKT.
Graphical Abstract
INTRODUCTION
There remains a tremendous gap in the supply and demand of kidney transplantation in the United States. Approximately 125,000 patients are newly diagnosed with end-stage renal disease (ESRD) each year, but fewer than 17,000 deceased donor kidney transplants (DDKT) are performed annually.1,2 The majority of patients wait on dialysis, where mortality rates within the first year are nearly 20% and 5-year survival rates are only 35%.1,3 Alternatively, living donor kidney transplantation (LDKT) has a significant survival benefit, not only in comparison to dialysis, but DDKT as well.4 Despite these benefits, rates of LDKT have never exceeded 7,000 operations in a year.2 Previous studies have suggested that potential live donors may not understand the need for kidney donation, while many transplant candidates (TC) are not willing to discuss LDKT with others.5,6 Importantly, the most prevalent barrier for TCs has been shown to be a lack of knowledge about how to ask someone to donate.7
Several programs have subsequently been developed to remove the burden of asking from the patient including the Johns Hopkins Live Donor Champion Program, the Mount Sinai Kidney Coach Program, and the University of Alabama at Birmingham (UAB) Living Donor Navigator (LDN) Program.8–10 These programs pair TCs with a friend, family or community member who is then trained to advocate on the patient’s behalf. LDN advocacy training consists of four classes over a 2-month period to provide education regarding kidney transplantation, live donation, communication strategies, and social networking techniques.9 The aforementioned programs have demonstrated increases in live donor screening and/or donor approval for participants in comparison to standard of care controls.8–10 However, not all TCs are able to identify an independent advocate and still wish to participate in the program alone.10 Within the LDN program, these self-advocates participate in the same advocacy training as individuals who learn to advocate for their loved one.
The concept of self-advocacy has been explored among adolescent, HIV/AIDS, disability, and cancer patient populations and prior work has demonstrated that the act of self-advocating is associated with successful chronic disease management and improved patient outcomes.11–13 Similarly, qualitative work among dialysis patients suggests that self-advocacy is an important factor for pursuing DDKT.14 However, the construct of self-advocacy assumes a different form when LDKT is the desired outcome. LDKT presents a unique psychosocial challenge given the necessary request for a living organ donation and a substantial sacrifice from an otherwise healthy individual that is often the patient’s friend or family member.15 Thus, the demands of self-advocacy underline the intent of the aforementioned programs to separate the “ask” for an organ donation from the “need” of the ESRD patient, though the role of self-advocacy in the pursuit of LDKT remains an important and practical consideration. To date, the self-advocate phenotype has not been described and the success of self-advocates has not been compared to that of patients with an independent advocate. We hypothesized that patients who served as self-advocates in the UAB LDN program had decreased likelihood of LDKT in comparison to participants that had someone advocating on their behalf. To this end, we reviewed TCs’ experiences in the UAB LDN program during its first 26 months of implementation to compare the likelihood of LDKT between advocacy types.
MATERIALS AND METHODS
A retrospective cohort study was conducted to compare TCs’ likelihood of LDKT and rates of living donor screening after enrollment in the UAB LDN program by advocacy type. This study was approved by the Institutional Review Board at the University of Alabama at Birmingham (protocol #300003041).
Study Population
The LDN program has been offered to all TCs evaluated since February 2017 – programmatic reach has been previously described.9 All TCs enrolled in the UAB LDN program from its initiation on April 8, 2017 through June 30, 2019 were identified using our center’s internal transplant database, transplant administration records, and our electronic medical record (n=142). These resources include data on all TCs who participated in the UAB LDN Program, their associated advocate(s) in the program, and all individuals screened as a potential living donor on each candidate’s behalf. TCs were excluded for incomplete or missing data regarding advocacy status or date of first LDN class (n=11) or if LDN classes did not occur in-person at UAB (n=4). TCs were categorized by advocate relationship. Patients who had a friend or family member who underwent advocacy training through the UAB LDN program were deemed to have an advocate, hereafter referred to as patients with an advocate. These patients were compared to self-advocates, i.e. TCs who underwent advocacy training alone and served as their own advocate.
Outcomes
The primary outcome for this study was LDKT, while our secondary outcome was number of screened donors. These data were captured on November 22, 2019. All LDKT performed at UAB that occurred after a candidate’s date of enrollment in the LDN program, which was defined as the date of a TC’s or an advocate’s first LDN class, were included. Donors screened via online or telephone assessment on or after the date of receipt of transplant referral and prior to a TC’s enrollment in the LDN program were designated as standard of care screened donors. Donors screened on or after the date of the TC’s enrollment in the LDN program were attributed to the program.
Data Analyses
Descriptive statistics were used to summarize the characteristics and outcomes of our cohort using frequencies and percentages for categorical variables, and medians and interquartile ranges for continuous variables, as none were normally distributed. Bivariate analyses were performed to compare the characteristics and outcomes of self-advocates and patients with an advocate using chi-squared tests or Fisher’s exact tests for categorical variables and non-parametric Wilcoxon tests for continuous variables. Similarly, bivariate analyses were performed to compare the characteristics of patients who did and did not receive LDKT at UAB. To determine if a specific advocate relationship was associated with LDKT, dichotomous variables for each type of patient-advocate relationship were created, given that patients may have more than one advocate in the LDN program. Patients with more than one independent advocate were deemed to have multiple advocates. Chi-squared tests or Fisher’s exact tests were then used to compare proportions of each advocate relationship type between patients who achieved LDKT and those who did not.
To assess the likelihood of LDKT for self-advocates, TCs were followed from the date of first LDN class until the earliest of receipt of LDKT, receipt of DDKT, receipt of transplant at another institution, death, or administrative end of study (11/22/2019). Cox proportional hazards regression was performed to compare the likelihood of LDKT between LDN patients with an advocate and self-advocates. Variables significant at p-value less than or equal to 0.10 on unadjusted analyses were included in multivariable analyses and proportionality was verified visually via log(-log survival) plots for covariates. Three patients with unknown marital status were excluded, for a total of 124 patients included in all multivariable analyses. The final model included self-advocate status, race, and marital status.
To assess the impact of LDN enrollment on donor screenings for self-advocates, survival analyses were performed for repeated screening events utilizing an ordered events conditional model described by Prentice, Williams and Peterson.16 Data were structured in the standard counting process form with time intervals determined by LDN enrollment and/or donor screening events. Events occurring on the same day for a recipient were offset by 0.01 days to ensure use of all records. Screening events were tracked within each TC by a stratum variable indicating the specific event number for the patient. Dependence between repeated screening events for a common TC were accounted for using the robust variance estimator. Specifically, the repeated events model uses time from the beginning of the study, accounts for the full course of patient observation, assumes that an event cannot occur until the prior event has occurred, and provides estimates of hazard ratios that indicate the rate of attainment of observed events relative to the reference group. Study start was designated as the date of receipt of a patient’s transplant referral and TCs were followed until the earliest of receipt of LDKT, receipt of DDKT, receipt of transplant at another institution, death, or administrative end of study (11/22/2019). LDN enrollment was coded as a time varying indicator defined by the transplant candidate’s date of first LDN class, after which patients were designated as either a self-advocate or a patient with an advocate in the LDN program. Our model used main effects for LDN enrollment, race, and marital status and an interaction between LDN enrollment and advocate type. This model facilitated evaluation of estimated effects of LDN participation for self-advocates and patients with an advocate, and allowed for comparison of donor screening rates between advocate types after LDN enrollment.
Sensitivity analyses were performed to account for an updated race variable (n=6) and final candidacy status. Exclusion of candidates ultimately deemed unsuitable for transplantation (n=11) or censoring the above described models using the date of this decision, confirmed our inferences.
All analyses were performed with SAS 9.4 (Cary, NC) and statistics were two-sided with significance at p < 0.05.
RESULTS
Cohort Characteristics
Our study population included 127 TCs who were enrolled in the UAB LDN program from initiation in April 2017 until the end of June 2019. Of these participants, 25 (20%) served as self-advocates and 102 (80%) had a friend or family member advocating on their behalf (Table 1). Self-advocates and patients with an advocate were of similar median ages (52.1 years vs. 57.7 years, p=0.25). However, self-advocates were more likely to be female and Black in comparison to patients with an advocate (68% vs. 51%, p=0.13 and 80% vs. 65%, p=0.14, respectively). More specifically, more than half of the self-advocates were both Black and female (56%). Self-advocates were significantly less likely to be married in comparison to patients with an advocate (19% vs. 58%, p<0.01). Both groups had similar proportions of patients with less than a college degree (28% vs. 33%, p=0.77)(Table 1). TCs who became self-advocates at LDN enrollment had similar median days in our standard of care (i.e., not enrolled in the LDN program) as patients who identified an advocate in the LDN program (225 days vs. 273.5 days, p=0.11) (Table 1).
Table 1.
Transplant Candidate Characteristics by Self-Advocacy Status
| Total N=127 N (%) | Self-Advocates N=25 N (%) | Patients w/ Advocate N=102 N (%) | p-value | |
|---|---|---|---|---|
| Age (Median Years, IQR) | 55.3 (47.3, 62.5) | 52.1 (48.1, 59.9) | 57.7 (47.2, 63.0) | 0.25 |
| Female | 69 (54.3) | 17 (68.0) | 52 (51.0) | 0.13 |
| Black | 86 (67.7) | 20 (80.0) | 66 (64.7) | 0.14 |
| Marital Status | ||||
| Married | 65 (52.4) | 6 (19.4) | 59 (57.8) | 0.01 |
| Not Married | 59 (47.6) | 18 (72.0) | 41 (40.2) | |
| Unknown | 3 (2.3) | 1 (4.0) | 2 (1.9) | |
| Education Level | ||||
| <College Degree | 41 (32.3) | 7 (28.0) | 34 (33.3) | 0.77 |
| >College Degree | 23 (18.1) | 4 (16.0) | 19 (18.6) | |
| Unknown | 63 (49.6) | 14 (56.0) | 49 (48.0) | |
| Time to LDN Class (Median Days, IQR) | 268 (195, 699) | 225 (161, 330) | 273.5 (196, 786) | 0.11 |
| # Standard of Care Screened Donors (Median, IQR) | 0 (0, 1) | 0 (0, 0) | 0 (0, 1) | 0.07 |
| # Screened Donors after LDN Enrollment (Median, IQR) | 1 (0, 2) | 0 (0, 1) | 1 (0, 2) | 0.06 |
| Total # of Screened Donors (Median, IQR) | 1 (0, 3) | 0 (0, 3) | 1 (1, 3) | 0.03 |
| LDKT | 25 (19.7) | 1 (4.0) | 24 (23.5) | 0.03 |
| Time to Transplantation* (Median Days, IQR) | 243 (146, 306) | 194 | 243 (140, 330.5) | 0.84 |
Among patients that received LDKT
Living Donor Kidney Transplantation
Among the 127 TCs, 25 (20%) LDKT were performed at UAB after LDN enrollment (Table 2). Patients who received LDKT had similar median ages in comparison to participants who did not receive LDKT (57.5 years vs. 55.3 years, p=0.86). Patients who did not receive LDKT were more likely to be female (57% vs. 44%, p=0.25) and significantly more likely to be Black compared to those who received LDKT (73% vs. 48%, p=0.02). Moreover, those who achieved LDKT were more likely to be married than those who did not (68% vs. 47%, p=0.06). Both groups had similar proportions of participants with less than a college degree (32% vs. 32%, p=0.94) (Table 2).
Table 2.
Transplant Candidate Characteristics by LDKT Status
| LDKT N=25 N (%) | No LDKT N=102 N (%) | p-value | |
|---|---|---|---|
| Age (Median Years, IQR) | 57.5 (47.3, 64.5) | 55.3 (47.7, 62.3) | 0.86 |
| Female | 11 (44.0) | 58 (56.9) | 0.25 |
| Black | 12 (48.0) | 74 (72.6) | 0.02 |
| Marital Status | |||
| Married | 17 (68.0) | 48 (47.1) | |
| Not Married | 8 (32.0) | 51 (50.0) | 0.15 |
| Unknown | 0 (0.0) | 3 (2.9) | |
| Education Level | |||
| <College Degree | 8 (32.0) | 33 (32.4) | |
| >College Degree | 4 (16.0) | 19 (18.6) | 0.94 |
| Unknown | 13 (52.0) | 50 (49.0) | |
| Advocate Relationship | |||
| Spouse/Significant Other | 15 (60.0) | 33 (32.4) | 0.01 |
| Parent | 2 (8.0) | 10 (9.8) | 1.00 |
| Child | 5 (20.0) | 17 (16.7) | 0.69 |
| Sibling | 2 (8.0) | 10 (9.8) | 1.00 |
| Other Family | 1 (4.0) | 5 (4.9) | 1.00 |
| Friend | 1 (4.0) | 4 (3.9) | 1.00 |
| Self | 1 (4.0) | 24 (23.5) | 0.03 |
| Multiple Advocates | 4 (16.0) | 7 (6.9) | 0.22 |
There were 140 advocates paired with the 102 patients with an advocate. Of the patients with an advocate, 11% (11/102) had more than one independent advocate. There were similar proportions of patients with multiple advocates who received LDKT and who did not (16% vs. 7%, p=0.22). Most advocate types such as parents, children, siblings, other family members or friends were not associated with LDKT (Table 2). However, spousal or significant other advocacy was the most prevalent advocate type and was also significantly more common among patients who received LDKT in comparison to patients who did not (60% vs. 32%, p=0.01).
Of the 25 LDN participants who achieved LDKT, only one self-advocate received LDKT compared to 24 of the patients with an advocate (4% vs. 24%, p=0.03) (Table 1). In unadjusted analyses, self-advocates were 84% less likely to achieve LDKT in comparison to patients with an advocate (hazard ratio (HR): 0.16, 95%CI: 0.02-1.18, p=0.07) (Table 3). Moreover, unmarried patients (HR: 0.50, 95%CI: 0.22-1.15, p=0.10) and Black patients (HR: 0.39, 95%CI: 0.18-0.85, p=0.02) were less likely to achieve LDKT in comparison to married and non-Black patients, respectively. Though not significant, self-advocates were 78% less likely to receive LDKT compared to patients with an advocate independent of race and marital status (adjusted hazard ratio (aHR): 0.22, 95%CI: 0.03 – 1.66, p=0.14). Alternatively, Black race remained significantly associated with decreased likelihood of LDKT in comparison to non-Black patients independent of self-advocacy and marital status (aHR: 0.43, 95%CI: 0.20-0.95, p= 0.04) (Table 3).
Table 3.
Cox Proportional Hazard Models for Likelihood of LDKT
| Unadjusted | Adjusted | |||
|---|---|---|---|---|
| Hazard Ratio (95% CI) | p-value | Hazard Ratio (95% CI) | p-value | |
| Self-Advocates vs. Patients with Advocate | 0.16 (0.02 - 1.18) | 0.07 | 0.22 (0.03 - 1.66) | 0.14 |
| Black vs. Non-Black | 0.39 (0.18 – 0.85) | 0.02 | 0.43 (0.20 – 0.95) | 0.04 |
| Not Married vs. Married | 0.50 (0.22 – 1.15) | 0.10 | 0.69 (0.29 – 1.62) | 0.39 |
Final adjusted model included self-advocacy status, race, and marital status.
Donor Screenings
Among the 127 TCs, there were 471 donor screenings. Of these donor screenings, 117 occurred during standard of care prior to a TC’s enrollment in the LDN program, with an overall median of 0 (IQR: 0, 1) donors screened per patient (Table 1). Among the 48 patients (38%) who had at least 1 screened donor during standard of care, the median number screened was 1 (IQR: 1, 3). Alternatively, 354 donor screenings occurred on or after a TC’s date of LDN enrollment, with an overall median of 1 (IQR: 0, 2) donor screened per patient (Table 1). During this time period, there were 70 patients (55%) who had at least 1 screened donor, and of those who had a donor screened, the median number screened was 2 (IQR: 1, 6).
In comparison to patients with an advocate, self-advocates were found to have lower median number of donor screenings following LDN enrollment (0 for self-advocates (IQR: 0, 1) vs. 1 for patients with an advocate (IQR: 0, 2), p=0.06) (Table 1). With LDN enrollment as a time varying covariate, the rate of donor screenings during standard of care increased 2.5-fold after LDN enrollment for patients who became self-advocates independent of race or marital status (aHR: 2.48, 95%CI: 1.26-4.90, p=0.009). Similarly, the rate of donor screenings during standard of care increased 3.4-fold after LDN enrollment for patients who identified an advocate, independent of race or marital status (aHR: 3.39, 95%CI: 2.20-5.24, p<0.0001) (Table 4). Following LDN enrollment, the rate of donor screenings among self-advocates in comparison to patients with an advocate was lower, though not significant (aHR: 0.73, 95%CI: 0.37-1.44, p=0.37) (Table 4).
Table 4.
Ordered Events Conditional Model for Rate of Donor Screenings
| Adjusted Hazard Ratio (95% CI) | p-value | |
|---|---|---|
| LDN Self-Advocates vs. LDN Patients with Advocate | 0.73 (0.37 – 1.44) | 0.37 |
| LDN Self-Advocates vs. Standard of Care | 2.48 (1.26 – 4.90) | 0.009 |
| LDN Patients with Advocate vs. Standard of Care | 3.39 (2.20 – 5.24) | <0.0001 |
Final adjusted model included main effects for LDN enrollment, race, and marital status and an interaction between LDN enrollment and advocate type.
DISCUSSION
This study compared likelihood of LDKT between self-advocates and patients with an advocate after enrollment in the UAB LDN program. We demonstrated that self-advocates had significantly fewer LDKT, and while not significant, lower likelihood of LDKT compared to LDN participants who had a friend or family member advocating on their behalf. Only one of the 25 self-advocates in this study achieved LDKT. Moreover, having a spouse or significant other as an advocate was significantly associated with LDKT in comparison to any other advocate type. These data suggest that having an advocate, and specifically a spousal/significant other advocate, may increase likelihood of LDKT. Understanding that a TC’s ability to achieve LDKT is contingent upon identifying a donor, number of donor screenings were also assessed by advocacy type. Self-advocates had fewer median donor screenings, though rate of donor screenings after LDN enrollment was not significantly different for self-advocates and patients with an advocate. Importantly, we demonstrated that the rate of donor screenings during standard of care increased 2.5-fold (95% CI: 1.26 – 4.90) after LDN enrollment for self-advocates and 3.4-fold (95% CI: 2.20 – 5.24) after LDN enrollment for patients with an advocate. These data suggest that advocacy training is beneficial for self-advocates, but there may be a benefit in separating the advocacy role from the TC to achieve LDKT.
Many of the challenges faced by TCs when identifying a potential living donor have been described. In a thematic synthesis of 39 studies exploring the perceptions of chronic kidney disease patients with regard to LDKT, Hanson et al. highlighted the recurrent theme of Cautious Donor Recruitment.15 Many patients lack knowledge about live donation and transplantation, but a lack of knowledge about how to ask someone to donate has been found to be the most prevalent barrier to pursuing LDKT.6–8,15 Other studies have demonstrated that many patients awaiting transplantation are not willing to discuss LDKT with others.6 Some potential recipients find the act of asking someone to donate an organ to be embarrassing, uncomfortable, and potentially even offensive.6,15 In short, there appears to be both a knowledge deficit as well as a psychosocial hurdle for TCs.
The results from our study of self-advocacy within the LDN program support this notion. LDN advocacy training provides participants with information regarding renal failure, transplantation, and live donation as well as conversational and social-networking strategies.9 Thus, for TCs who serve as self-advocates, the education from this training may enable them to initiate more conversations than they would have otherwise given that LDN enrollment was shown to significantly increase the rate of donor screenings. However, the increase in rate of donors screened after LDN enrollment was greater for patients who had someone else trained to advocate for them, emphasizing the importance of separating the “ask” from the “need.”
The LDN program was designed to remove the burden of asking from the candidate, similar to a number of programs including the Live Donor Champion Program and the Kidney Coach Program.8–10,17,18 In implementation, however, the provision of advocacy training to TC serving as self-advocates has been a realized function of these programs for a sizable subset of participants who do not identify a champion, kidney coach or advocate. LaPointe Rudow et al. reported approximately 30% of participants in the Kidney Coach program were self-coaches.10 In our current study, 20% of TCs enrolled in the LDN program served as self-advocates. Moreover, we found that self-advocates were primarily female (68%), Black (80%), and not married (72%), suggesting this population may be at higher risk for an inadequate support system. In fact, 56% of self-advocates were Black females – a population with known disparities in access to LDKT which has also been shown to seek health information less and advocate for themselves less in healthcare settings.19–21 Moreover, Reeves and colleagues demonstrated that aspects of multidimensional poverty, such as low household income or unemployment, and limited education and health insurance are experienced more often by Black Americans, suggesting higher levels of social vulnerability.22 Thus, the phenotype of this participant population suggests that while self-advocacy is associated with fewer LDKT, it may be a symptom of greater social vulnerability that disadvantages patients in pursuit of LDKT.
Although this study is the first to evaluate the success of self-advocates in one of the several programs designed to separate the advocacy role from the patient to increase LDKT, it does have several limitations. First, it is a single center study from a transplant center located in the southeastern United States. The demographics of LDN participants may differ from those in similar programs across the United States which may limit the generalizability of our findings. However, the self-advocate phenotype described is consistent with a population that faces known, longstanding disparities in access to LDKT which make our findings both important and relevant for the larger transplant community. Second, as this was a retrospective study, we did not have data to more fully describe the self-advocate phenotype with regard to individual-level risk factors for vulnerability, such as more complete education-level data or socioeconomic status that may influence the relationship between self-advocacy and likelihood of LDKT. Similarly, we did not have data regarding LDN advocacy training completion and were unable to determine if all participants garnered equal benefit from LDN participation. However, the first advocacy training session provided education regarding ESRD, live donation, and kidney transplantation.9 Thus, this training session alone addressed one of the most prevalent barriers to LDKT, suggesting that even after the first class, as we defined LDN enrollment, donor screenings were attributable to the program. Lastly, given the study’s small sample size, our analyses were not powered to demonstrate a statistically significant difference in likelihood of LDKT between advocate types.
CONCLUSIONS
We compared the likelihood of LDKT after enrollment in the UAB LDN Program by advocate type. Our study suggests that advocacy training was beneficial for all participants but separating the advocacy role from the patient may increase the likelihood of LDKT. Lastly, the potential relationship between self-advocacy and social vulnerability warrants further exploration and may help guide resource allocation and extend programmatic reach.
HIGHLIGHTS.
Self-advocates were primarily female, Black, and unmarried
Self-advocates had lower likelihood of LDKT compared to patients with an advocate
Having a spouse/significant other advocate was significantly associated with LDKT
LDN enrollment significantly increased donor screenings for both advocate types
ACKNOWLEDGEMENTS
The authors would like to recognize and thank Daagye Hendricks, Kimberly Baldwin, and Beverly Berry for their help and support of this work as UAB LDN Navigators.
Funding: This work was supported by the NIH/NIDDK Interdisciplinary Training in Kidney-Related Research [grant number T32 DK007545] and the American College of Surgeons Resident Research Fellowship Award (Trainee: Kale), and the UAB School of Medicine AMC 21 (PI: Locke). No funding source had no involvement in the study design, collection, analysis or interpretation of data, or writing or submission of this manuscript.
Footnotes
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CONFLICT OF INTEREST
The authors declare no conflicts of interest.
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