Dialysis facility staff perceptions of racial, gender, and age disparities in access to renal transplantation

Kidney transplantation (KT) can improve the quality of life for end-stage renal disease (ESRD) patients; [1] however, not all ESRD patients have equal access to transplant [2]. Past studies have indicated gaps in all stages of the transplant process, where racial/ethnic minorities (vs. whites) [3] and females (vs. males) are less likely to access several of the required steps necessary to receive a kidney transplant [4‐7]. Evidence also indicates lower likelihood of waitlisting and receiving a deceased or living donor kidney transplant for elderly patients [4, 5, 7, 8]. The new kidney allocation system (KAS), effective as of December 2014, was developed in part to address racial transplant disparities [9, 10]. One of the primary aims of the KAS was to create a more equitable donor system in order to increase deceased donor kidney transplantation and expand access for candidates who have been historically disadvantaged, such as racial minorities [7, 11, 12]. Early results indicate that the KAS is meeting its intended goals of improving access for disadvantaged groups, specifically racial minorities [9]. Nevertheless, there is still room for improvement, especially in increasing access to the steps leading up to kidney transplantation including a) referral from a dialysis facility to the kidney transplant center for medical evaluation, b) starting and completing the required medical and psychosocial evaluation at a transplant center, and c) placement on the national transplant waiting list. [2, 3, 12‐14]

Studies have suggested that provider biases (often implicit), limited health disparity knowledge, poor communication, incongruent and culturally incompetent care, and the inability to provide culturally relevant care, are associated with provider contributors to disparities [15‐19]. However, few studies have examined the role of healthcare staff on transplantation disparities. Prior research has shown that dialysis staff have the ability to influence patient’s decision making and health behaviors such as completion of advanced directives and adhering to fluid and glycemic control recommendations [20‐24]. Moreover, their close and frequent proximity to dialysis patients makes them privy to patients’ needs, allows occasions to advocate on patients’ behalf, and leaves opportunities to shape patients’ medical decision making [22, 23]. Thus, it is likely that the dialysis staff’s knowledge and beliefs regarding transplant access can influence dialysis patients’ decisions about moving ahead with the transplant process. The purpose of this study was to examine dialysis staff perceptions of disparities in renal transplantation. Insights garnered from this study could inform the development of dialysis facility-based efforts to identify and address dialysis staff misperceptions regarding kidney transplant disparities.

Among the 586 dialysis facilities that were contacted and asked to participate, 545 staff members in 509 facilities responded to the survey, yielding an 86.9% facility-level response rate. Most respondents were nurse managers (51%) and social workers (21.8%). The remaining respondents primarily held administrative roles such as facility directors (12.6%) and clinical managers (5.1%). The majority of responding dialysis facilities served a primarily African American (AA) patient population (60.6%), with 43 being the median number of patients that each facility treated [15, 41, 42]. These statistics along with other selected characteristics are described in Table 1.

There were 905 total comments made regarding contributors for AA disparities, 842 total comments provided for elderly disparities, and 516 total comments made for female disparities. The gaps in these numbers indicate that staff listed more unique contributing factors for AA disparities and elderly patients than they did for female patients.

Our study explored Southeastern US dialysis facility staff perspectives on the primary contributors to disparities in kidney transplant access. Additionally, the study highlights a few issues that are central to efforts in improving access for vulnerable groups, specifically AA, older, or female ESRD patients. The responses provided by facility staff offer insight into the barriers, complexities, and challenges that both patients and staff face in dealing with ESRD and kidney transplant access.

Two very broad discussions emerge from the themes. The first discussion concerns patient resources. ESRD patient needs often extend beyond traditional medical care such as need for increased social support and transportation. A large proportion of staff highlighted that financial challenges, low social support, lack of education, and limited transportation were major contributors to AA disparities. Furthermore, comorbidities, age, and finances were stressed as the primary contributors for elderly disparities. Financial issues and lack of social support were also cited as main contributors for gender disparities. More work needs to be done in this Network to see if staff members are translating their perceived knowledge regarding transplant disparities into adequate methods to reduce these patient level barriers.

Developing strong community relations is one method to help alleviate health care challenges [45]. Dialysis facilities should consider building relationships with local non-profits, churches, patient advocacy groups, and community clinics due to the tremendous benefit it can have for patients and health delivery. In previous studies, the incorporation of community health workers into the healthcare team led to improvements in diabetes self-management among patients in rural areas [46] and overcoming barriers to medication adherence for hypertension in underserved and diverse patient populations [47]. Moreover, community partners in the non-profit Southeastern Kidney Transplant Coalition organization worked together to develop a multicomponent intervention in Georgia dialysis facilities to reduce racial disparities in referrals for kidney transplant evaluation [48]. A key component in the reduction of KT health disparities are gradual steps toward patient-centered care where the healthcare needs are community-based, personalized, collaborative, and assimilated to the patient [49]. For example, if travel is an issue for patients, do facilities have strategies in place that could help reduce this hurdle for their patients? Also, do dialysis facilities adequately discuss the requirements of KT with their patients and are the providers themselves educated about the KT process? Several of the comments suggested that limited time is devoted to patient education and some respondents felt as if the nephrologists themselves had limited knowledge on the transplant requirements, specifically for older adults. Additionally, recent published literature regarding transplant education has commented on the lack of tailored education [50‐54]. If inadequate patient education is a contributor to disparities, one suggestion to remedy this is engaging patients in a peer network support system which has been shown to increase patient education by acting as informational sources [55]. Another effective avenue to improving patient education could be the inclusion of community health workers and/or transplant outreach coordinators whose primary responsibility is to meet patients at dialysis facilities in order to provide answers to transplant related questions. Many of the comments regarding elderly disparities, as well as AA and female disparities, detailed the transplant process being too lengthy, complex, and intimidating for many patients. Community health workers and transplant outreach coordinators can work as adjuncts to health care staff to assist patients with navigating the healthcare system [56]. In summary, if staff perceive and observe patient obstacles in accessing transplantation, more work needs to be devoted to creating partnerships and seeking out community resources that can benefit the patient population they serve and overcoming the reported barriers.

The second discussion that emerges is one of staff bias and limited recognition of disparities. Only a small minority of staff reported on potential biases and discrimination that can work in conjunction with other contributors to disparities. Overall, the majority of staff comments assigned responsibility to the patient (80%) rather than identifying healthcare biases, both individual and institutional, that can exist in the process of accessing a kidney transplant. In fact, a few of the comments mirrored common stereotypes and could be perceived as brash. For example, one staff member stated that “laziness” among AAs was a primary contributor for racial disparities. Undoubtedly, more staff education is needed to discuss ways provider and staff biases can influence patient care and outcomes, and how to overcome these biases [57‐60].

Aside from culturally competent and congruent education, more is needed to educate providers on the existence and importance of KT disparities, in general. A primary finding was the lack of knowledge regarding ethnic and female disparities. Clearly, greater awareness and recognition of transplant disparities is required if inequities are to be reduced. A large percentage of staff were not consciously aware, had no suggestions of what contributed to disparities, or completely disagreed that gender transplantation disparities existed. Nearly 5% of staff also denied that racial transplant disparities existed. The denial, low awareness, limited recognition, and lack of suggested contributors, particularly for female and racial disparities, strongly indicates that increased education is necessary to inform staff about gender, racial, and age disparities in kidney transplantation.

In summary, our study details dialysis staff perceptions of barriers to kidney transplantation for AA, elderly, and female patients with ESRD. Top staff perceived contributors to disparities in KT access include low socioeconomic status, elderly patients’ beliefs about their age, and lack of experience in dealing with gender transplantation gaps, respectively. Specifically, the majority of staff was unaware and/or failed to acknowledge disparities between male and female ESRD patients. These findings suggest that dialysis facilities should educate staff on existing renal transplantation disparities, particularly gender disparities and collaboratively work with transplant facilities to develop strategies to actively address patient barriers, especially those that are modifiable. Future directions of research should continue to focus on barrier reducing interventions and quality improvement programs in order to reduce these disparities [25, 38, 61‐68]. Also, more work is needed to determine how staff perceptions compare with the self-described barriers of patients to transplantation.