Abstract
Patients are not always aware of listing criteria and offer acceptance across transplant programs. Factors such as age and body mass index can impact access to transplant as centers have different candidate criteria. Therefore, we created a transplant center search tool (transplantcentersearch.org) (TCST) to help patients find comparative information on transplant programs. We conducted a cross-over randomized controlled trial (RCT) to assess whether the TCST improved comprehension compared to the existing Scientific Registry of Transplant Recipients website among adults seeking kidney transplant at two centers. To assess comprehension participants were asked to use the TCST and the SRTR website to identify which transplant program within a prespecified area had the most recipients over 70 years of age; and which programs had the most recipients with BMI >40. Participants were asked to provide qualitative feedback on using both websites. 68 candidates participated in the RCT. Participants were more likely to identify the correct program when using the TCST compared to the existing SRTR website (OR 8.13, 95% C.I 1.87–35.33). Participants stated they preferred the TCST over the SRTR website (52.9% vs. 25.0%, respectively, p=0.009). With increased comprehension, patients would be better equipped to identify programs that transplant patients like them. ClinicalTrials.gov:NCT03610555.
Keywords: Clinical Trial, Patient-centered, Program Selection, Transplant
INTRODUCTION
In the 2022 the total number of adults on the waiting list for kidney transplant in United States exceeded 140,000 with 12.4% of candidates having 5 years or more of waiting time,1 When seeking a transplant program, patients with late-stage chronic kidney disease (CKD) or end-stage kidney disease (ESKD) do not know all the ways programs may differ in risk tolerance and expertise, especially with regards to complex candidates and donors.2 If listed for transplant at a center which has a low rate of transplanting individuals with certain characteristics (eg, older age, high body mass index (BMI)) or certain comorbidities (eg, cardiovascular disease) or low rates of transplantation with hard to place donors (eg, hepatitis C positive, high kidney donor profile index (KDPI)) a patient may have a prolonged time on the waiting list before receiving an organ offer. Prolonged waiting times on dialysis are associated with increased morbidity and mortality.3,4 As comorbid conditions are increasingly common in patients with ESKD5, informing patients of their choice of transplant program and donor criteria to improve their chances of undergoing transplant and post-transplant outcomes is critical.
The Scientific Registry of Transplant Recipients (SRTR) is under contract from the Health Resources and Services Administration (HRSA) to provide statistical and analytic support to the Organ Procurement and Transplantation Network (OPTN) for the formulation and evaluation of organ allocation policy. To accomplish this goal, SRTR releases semi-annual reports on every transplant program in the US; while maintaining a program search tool for patients seeking transplantation. Historically, feedback from the patients and family members indicate that the SRTR website, program specific reports (PSRs), and program search were difficult to navigate and interpret.6 The SRTR contract does not allow for conducting RCTs. As a results, the authors secured external funding from AHRQ to develop the new transplant center search tool (TCST), available at transplantcentersearch.org. TCST developed with feedback from the general public, local transplant candidates, their family members and national transplant recipients to refine patient-friendly design elements to provide the public with comparative information on transplant programs in a patient-centered fashion and has been described elsewhere.2,7,8 Feedback was also collected using Amazon Mechanical Turk randomized surveys,9 interviews and focus groups2 and subsequent usability testing of functioning prototypes with local candidates.10 TCST provides comparative information on transplant rates, utilization of deceased and living donors, utilization of hard to place donors (eg, high KDPI), and the number of recipients matching certain clinical and demographic factors. Information on recipients is prioritized or “personalized” according to the user’s profile via information collected after entering a ZIP code and search radius for the search. To protect user privacy, TCST does not save or share identifying and clinical information provided by the user.
We hypothesized that the new TCST would better inform patients of programs that have experience transplanting patients like them, when compared to the existing SRTR website and program search tool. By using tools tailored to an individual’s clinical profile, patients and their referring providers can better navigate the system of transplant programs with varying candidate acceptance criteria, creating greater satisfaction with the program selection process, and resulting in increased chances of being transplanted. TCST may also be used to assess the availability of different living and deceased donor options patients may pursue to expand their donor pool. Candidates who are turned down at one program could use the tool to find other programs that may be willing to transplant patients like them.
METHODS
Participants and Setting
We conducted a cross-over, randomized controlled trial (RCT) with a one-to-one allocation ratio to evaluate the effectiveness of the new TCST among kidney transplant candidates. Exclusion criteria for participation were inability to speak or understand English, visual impairment, and inability to provide consent. Adults (age 18+) were recruited to participate from the waiting list or in the process of being evaluated for deceased donor kidney transplant at two urban transplant programs in the Midwest. Patients were approached by mail with follow up via a phone call with an institutional review board approved script for attaining consent and conducting the intervention.
If a participant did not have their own electronic device or access to the internet, the study team sent the participant an internet-enabled study iPad to complete the study session. Participants were compensated with a $40 gift card for their time.
Outcomes
The primary outcome was comprehension of the comparative information on transplant provided on the SRTR and TCST websites. To assess comprehension, participants were asked to:
(question 1) identify which transplant program in a given area had the most experience transplanting recipients over the age of 70
(question 2) identify the program in a given area with the most experience transplanting patients with BMI >40
Zip codes and travel distance of 50 miles for each question were preselected to ensure that only three transplant programs were assessed in the search results on both websites. For each ZIP code, a single program had the greatest volume of recipients matching the criteria from the study question. Participants could respond with any one of the three programs listed in the search results or alternatively, a participant could respond “Don’t know” to reflect potential indecision and to reduce the likelihood of missing data. The primary outcome was whether the participant selected the correct transplant program per each of the two questions, with “Don’t know” being considered a wrong answer. All data and program names appearing on the TCST and SRTR website were real and up to date with the most recent SRTR PSRs.
Secondary outcomes included participant perceptions of the SRTR website and TCST—including impressions of usefulness and preference for either tool. We also evaluated decisional conflict, measured using the Ottawa Decisional Conflict Scale.11
Randomization and Blinding
Participants were stratified by transplant center site and block randomized to one of the four groups using permuted block randomization with blocks of size four.
Arm 1: SRTR website first, Question 1 first
Arm 2: SRTR website first, Question 2 first
Arm 3: TCST first, Question 1 first
Arm 4: TCST first, Question 2 first
Figure 1 presents the CONSORT Flow Diagram reporting screening, randomization, intervention allocation, and analysis outcomes.
Figure 1:
CONSORT Flow Diagram
All team members excluding a biostatistician were blinded to the randomization assignments until time of the intervention. Blinding was maintained by creating sealed envelopes that were opened after enrollment to inform the coordinator of the allocation.
Trial Design
Before the intervention, a study coordinator explained the study design, highlighting that the participant would use hypothetical scenarios (ie, age over 70, BMI over 40) as opposed to their own health status and clinical data to complete the study. Prior to randomization, participants were screened to assess their understanding of the study design, specifically the hypothetical nature of the trial scenarios. Each participant had 30 minutes to view each of the two websites and answer the questions in their assigned order. After viewing each website, responses to the comprehension questions and perceptions of the TCST and SRTR website were collected. All participants were verbally administered a brief demographic survey (see eMethods 1) as well as verbal subjective health literacy12 and numeracy surveys prior to randomization.13
During an a priori designed vanguard phase of the study, the protocol stipulated that participants navigate the websites by themselves without assistance from study personnel. Of the five participants recruited for this phase, none were able to navigate to the data needed to answer the study questions, on the results pages. In light of these challenges, the protocol was amended such that the study coordinator conducting the study visit navigated through both websites to the search results pages—allowing the participants to read each page between the home pages and the search results. We feel that the modification was justified and supports the intended implementation strategy, which is dependent on providers and patients using the TCST during a care visit to support decision making and education.
Statistical Analysis
The trial was powered to detect a difference of 26% between the two websites, assuming no correlation between the two websites, with 66 participants. If some correlation was present, smaller numbers would be needed to detect the 26% difference.
The primary outcome of answering the question correctly was analyzed using mixed effects logistic regression with a random intercept for participant, since each person was asked two questions. The fixed effect was for TCST vs. SRTR website. Subgroup analyses were performed by: question (regarding age or regarding BMI), sex, race, single item health literacy scale, education level, insurance type, household income, self-described health, and subjective numeracy scale. For the subgroup analysis by question, random intercepts were not needed, as no participant received the same question more than once.
Qualitative data consisted of direct quotes from the participants. This data was transcribed verbatim and coded to identify common themes. Transcripts of study sessions were analyzed using Dedoose Version 7.0.23 (Los Angeles, CA: Sociocultural Research Consultants, LLC). A senior analyst (W.M) developed a preliminary code book using a combination of deductive and inductive approaches to organize feedback on the study tools and to allow for emergent themes. Deductive codes were defined a priori to be responsive to focus points from the discussion guide, direct feedback on discrete design elements (e.g., drop down menu for recipient criteria), navigation, overall impressions of the tools, and findings from our prior studies2,7,8,14. A junior analyst (K.I) was trained to use the codebook using a sample of study transcripts and their code applications were reviewed by W.M and the Principal Investigator (A.I) for consistency and alignment with the original code book. Once trained the junior analyst proceeded to code the remaining transcripts. Quantitative analyses were performed using SAS 9.4 (SAS Institute, Cary, NC, USA) and R software version 4.0 (www.r-project.org).
The study was reviewed and approved by the Hennepin Healthcare Research Institute Human Research Protection Office. All study activities were conducted remotely via Zoom© teleconference services. All sessions were recorded to evaluate protocol fidelity and to facilitate the analysis of qualitative data collected through open-ended questions. ClinicalTrials.gov number, NCT03610555.
RESULTS
Participant Characteristics
68 adults advanced through the screening protocol and were randomized. Of these, 41.2% of participants identified as female. 72.1% of participants identified as non-Hispanic White, 20.6% identified as African American and 7.4% indicated another racial category. Only 7.4% of participants reported Latino ethnicity. The median age was 57.2 years (standard deviation, SD 14.5 years). Education levels varied with 25.0% having attained a high school degree or less, 26.5% completing some college, 23.5% completing college, and 25.0% having attained further graduate or professional training. The mean score on the Single Item Subjective Literacy Scale was 1.5 (SD 0.8). A score of 2 or more indicates some difficulty interpreting printed health materials (16.2%). Mean scores on the numeracy ability subscale and numeracy preference subscale were 4.4 (SD 1.3) and 4.7 (0.9), respectively. Higher scores on the 1 – 6 rating scale indicate greater subject numeracy ability and preference for numerical information versus text-based information (Table 1). Participants’ clinical profiles included a range of comorbid conditions including high blood pressure (89.7%), cancer (13.2%), heart failure (8.8%) and overweight status (47.1%). 82.4% of participants were active on the waiting list at a transplant program. Additional clinical characteristics are reported in eTable 1. One participant experienced technical difficulties and was unable to complete the study session; their data were not included in the final analyses. 3 participants did not own their own web-enabled devices and used the study iPad.
TABLE 1:
Participant Demographics
| Percent (Count) | |||||
|---|---|---|---|---|---|
| Characteristics | Total | SRTR / Q1 first (Arm 1)* | SRTR / Q2 first (Arm 2)* | TCST/Q1 first (Arm 3)* | TCST/Q2 first (Arm 4)* |
| Total | 100.00% (68) | 100.00% (12) | 100.00% (19) | 100.00% (18) | 100.00% (19) |
| Sex | |||||
| Female | 41.18% (28) | 41.67% (5) | 42.11% (8) | 50.00% (9) | 31.58% (6) |
| Male | 58.82% (40) | 58.33% (7) | 57.89% (11) | 50.00% (9) | 68.42% (13) |
| Race | |||||
| Non-Hispanic White | 72.06% (49) | 75.00% (9) | 57.89% (11) | 66.67% (12) | 89.47% (17) |
| African American | 20.59% (14) | 25.00% (3) | 26.32% (5) | 22.22% (4) | 10.53% (2) |
| Other | 7.35% (5) | 0.00% (0) | 15.79% (3) | 11.11% (2) | 0.00% (0) |
| Ethnicity | |||||
| Latino | 7.35% (5) | 0.00% (0) | 5.26% (1) | 5.56% (1) | 15.79% (3) |
| Non-Latino | 91.18% (62) | 100.00% (12) | 94.74% (18) | 94.44% (17) | 78.95% (15) |
| Missing | 1.47% (1) | 0.00% (0) | 0.00% (0) | 0.00% (0) | 5.26% (1) |
| Age, mean (SD) | 57.15 (14.54) | 63.09 (13.23) | 55.00 (15.29) | 59.06 (12.68) | 54.05 (15.89) |
| Age | |||||
| <50 | 20.59% (14) | 8.33% (1) | 21.05% (4) | 16.67% (3) | 31.58% (6) |
| 50-<65 | 45.59% (31) | 25.00% (3) | 52.63% (10) | 55.56% (10) | 42.11% (8) |
| 65+ | 32.35% (22) | 58.33% (7) | 26.32% (5) | 27.78% (5) | 26.32% (5) |
| Missing | 1.47% (1) | 8.33% (1) | 0.00% (0) | 0.00% (0) | 0.00% (0) |
| Education Level | |||||
| Less than High School | 2.94% (2) | 0.00% (0) | 5.26% (1) | 5.56% (1) | 0.00% (0) |
| High School | 22.06% (15) | 16.67% (2) | 42.11% (8) | 16.67% (3) | 10.53% (2) |
| Some College | 26.47% (18) | 33.33% (4) | 10.53% (2) | 44.44% (8) | 21.05% (4) |
| College | 23.53% (16) | 41.67% (5) | 21.05% (4) | 5.56% (1) | 31.58% (6) |
| More than college (e.g., MA, PHD, MD) | 25.00% (17) | 8.33% (1) | 21.05% (4) | 27.78% (5) | 36.84% (7) |
| Single Item Health Literacy Scale, mean (SD) | 1.53 (0.84) | 1.33 (0.49) | 1.84 (1.01) | 1.39 (0.78) | 1.47 (0.84) |
| Single Item Health Literacy Scale > 2 | |||||
| Yes | 16.18% (11) | 0.00% (0) | 31.58% (6) | 16.67% (3) | 10.53% (2) |
| No | 83.82% (57) | 100.00% (12) | 68.42% (13) | 83.33% (15) | 89.47% (17) |
| Subjective Numeracy Scale, mean (SD) | 4.53 (1.04) | 4.84 (0.69) | 4.27 (1.29) | 4.42 (1.00) | 4.68 (0.99) |
| Ability subscale, mean (SD) | 4.41 (1.32) | 4.92 (0.94) | 4.20 (1.54) | 4.21 (1.31) | 4.50 (1.29) |
| Preference subscale, mean (SD) | 4.65 (0.97) | 4.77 (0.70) | 4.36 (1.20) | 4.64 (0.89) | 4.87 (0.92) |
SRTR = Scientific Registry of Transplant Recipients
TCST = Transplant center search tool
Q1= (question 1) identify which transplant program in a given area had the most experience transplanting recipients over the age of 70
Q2 = (question 2) identify the program in a given area with the most experience transplanting patients with BMI >40
Comprehension Evaluation
After reviewing the search results for the pre-specified Zip codes, participants were asked to identify which transplant program had the most recipients with age over 70 (Q1) and BMI >40 (Q2). For each ZIP code, there was only one correct answer (eFigures 1 – 2). Overall, participants viewing the new TCST were more likely to select the correct transplant program when compared to those who viewed the interactive report card on the SRTR website (74% for SRTR website vs. 95% for TCST, Odds ratio (OR) 8.1, 95%CI 1.87, 35.33, p = 0.005) (Figure 2, Table 2). Although the trial was not powered to determine differences between prespecified subgroups we found that participants with the following characteristics were more likely to select the correct transplant program when using TCST: women (OR 13.8, 95% CI 1.6, >100, p = 0.017), White (OR 11.2, 95% CI 1.5, 86.9, p = 0.02), more than a high school education (OR 12.3, 95% CI 1.6, 94,1, p = 0.016), lower subjective numeracy (OR 4.6, 95% CI 1.1, 19.3, p = 0.035). We did not find a statistically significant advantage for using TCST among participants who reported needing assistance reading printed health materials. We also did not find a statistically significant advantage of TCST for the question on which program had the most experience performing transplant in patients with BMI > 40; study participants viewing both websites were generally able to select the correct transplant program. [94% for SRTR website vs 97% for TCST, OR 1.82 (95% C.I 0.16, 21.09)]. See eTable 2 for study results by arm.
Figure 2:
Odds Ratios with 95% Confidence Intervals for the Likelihood of Answering the Comprehension Questions Correctly Comparing Transplantcentersearch to SRTR Tools
Table 2:
Responses by Website and Study Question
| Incorrect, n (%) | Correct, n (%) | Missing, n (%) | |
|---|---|---|---|
| SRTR (n=66) | 17 (25.8) | 49 (74.2) | 1 (1.5) |
| Question 1 | 15 (48.3) | 16 (51.6) | 0 (0.0) |
| Question 2 | 2 (5.7) | 33 (94.3) | 1 (2.9) |
| TCST (n=67) | 3 (4.5) | 64 (95.5) | 0 (0.0) |
| Question 1 | 2 (5.6) | 34 (94.4) | 0 (0.0) |
| Question 2 | 1 (3.2) | 30 (96.8) | 0 (0.0) |
Participant Preferences, Feedback and Decision Conflict
Upon completion of the primary study activities participants were asked to provide feedback on both tools including preference and comparisons. 52.9% of participants indicated a preference for the new TCST while 25.0% preferred the SRTR website and 22.1% reported no preference (p = 0.009 among participants with a preference). Qualitative data collected through open-ended questions revealed that participants preferred the new TCST because of factors such as the convenience of navigation, the comparative presentation and clarity of the information. Reasons for preferring the SRTR website were similar, though some participants indicated that the SRTR website offered more information on programs. Representative quotations can be found in eTable 3.
Overall, participant responses to the Effective Decision Subscale of the Ottawa Decisional Conflict Scale were not significantly different between the websites, with mean (SD) scores of 15.5 (SD 19.6) and 13.4 (SD19.7) for SRTR and the new TCST, respectively (eTable 4). Lower scores on the 100-point scale indicate reduced decisional conflict over a decision. Similarly, more users of TCST indicated that they felt they had made an informed choice (82.2%) compared to SRTR users (76.4%) (eTable 5). We did not find a statistically significant difference in the proportion of participants who were able to identify the correct center when accounting for differences in decisional conflict (p=0.249) and after accounting for website and after adjusting for website and question being posed (p=0.353).
DISCUSSION
In this RCT, we found that participants who used the new TCST were more likely to identify the correct transplant program when prompted to select the program that met certain recipient criteria (eg, age > 70, BMI >40) when compared to using the SRTR interactive website. This was true for participants of both genders, though female participants were more likely to select the correct transplant program. Similarly, White participants were more likely to select the correct transplant program. While reasons for preferring either tool varied, participants indicated that they preferred the ability to tailor their search to their own clinical profile on the new TCST (eg, age, BMI, infectious disease status, cause of organ failure). There was no statistical difference in reported decisional conflict between the two tools. 52.9% of participants indicated a preference for the new TCST while 25.0% preferred the SRTR website and 22.1% reported no preference. Participants said navigation, presentation, and clarity were reasons why they preferred the new tool over the existing SRTR website. Additionally, they also liked the ability to personalize the results when using the new tool. Others preferred the existing SRTR website for similar reasons.
The new TCST incorporated design elements that communicate information about differences between transplant programs more effectively than existing approaches; this tool has been described elsewhere.2,10 With increased comprehension and insight into transplant program-level variation, patients would be better equipped to identify transplant programs that transplant patients like them. These findings are significant and represent action towards recommendations from the National Academies of Science, Engineering and Medicine (NASEM), suggesting that patient-centered tools that facilitate informed decision making are necessary for improving access to transplant, reducing disparities, and improving system efficiency.15 Along the same lines, the tool aligns with the ethical principles proposed by the OPTN Ethics Committee to increase transparency in program selection and related decision making (autonomy, procedural justice, equity, and utility) by providing desired, meaningful, and diverse information alongside accessible self-learning in a free and publicly available website.16 Furthermore, TCST has the potential to improve systemwide utility by improving decision-making on donor selection and positively impacting process outcomes like rates of non-use.
In this study we found that when participants used the new tool they were more likely to get to the correct answer and felt that the new tool has more clarity, was easier to personalize because the participant can select multiple characteristics simultaneously such as age and BMI, and it gets the participant all the relevant information they need on one web page. Whereas, with the existing SRTR website, participants had to navigate back and forth between multiple pages of the interactive report to find all the relevant information for each program. The new tool was developed using a patient centered process of testing and refinement. This included online surveys and structured usability testing.11 The SRTR website gives the relevant information in percentages; whereas, the new tool gives the relevant information as absolute numbers. Thus, it is possible that the SRTR website’s use of percentages could require greater numeracy and familiarity with the SRTR website to identify the center with the most experience transplanting patients like them, as the total number of recipients is reported in a different location on the same page.
The new tool will facilitate shared decision making between patients and their clinical providers. This is important because the ability to get a transplant evaluation, be added to a transplant waitlist, and receive a transplant varies greatly based on race, ethnicity, gender, geographic location, socioeconomic status, disability status, and immigration status.12 Based on 678 SRTR and 55,362 OPTN phone logs and emails from patients and their support networks, they requested information about willingness to perform transplants in candidates with specific diseases or demographics.9 The new tool provides information about variation in transplant based on candidate factors such as: geographical location, age over 70, BMI over 35 and 40, blood type non-A1/nonA1B to B candidates, Medicaid insurance, infectious disease (HIV+, hepatitis B+ or C+) status and need for pancreas along with kidney transplant. Although not emphasized in this study, the new tool also provides information about variation in transplant based on donor factors such as: Kidney Donor Profile Index (KDPI) > 85, Increased infectious risk, and hepatitis C+. Others have shown variation in aggressiveness of kidney transplant centers but our tool can identify these relevant programs for patients.13 This difference between transplant centers is consistent with the variation in the structure and process of care based on a survey of kidney transplant centers in the US.14
We did not anticipate that the specific health characteristic used in the study prompt would impact the participant’s answer, however we found that nearly all participants were able to correctly identify the program with the greatest number of recipients with BMI over 40. We suspect that the correct choice was starkly different than the incorrect choices for the BMI over 40 question. The SRTR website gives the percentage of transplants for age over 70 and BMI over 40. In the age over 70 question the percentages varied less, so that the correct answer was more ambiguous. The percentage of transplants done at the correct center of interest with BMI over 40 was around 16.4%. The percentages of the other two centers were around 0%, and 1%. Such variation was not seen with percentages for centers in the age over 70 question. This suggests that the TCST may offer better comprehension when there is greater ambiguity or less pronounced differences between programs.
The SRTR and new tool are first attempts to explain variation in candidate and organ acceptance to the patient community. This personalization technique was inspired from retail websites that give the user options to personalize their search criteria. They will often give categorical choices. This technique works well in retail because the user is only getting the information that they need, reducing cognitive burden. Such efforts to reduce cognitive burden have been recommended by AHRQ guidelines on public reporting of outcome data.15–17
The following limitations should be considered when interpreting the study results. First, none of the five vanguard participants reached the appropriate results pages on either website. Therefore, a study coordinator walked the participants through the websites to the results page instead of having them navigate on their own. This change to the protocol may have impacted the likelihood patients found the correct answer and does not mimic how patients would use the sites were they to locate them on their own. To limit bias, three study coordinators were trained to only navigate the patient to the results pages and were instructed not to assist with comprehension of the information presented to the participant. All interventions were recorded and reviewed by A.I. to ensure that the study protocol was followed. At the same time, our team has considered the possibility that it is better to have patients use the site with their provider, and language on the new TCST website encourages users to consult with their provider during or after use of the tool. Providers could be referring nephrologists, case managers or dialysis social workers. It is also possible that the addition of features to support navigation such as a help page with enhanced FAQs, a video tutorial or artificial intelligence powered chatbot walking patients through the new tool will reduce navigation barriers. We are currently recruiting participants for a qualitative study to develop such navigation and comprehension support and will evaluate the new features in a clinical trial among patients who have yet to be added to the waiting list. The current website provides a toll-free number for SRTR that users can call for support in understanding the data. Second, our study recruited participants from two transplant programs in the Midwest. Broader recruiting and engagement with a more diverse patient population may produce different results, though there is little reason to suspect a regional difference in preference for tools. Future trials will need to recruit patients with end stage renal disease who have yet to identify a transplant program. The data shown in eFigures 1–2 do not represent the information shown to all study participants because SRTR data is updated every 6 months and that study duration was more than 6 months. The list of centers was the same and there remained the same, single “correct” center after the data was updated. Finally, OPTN policy does not mandate the collection of data on all clinical factors that may impact access to transplant such as cardiovascular disease. As a result, both TCST and SRTR are unable to provide patients with nuanced information that would help them to identity centers that have more experience with such patients. When such data is available reliably for all centers through SRTR, we could implement an approach that reflects the nuance of candidate selection criteria.
In conclusion, the new TCST helps patients find transplant programs that have experience with patients like them. In addition to helping patients, such public information is also likely to change transplant program behavior.17–19 Programs currently unwilling to transplant high-risk candidates could see patients choosing a nearby program that does transplant such candidates. This could motivate a risk-averse program to review its practices and potentially amend candidate acceptance criteria. Similarly, the new tool can provide incentives to improve access to transplantation as the tool communicates information on donor options, which may be adapted to expand donor pools. Therefore, the SRTR is considering incorporating similar functionality as the TCST on its redesigned public website, as recommended by transplant providers, patients, families, and donors during the 2022 SRTR Consensus Conference.20
Supplementary Material
ACKNOWLEDGEMENT & FUNDING
This material is based in part upon work supported by the Agency for Healthcare Research and Quality (AHRQ) R01 HS 24527 (A.K.I.) and R01 HS028829 (A.K.I.). This research was also supported by the National Institute of Health’s Center for Advancing Translational Sciences, grants TL1R002493 and UL1TR002494. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institute of Health’s Center for Advancing Translational Sciences and other funders. Additional support comes from AHRQ and the Patient-Centered Outcomes Research Institute (PCORI) grant K12HS026379 (W.T.M.).
DISCLOSURES
Dr. Israni has received research funds awarded to Hennepin Healthcare Research Institute from Gilead for investigator-initiated research related to hepatitis C; is supported by grants and contracts awarded to Hennepin Healthcare from the Health Resources and Services Administration, National Institute of Allergy and Immunology, National Institute of Diabetes and Digestive and Kidney Diseases and the Agency for Healthcare Research and Quality; has served on an advisory board for CSL Behring; and receives consulting fees from Medical Review Institute of America as a physician reviewer. The other authors declare no conflicts of interest.
ABBREVIATIONS
- AHRQ
Agency for Healthcare Research and Quality
- BMI
Body mass index
- CKD
Chronic kidney disease
- ESKD
End stage renal disease
- FAQ
Frequently asked question
- HRSA
Health Resources and Services Administration
- KDPI
Kidney donor profile index
- OPTN
Organ Procurement and Transplantation Network
- PSR
Program specific report
- RCT
Randomized controlled trial
- SRTR
Scientific Registry of Transplant Recipients
- TCST
Transplant center search tool
DATA SHARING STATEMENT
Study data is available from the P.I. upon request.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
Study data is available from the P.I. upon request.