Everybody needs a cheerleader to get a kidney transplant: a qualitative study of the patient barriers and facilitators to kidney transplantation in the Southeastern United States

This qualitative study allowed patients on dialysis in Georgia, North Carolina, and South Carolina to identify the barriers and facilitators to KTx that were most salient to them to inform further patient-centered research and help individuals in this region get a KTx. Although some of the findings from this study are similar to previous work, the participants in this study identified novel areas for interventions to promote or discourage KTx that can be useful in this region and beyond. This study is also unique in targeting patients in the Southeast, where KTx rates are the lowest in the nation, an essential first step in informing relevant interventions.

The current Centers for Medicaid and Medicare (CMS) Conditions for Coverage for End-Stage Renal Disease Facilities clearly mandate that all dialysis facilities should be providing patients with information and assistance related to KTx [32]. Our finding that 76 % of focus group participants who completed their demographic forms were interested in KTx, but only 34 % had been referred to a transplant center for evaluation, is consistent with previous research conducted after the 2008 implementation of the Conditions for Coverage that suggests that despite these regulations, many patients on dialysis (particularly underserved populations) in the United States are interested in getting a kidney transplant but lack necessary information about kidney transplantation and how to get a kidney transplant [1, 2, 6, 33–37]. This qualitative study may help elucidate why this is happening in some dialysis units.

This work also suggests that providers can improve their patient-centered delivery of care related to KTx assistance. As the emphasis on patient-centered care [38–40] and shared decision making [38, 41] increases in health delivery systems in ESRD and beyond, dialysis providers may find some of the suggestions from the patients in our study helpful in their own quality assurance performance initiative projects, and researchers can build upon these findings in future intervention research. For example, dialysis units can provide patients with repeated and meaningful information and assistance related to KTx, and make sure that patients understand the education they receive. Furthermore, they may want to encourage patients’ abilities to better self-manage [40] their ESRD care and KTx pursuit so that patients can be their “own quarterbacks” and advocate for themselves more effectively. The patients who participated in these focus groups made it clear that it is not enough for dialysis providers to simply give out information about KTx. Patients want meaningful and active assistance with the transplant process. It is also critical to address patients’ distrust of the transplant process in order to help the most underserved patients.

There are several limitations to the study findings. Inherently, focus groups are limited by small sample size, discussions can be difficult to control, participants may not contribute equally to the discussion and the group moderator may impact participant responses because of the way the questions are delivered. In our study, the sample size is intentionally small in order to explore in-depth individual feelings and beliefs. We controlled the group and participation of all group members by only allowing one person to speak at a time, directly encouraging all members to participate, and “calling on” different patients to contribute so that a few patients did not dominate the conversation. We also only used questions from our interview guide to insure that the moderators did not influence the patient responses. Despite the possible limitations of focus groups, there are also many advantages to this research methodology. Focus groups allow for an in-depth exploration of opinion that is not possible in quantitative research and may be more inclusive as participants do not have to have the literacy and numeracy skills necessary to complete surveys or other methods of data collection.

The Georgia focus group with 12 patients is slightly larger than the 6–10 participants recommended [21], however that group did have two facilitators directing the conversation and all patients had an opportunity to share their feelings about the interview questions. Because the groups were entirely anonymous and no patient names were revealed or used, it may be that group rapport was diminished however each group had robust discussions involving all attendees. This research was conducted with a convenience sample of patients in only three states; these participants might not be typical patients on dialysis, in that they were motivated to attend a patient education event and participate in the focus group. In addition, as only one focus group was conducted in these three states, the patients in this study may not be representative of all patients in their state. Therefore, as with any qualitative research, the findings have limited generalizability even within the three states where this research occurred.

However, this information may be particularly useful for the Southeastern region of the US, which has dialysis facilities with the lowest KTx rates in the nation and cares for the most underserved patients [42]. As this study was entirely anonymous and the investigators were not privy to the patient medical records, we have no way of knowing if the focus group patients would even be medically eligible and suitable for a KTx. Furthermore, our convenience sample was not exactly reflective of the demographic composition of Network 6 (e.g., in Network 6, 55 % prevalent patients are men and 67 % are African American. In this study 48 % of respondents who completed the survey were men and 86 % African American). However, we are encouraged that the findings are robust as they are congruent with previous quantitative research across the country and suggest that: (a) there is a sizeable portion of patients on dialysis who mistakenly believe that they are active on a KTx list, when in fact they are not [1, 33–37] and (b) that dialysis providers may not be effectively communicating with patients about KTx [33].

This study complements the growing body of international qualitative research with kidney disease and transplant patients, including studies that examine the development of patient education materials about KTx and other treatment options [43, 44]; issues related to living kidney donation [45, 46]; patient understanding of increased-risk donor kidneys [22, 47]; the experience of kidney transplant rejection [48]; donor-recipient relationships [49]; the kidney disease trajectory [23]; kidney disease research priorities [50] and kidney treatment options [13]. This is the first study to specifically explore the patient-identified facilitators and barriers to seeking a KTx in the Southeastern United States.

Patient perceived barriers and facilitators to KTx are just one attribute contributing to KTx rates, in addition to other patient factors (i.e. medical and financial eligibility) as well as dialysis facility, geographical, and transplant center factors. These focus groups provide insight that can inform larger scale studies. Accordingly, the Southeastern Kidney Transplant Coalition has surveyed all dialysis units in the Network about their KTx practices [51, 52] and continues to conceptualize KTx referral success as dependent on multiple factors.