To understand factors that influence interest in LDKT, a cross-sectional study was conducted using survey data collected from patients currently on dialysis. All protocols were approved by the Temple University Institutional Review Board (protocol number 11648).

Surveys were administered both in-person and online. For in-person administration, participants were recruited at two Pennsylvania urban hospital-based hemodialysis units and were approached in the hemodialysis units during their treatment. Online recruitment was done via a post on a private Facebook page dedicated to patients living with ESKD. A Qualtrics link was provide to members of the page and the link took them to the online version. Administration occurred over an 8 week period. All participants were provided information about the survey and its purpose, which was to understand perceptions of LDKT in those with ESKD.

The target population includes patients living with ESKD who are currently on dialysis. The accessible population includes patients living with ESKD who are currently on dialysis at two Pennsylvania urban hospital-based dialysis units or patients across the US engaged in a national, private Facebook group.

Participants were eligible if they were 18 or older and self-identified that they were currently on dialysis. The number who participated reflects a convenience sample of those who completed the survey in the time period.

The survey instrument was developed based on literature (Barnieh et al., 2009; Rodrigue et al., 2008; Barnieh et al., 2017), and our experience working with these populations (Gillespie et al., 2011; Gillespie et al., 2015; Traino et al., 2017). Kidney transplant specific questions included: self-reported health status, transplant candidacy status, years on dialysis, previous receipt of information about kidney transplant from a provider, previous experience asking someone to donate or being offered a kidney, history of kidney transplant (if applicable), and interest in receiving a LDKT and/or DDKT. The full instrument is provided in Supplement 1. Demographic information (gender, race, ethnicity, age, education level, insurance status, cohabitants, health literacy, and source of health information) was also collected via 10 multiple choice questions at the start of the survey. Health literacy was assessed with the Single Item Literacy Screener measure developed by Morris et al. (2006) by asking participants how confident they are filling out medical forms on their own. Five response options were consolidated into three levels of health literacy; often/always, sometimes, and never/rarely corresponded to high, moderate and low literacy, respectively.

Thirty items were developed for the perceptual mapping analysis, divided into five statement blocks to capture constructs important to the LDKT decision (Table 1), such as barriers, facilitators or beliefs. This is done so that perceptual maps can be constructed for each construct to aid in understanding potential persuasive messaging strategies and how the items are related to each other. Statement blocks included:

• Statement block 1: Seven items focused on concerns about approaching someone to discuss living donation of a kidney.

Participants responded to individual survey items by indicating how much they agree or disagree with each statement on a zero to 10 scale, with a zero indicating complete disagreement and 10 indicating complete agreement. A pictorial scale using “smiley faces” assisted the respondents in easily understanding the differences in the numbers of the scale and to encourage using numbers along the zero to 10 scale. The technique is simple to use and does not require respondents to make complex judgements about the statements, only how much they agree or disagree with each.

To confirm content validity, the draft survey was reviewed by a nephrologist and other professionals who work with dialysis patients. The instrument was pilot tested with 10 patients and modifications were made to ensure all items were distinct, understandable, and appropriate before full administration.

Descriptive statistics of the sample were done with SPSS v. 23 (IBM Corp, 2015). Perceptual mapping was used to support an understanding and visualization of the elements that facilitate and impede LDKT decision making and to assess how dialysis patients view the process of asking a potential donor for a kidney by their self-reported health status. This technique is widely applied in advertising and marketing and has been used by the authors to assess various public health decisions (Bass et al., 2012; Bass et al., 2016a; Bass et al., 2016b; Bass et al., 2016c; Bass et al., 2018a; Bass et al., 2018b).

Perceptual mapping was used to support an understanding and visualization of the elements that affect LDKT decision making among the three groups. The resulting maps produce a three-dimensional graphic display of how respondents perceive relationships among the items in each statement block. A multi-dimensional scaling software program created by the first author and based on the Galileo system as described by Woelfel and Fink (1980) converts the scaled judgments (i.e., zero to 10 scale on statements) into distances used in the mapping (Bass et al., 2018). Kruskal procedure forms the basis for the mathematical steps behind MDS, which uses the minimization of a cost function called “stress”, a measure of lack of fit between dissimilarities and distances (Buja et al., 2008). Stress is a residual sum of squares, where the outer square root is used to give greater spread to small values (Kruskal, 1964). To prepare data for input into the software, inter-item correlations of all elements are converted to a 0–10 scale base and “reflected” so that more important elements appear closer to the “self,” while those judged less important are farther away (Bass et al., 2016). The perceptual maps are then constructed with each element placed in the three-dimensional (mathematically n-dimensional) space based on its distance from (association with) the other concepts and from “Self.” In the maps, the “Self” variable is the aggregate of participants from that segment (i.e., self-perceived health status). The ability to construct and analyze maps for segmented representative subgroups is critical for extracting information needed for potential tailoring or targeting of messages in interventions.

The program then makes these associations and integrates them into a visual representation of the data, rather than into the usual statistical tables presented in survey studies. The maps thus provide a visual summary of the participants’ conceptualization of the situation, identifying the relative significance of various risks and benefits influencing the LDKT decision. This scaling method has been validated using physical space domain; if distances between American cities are entered into the program, a map that shows the cities in proper relative positions to each other is constructed with very little error (SSTRESS = 0.003) (Shiffman et al., 1981). Methodological details about the techniques used in this study are available at the first author’s website (Bass, 2021).

In-person participants were approached in the hemodialysis unit during their hemodialysis treatment. Informed consent was obtained in the treatment area and participants were given the option to take the survey themselves or have it administered to them by research staff. If opting for self-administration, the participant was given a clipboard, pen and paper survey and research staff were available to answer any questions. If opting for staff administration, research staff sat with the patient and verbally asked questions and entered responses on a paper copy of the survey. Online participants self-administered the survey in a location of their choosing with their own device. By clicking the Qualtrics survey link, online participants were prompted to read a description of the research containing required elements of consent; informed consent was indicated by proceeding to and completing the survey. No incentives were offered for participation.

The full sample (n = 160) was split between online (n = 126) and in-person (n = 34) participants. Sixty one percent of participants were female, with a mean age of 51 years. Sixty three percent had some post-secondary education or less (e.g., associate degree). The largest racial group represented was White (65%), following by African American/Black (24%); 7% identified as “other” or chose not to answer. Ninety-one percent identified as non-Hispanic/Latino. Thirty nine percent of participants had multiple health insurance types (e.g., Medicare and Medicaid), 24% had received a kidney transplant in the past but were currently on dialysis, and on average participants had been on dialysis for 6 years. Sixty-four percent indicated they had undergone evaluation for kidney transplant and 47% noted they were on a waiting list for a deceased donor kidney. Seventy percent expressed interest in receiving a live donor kidney transplant, 17% were not interested, 12% were unsure and 1% was missing. Twenty-nine percent considered their health to be at a poor or fair level (Table 2). A cross tab of health status by interest in LDKT indicated interest in LDKT was evenly distributed (χ 2.23; p = 0.321; not shown).

Figures 1–3 are the perceptual maps for the first four statement blocks. Block five is not presented because there were no specific differences seen. The group “Self” variable is shown as a star. This variable represents all the participants’ responses in that group. Green boxes represent specific variables from the statement blocks that are closest to “Self”. These items are those most important to the group. Red boxes indicate items farther away from “Self” and thus not considered as important. Each map visually represents how respondents in each self-reported health status group relate to perceived risks and benefits of LDKT, as well as how participants perceive the variables related to one another.

Self-reported health status was defined as excellent or very good health (“excellent”), good health (“good”), and fair or poor health (“poor”). Across the three groups in the concerns about asking for a LDKT, “Self” is closest to feeling awkward approaching someone about a kidney. However, based on the positioning of “Self” and the “awkward” item, those with the best health more closely identify with feeling awkward about making an approach. This is also the only item from the block that is close to “Self” for those with excellent health. For those with poor health, on the other hand, “Self” is positioned more closely with issues of “being afraid that the person they speak to will say no”. They are also closer to the variable of “don’t know what words to use” (Figure 1).

When considering factors related to concerns about the donor, maps of those with poor health show “Self” and factors related to concern about the donor’s family much closer together than on maps of those with better self-reported health. Concerns about the donor’s family include worries that the donor would not be able to care for their family and that the donor would not be able to donate a kidney to a child or family member. Among healthier participants, these worries are not as close to “Self”. Another notable difference between groups is that while those with poor health relate equally to worry about the ability to care for their family and worry about the ability to make a future donation to a child or family member, those with better self-reported health more strongly identify with the concern of being indebted to the person who is donating (Figure 2).

Figure 3 illustrates benefits to LDKT across the groups. Those with self-reported excellent health are not close to any benefit variable in the map. Those with self-reported good health are closest to the concept of “won’t have to wait as long” for a transplant. Those with self-reported poor health, however, note two different concepts—that the kidney “will last longer” and the LDKT will give them a better quality of life. These variables are not close in the other two groups.

When considering barriers to LDKT (Figure 4), “Self” is positioned closest to the risk of ending up back on dialysis after transplant for all self-reported health status groups. This distance is shortest among those with the worst perceived health. Although not closely positioned to “Self” among participants in any health status, it is notable that worries about not surviving surgery and fear of pain from surgery are concepts that participants identify as conceptually related to one another. The strength of this grouping of risk concepts is strongest among those with the best perceived health and weakens as perceived health status decreases.

Our findings should be considered in light of some limitations. Our study was subject to selection bias, as those who chose to participate may not be representative of the target population, which could result in the misidentification of influential factors. This study was unfunded and the sample, by necessity, was one of convenience. Our sample primarily consisted of African American and White patients, while the burden of ESKD lies within African American and Hispanic communities [United States Renal Data System (USRDS, 2019)]. Although this lowers the generalizability of these findings, this study represents an initial attempt to visualize and segment cognitions about LDKT. Future research using these methods should attempt to secure a more diverse sample. The majority of respondents completed the survey online and we identified some demographic differences in this group. However, no significant differences in the maps were found between those groups, indicating similar response patterns across the groups. Approximately half of the sample reported being on the deceased donor transplant waiting list an average of 6 years, slightly higher than the median of 4.5 years (USRDS, 2021). Some may also have been ineligible for transplant; 11% reported their doctor had told them they could not get a transplant. In addition, we did not ask whether the respondent was on hemodialysis or peritoneal dialysis or both. While these issues may have affected responses, it is important to identify patients’ barriers to transplant and the use of perceived health status allowed for interesting comparisons across groups. Finally, the sample did include those who had previously had a kidney transplant, including some who had had a LDKT. These respondents may have answered items differently based on their personal experience with transplantation. However, all respondents were currently on dialysis and had significant negative health outcomes due to ESKD.