Early Steps of the Kidney Transplant Process: What are the Experiences of Dialysis Social Workers?

Abstract

INTRODUCTION:

Dialysis social workers (DSWs) educate and advocate for end-stage kidney disease (ESKD) patients during the kidney transplantation (KT) process. However, little is known about the barriers DSWs face as they help patients get waitlisted and how to best support their efforts. We interviewed DSWs across New York (NY) State to examine their experiences, supports, and challenges in helping dialysis patients progress through KT education, referral, and evaluation.

METHODS:

We conducted semi-structured interviews with DSWs in NY State who had participated or expressed interest in a program designed to educate DSWs about KT and used rapid qualitative analysis to identify themes.

FINDINGS:

We interviewed 17 DSWs. Seven themes emerged: (1) DSWs report involvement in KT interest assessment, education, referral, and evaluation support, (2) DSWs report varying nephrologist support in helping patients progress to KT, (3) DSWs perceive social support and adherence as key factors in KT centers’ eligibility determinations, (4) DSWs have knowledge gaps around living donation and appreciate learning about KT from transplant centers and non-profit organizations, (5) Patients express KT concerns and DSWs counsel them about these concerns, (6) DSWs report solutions to help patients complete KT evaluation appointments, and (7) DSWs report communication deficiencies between dialysis centers and transplant centers, and patients.

CONCLUSIONS:

Education for DSWs, support from nephrologists, and resources to help patients complete KT evaluation steps facilitated DSW engagement throughout the pre-transplant process, underscoring the need for multi-level, cross-disciplinary programs to support these efforts.

INTRODUCTION

Kidney transplantation (KT) is the gold standard treatment for end-stage kidney disease (ESKD) as it doubles life expectancy,¹ improves quality of life,^2–4 and reduces societal costs compared to maintenance dialysis.^5,6 However, only a fraction of dialysis patients are referred for KT⁷ and disparities by gender, age, sex, geography, race/ethnicity, and socioeconomic status exist in access to KT referral, evaluation, and waitlisting.^7–13 In order to address these persistent inequities, we must understand what prevents patients from completing the steps of the KT process which precede waitlisting.^14,15

Disparities in access to KT have been associated with limited or lack of KT education for patients.^16,17 One of the first places where ESKD patients are introduced to the opportunity for KT is at dialysis centers, and dialysis social workers (DSWs) are typically the primary KT educators in this setting. ^18,19 However, dialysis center staff have previously reported limited knowledge and time needed to adequately educate patients about KT.^20,21 Additionally, DSWs maintain consistent contact with patients throughout their dialysis treatments, are oftentimes advocates for patients as they navigate their care journey, and are well-suited to speak to challenges associated getting dialysis patients waitlisted for KT.²² Furthermore, little is known about the roles that DSWs play in the KT process outside of patient education or barriers that they face in facilitating KT referrals and evaluations.^8,10 Assessing how to support DSW’s efforts to get ESKD patients waitlisted is critical to improving KT rates and addressing disparities in KT referral, evaluation, and waitlisting.

New York (NY) state is the fourth most populated state in the United States with 330 Medicare-certified dialysis facilities, 14 transplant centers, 1000+ nephrologists, and ~31,000 dialysis patients.^23–25 Support mechanisms for DSW’s serving these patients across NY state are not standardized, and their perceptions on the steps of the KT process that precede waitlisting are largely unstudied. The current study examines experiences of DSWs in NY state around the early steps of the KT process, as well as their perceptions on barriers and facilitators to helping dialysis patients get waitlisted.

METHODS

Study Design

We used a cross-sectional study design and a phenomenological approach to explore DSWs’ experiences, supports, and challenges in helping patients progress to KT.²⁶ We used the Consolidated Criteria for Reporting Qualitative Research for comprehensive reporting of our study design (Supp File 1).²⁷

Setting

The study was conducted at NYU Langone Health in New York, NY. Researchers partnered with the New York Center for Kidney Transplantation (a.k.a, “NYKidney”) for participant recruitment. NYKidney is a nonprofit organization focused on enhancing equity in kidney transplantation in NY State through evidence-based educational interventions for dialysis providers and patients and patient champion advocacy programs that help candidates find living donors.²⁸ The NYU Langone Health Institutional Review Board approved this exempt research study (IRB study #i23–00850).

Participants and Recruitment

We used convenience sampling to recruit DSWs in NY State who had participated in an NYKidney educational program at any time from January 2019 – March 2024 or who had expressed interest in participating. The NYKidney leaders (CL, KR) and associated physicians (LKK, SEL) emailed recruitment letters to 159 eligible potential participants. Interested individuals emailed the NYU Langone Health interviewer (MCD) to schedule an interview. Voluntary snowball sampling supplemented recruitment. All participants provided verbal informed consent before starting the interview.

Data Collection

We conducted semi-structured interviews from August 2023 – March 2024 to assess DSW’s experiences, supports, and challenges in the KT process. Interviews were conducted on Webex by a male data analyst (MCD) with a bachelor’s degree and three years of experience conducting qualitative research. The interviewer had no pre-established relationships with participants and no personal assumptions to report. Participants had no knowledge about the interviewer or their background.

The interview guide was iteratively developed by the research team and was guided by an expert in qualitative research design and transplant research (MLL). The interview guide included 17 open-ended questions about DSWs’ training, education practices, challenges in helping patients navigate the KT process, perceived support from other healthcare providers, and experiences with NYKidney’s educational initiatives (Supp File 2). Demographic questions included self-reports of race/ethnicity, gender, number of years working as a DSW in NY State, and the ZIP code(s) of their dialysis centers. DSWs were also asked the approximate percentage of patients who were on Medicaid and the percentage of patients who were African American or Black to assess the estimated prevalence of underserved populations who experience disproportionally lower access to transplantation.^16,29,30

Interviews lasted an average of 31 minutes (range: 21– 42) and were audio-recorded and auto-transcribed verbatim by Webex. The interviewer wrote post-interview memos to document important thematic findings. No repeat interviews were carried out. Participants received a $50 e-gift card after completing the interview.

Analytic Strategy

We used rapid qualitative analysis to inform an evolving intervention proposal targeting DSWs as agents for improving dialysis patients’ KT access.^31,32 The interviewer (MCD) and a second analyst (KK) summarized interviews via standard templates followed by matrix analysis using Excel.³³ The interviewer constructed a template of deductively derived neutral domains corresponding to the interview questions. The interviewer and a second data analyst used the template to summarize n=2 transcripts and finalized the template through discussion. Summarizing involved paraphrasing interview responses and referencing direct phrases and block quotations to illustrate themes. The interviewer then completed templates for all interviews, and the second analyst reviewed templates against transcripts. Templates were combined into a domain matrix to identify emerging themes across interviews and within neutral domains. The interviewer used the domain matrix to write thematic summaries and finalized them with the second analyst via two rounds of review and discussion. Themes were discussed with the entire study team for feedback when n=9, n=15, and n=17 interviews had been completed.

Statement on rigor

We report on the appropriateness and rigor of rapid qualitative analysis using guidelines from other literature.^34,35 Concurrent data collection and analysis enabled the interviewer to provide analytic updates to the multidisciplinary study team (i.e., nephrologists, KT educators, KT researchers, implementation scientists) and to receive feedback at several timepoints (i.e., at n=9, n=15, and n=17 interviews). At n=15 interviews, the interviewer reported having reached code saturation at which the potential data analysis categories “stabilized”. He continued to interview two additional DSWs who had already expressed interest in participating to achieve greater meaning saturation or richness of the description of these categories.³⁶

The credibility of our results was strengthened through the sampling of DSWs with experience in educating dialysis patients about KT who were equipped to speak to the challenges associated with the KT process. We followed a standard rapid analysis methodology³³ using verbatim transcripts, direct quotations, and researcher triangulation to increase validity. The interviewer/primary analyst attended weekly meetings with community nephrologists, transplant educators, and transplant researchers on the study team to gain insight into the local health system context. Reliability was enhanced through post-interview memoing, concurrent data collection and analysis, constant comparison of analysis categories after successive interviews, and reporting of deviant cases.³⁷ The transferability of the results was enhanced by recruiting DSWs from different dialysis companies across different geographic regions in NY State.

RESULTS

Social Worker & Dialysis Clinic Demographics

Nineteen of the 159 eligible DSWs expressed interest in participating. Seventeen DSWs consented to participate and completed interviews. Most were women (65%) and White (65%), with a median of 7 years (3.5–15 years) experience working as a DSW in NY State. DSWs estimated a median of 55% (30–75%) of their patients were Medicaid recipients and 40% (20–50%) of their patients were African American or Black. DSWs represented dialysis clinics across 17 different ZIP codes in NY state. Dialysis clinics served patients who spoke English (100%), Spanish (94%), and other languages. (Table 1)

Table 1.

Dialysis Social Worker and Center Demographic Characteristics

Characteristics	N (%)
Total participants	17 (100)
Gender of dialysis social worker (DSW)
Woman	11 (65)
Man	2 (12)
Not reported †	4 (24)
Race/ethnicity of DSW
White	11 (65)
African American/Black	2 (12)
Asian	2 (12)
Hispanic/Latino	1 (6)
Prefer not to say	1 (6)
Years of experience as a DSW in New York (NY) state
Median (IQR)	7 (3.5–15) years
1–5 years	6 (35)
6–10 years	3 (18)
11–15 years	4 (24)
16–20 years	1 (6)
21–25 years	1 (6)
>25 years	2 (12)
Approximated % of patients on Medicaid ‡
Median (IQR)	55% (30–75%)
0–20%	3 (18)
21–40%	3 (18)
41–60%	5 (29)
61–80%	3 (18)
81–100%	3 (18)
Approximated % of patients who are African American or Black ‡
Median (IQR)	40% (20–50%)
0–20%	5 (29)
21–40%	4 (24)
41–60%	6 (35)
61–80%	0 (0)
81–100%	2 (12)
Geographical region
Western NY	8 (47)
Long Island	4 (24)
New York City	3 (18)
Other	2 (12)
Languages spoken by dialysis patients served by dialysis social workers in the sample ‡
English	17 (100)
Spanish	16 (94)
Bangla	4 (24)
Creole	3 (18)
Arabic	2 (12)
Chinese	2 (12)
Hindi	2 (12)
Vietnamese	2 (12)
Dari	1 (6)
German	1 (6)
Greek	1 (6)
Laotian	1 (6)
Polish	1 (6)
Punjabi	1 (6)
Urdu	1 (6)

^†The first thirteen participants were asked their gender by email after the interview because a gender question was not included in the initial interview guide. N=4 participants did not reply to this email and thus did not report gender.

^‡These variables were approximated by DSWs and DSWs were permitted to list more than 1 language.

Qualitative Themes

Seven themes emerged: (1) DSWs report involvement in KT interest assessment, education, referral, and evaluation support, (2) DSWs report varying nephrologist support in helping patients progress to KT, (3) DSWs perceive social support and adherence as key factors in KT centers’ eligibility determinations, (4) DSWs have knowledge gaps around living donation and appreciate learning about KT from transplant centers and non-profit organizations, (5) Patients express KT concerns and DSWs counsel them about these concerns, (6) DSWs report solutions to help patients complete KT evaluation appointments, and (7) DSWs report communication deficiencies between dialysis centers and transplant centers, and patients. Exemplary quotations for each theme are presented in Table 2.

Table 2.

Illustrative Quotations by Theme

Theme	Illustrative Quotation
Theme 1: Dialysis social workers (DSWs) report involvement in kidney transplant (KT) interest assessment, education, referral, and evaluation support	“As a social worker, I’m responsible for educating the patients about transplant. I’m responsible for making the referral. I’m responsible for keeping up with their evaluation process. Contacting the transplant center to make sure that folks are making their appointments that they’re keeping their appointments that they have scheduled appointments. And if they’re having a problem scheduling appointments. I also report that to the transplant center. I also have to document their waitlist status and document any appointments or barriers to appointments that they might be having and then, of course, the transplant assessment quarterly.” [DSW005] “To educate, to make the referral, to follow up with the patient in the transplant center during evaluation to make sure the testing is done.” [DSW015]
Theme 2: DSWs report varying nephrologist support in helping patients progress to KT	“Sometimes some of the nephrologists or nurse practitioners are like, ‘Well I don’t think this person meets criteria.’ And then we’ll say, like ‘No, you should do it anyway. We should still refer them. Let’s see what the transplant center says.’ So that we all kind of—a lot of us in my area, we kind of give the push back to the doctors that we’re going to make the referral anyway.” [DSW011] “I can think of some patients who, like, on the outside, they may not look like they’re going to be the best transplant candidate or may have some medical complexity that the nephrologist thinks could be a barrier, but instead of letting them try, they just automatically say, ‘oh, well, he wouldn’t be a candidate or she wouldn’t be a candidate for transplant. Don’t put...in the referral.’ So, it’s a little for me, it’s a little frustrating when I do that but I, I usually try to refer whoever, I let the transplant center decide who is eligible and who’s not.” [DSW017]
Theme 3: DSWs perceive social support and adherence as key factors in KT centers’ eligibility determinations	“Their social support is huge. It’s absolutely huge. As a matter of fact, most of the dialysis unit, or most of the transplant units will not even accept people if they don’t have solid supports. It varies in terms of the number and what the supports are based on-- what the capabilities of the patient are. So, if you have a patient who may not be really good with medications, and they don’t have somebody who is gonna be willing to help them with medications, then they may not be appropriate and they may get denied by the facility. But if you have somebody who maybe is not the best candidate because they are not the most independent, but they have great support, they may actually be a better candidate. And very often when it comes to transplants, the transplant centers will say if you have a live donor, even if you’re not the best candidate, we will transplant you.” [DSW010] “I understand that they need to know that the patient is compliant because it reflects how well they’ll take care of their kidney. But I don’t think that’s always the case. So when the clinics call us as social workers and ask for factual kind of numbers on the patient’s compliance, I’m sometimes hesitant to do that because that doesn’t to me necessarily reflect how well they would take care of a future kidney. For some, it absolutely does. But there’s so much gray area there. So that is sometimes frustrating when we’re trying to advocate for the patient.” [DSW012]
Theme 4: DSWs have knowledge gaps around living donation and appreciate learning about KT from transplant centers and non-profit organizations	“[If] the person who’s responsible for transplant at the clinic is not educated properly, it’s going to deter patients from doing transplant, because questions are not going to be answered thoroughly. There’s going to be a gap in coverage. So I think that’s really the biggest thing is just more education to dialysis social workers across the board on transplant living donation...so we can present different information to the patients accurately for them to make a decision on their own. “ [DSW017] “It feels like at times the responsibility is solely left to the social worker to educate the patients on this process. And I think a lot of the aspects of the process are beyond the scope of my practice or something that I was not trained to educate them about.” [DSW007]
Theme 5: Patient express KT concerns and DSWs counsel them about these concerns	“If the reason is, I’m too old...I would say, well, you know, if you’re interested, you... have the right to do that ... You know, you can try...to get listed...Because it’s not our choice or your doctors’ ...it’s, what the transplant center thinks.” [DSW002]” “I validate their fear, you know, like it’s a major surgery. But then I tell them that any kind of kidney... is better at any given time than being on dialysis, and there will be less kind of full restrictions, almost nothing fluid, fluid restriction. You know, you can travel. So I try to tell them the positive side of it more.” [DSW001]
Theme 6: DSWs report solutions to help patients complete KT evaluation appointments	“So for colonoscopy, it’s, it was really just kind of communicating with, like, our nurse practitioner here, or a medical director who can sometimes figure out what might...the holdup be and...sometimes use their connections to try to get people in sooner if possible. Also just encouraging people to go on, like a cancellation list, of course, to get a sooner appointment if something becomes available. And then for dental I have a listing of dentists that accept Medicaid or work on a sliding scale. So, I often give that to patients to try to find a provider that they can afford.” [DSW013] “[Transplant centers] do kind of a telehealth and the next time…they’re there for one day, like, the whole day, and they get all the other screenings done the same day. They might get some lab work and X-ray, and talk to somebody for nutrition and somebody for mental health and, you know, nephrologist for all the different teams and everything, they do it all one day. It’s back-to-back-to-back in the different-- They’ve done that since COVID happened, and that’s been really nice for the patients that live farther away.” [DSW011]
Theme 7: DSWs report communication deficiencies between dialysis centers and transplant centers, and patients	“I think, a more reliable communication, like, some of the transplanters send out eligibility things monthly and-- which is helpful for us to keep track of our patients as they go through appointments and things. But having-- keeping us updated on what the patients are needing through either a portal that we could access or an email that is updated or even a Google-- secured Google Doc would be really helpful for us to keep track of the patients ourselves so that we’re not constantly having to reach out, clog up the lines to talk to transplant coordinators for each individual patient. If we could have a working something to keep track of where they are in their work up, that would make things a lot easier for us to help our patients be more successful to understand where they are in the workup.” [DSW014] “So ideally if our systems were interconnected somehow, and we could see the information that they see. I don’t know how realistic that is, but it does seem like we’re trying to play catch up on—updates on our end. And sometimes the patients don’t know where they stand. And so, of course, we encourage them to call their coordinator and touch base, that is part of their responsibility. But I do think there’s a little bit of a communication gap.”[DSW012]

(1). DSWs report involvement in KT interest assessment, education, referral, and evaluation support

Interest Assessment:

Most DSWs reported that they assessed patients’ KT interest at dialysis initiation, and reassessed interest at regular timepoints (e.g., required 30-day and quarterly assessments, annual care plan meetings). DSWs perceived that some patients were too “overwhelmed” (DSW006) to consider KT at dialysis initiation, had fears or concerns about KT, or were reluctant to receive information about KT.

Patient Education:

DSWs reported using various modalities to educate patients about KT: printed materials (i.e., from their dialysis company, through the End Stage Renal Disease Network, or transplant centers) with facts about KT, eligibility criteria, and lists of transplant centers; videos; websites hosted by the National Kidney Foundation and a local transplant center; dialysis clinic lobby days and wellness fairs involving transplant center liaisons, health services, and peer mentors (i.e., transplant recipients or candidates); and educational posters. One DSW suggested that patients preferred face-to-face education discussions. Another DSW emphasized the importance of translated educational materials and translation services for non-English speaking patients. A third DSW believed patients needed more willingness to explore the existing educational materials. DSWs perceived peer mentors as helpful in encouraging dialysis patients to start the KT process or to search for a living donor.

KT Referral:

Most DSWs (n=14/17) described being involved in the KT referral process and many reported making referrals through fax or through an online portal. Fewer DSWs reported that they orally recommended patients to reach out to their transplant center of choice after discussing transplant center options.

Evaluation support:

Nearly all DSWs noted that they were involved in the KT evaluation process in some way. Examples of DSW involvement include: reminding patients to complete outstanding evaluation appointments; communicating with transplant centers to document and track evaluation appointment completions; helping patients access transportation services; and addressing patients’ evaluation appointment barriers. Some DSWs described these responsibilities as a “constant follow-up process” (DSW005) with patients who were “reliant” (DSW006) on the DSW to complete the evaluations.

(2). DSWs report varying levels of nephrologist support in helping patients progress to KT

DSWs had mixed perceptions of the support provided by nephrologists during the early steps of the KT process. Some perceived nephrologists as generally supportive, some noted that the level of support varied by nephrologist, and others reported that support from nephrologists was limited. DSWs reported that supportive nephrologists helped patients progress to KT by discussing KT with dialysis patients, encouraging dialysis adherence, and encouraging KT referral for potentially eligible candidates. Given nephrologists’ medical and kidney expertise, some DSWs desired more proactive engagement from nephrologists in KT education. Several DSWs reported that nephrologists “automatically discount[ed]” (DSW010) patients from referral or that they deemed patients ineligible for KT based on their own perceptions of eligibility (as opposed to referencing eligibility requirements used by transplant centers). Some DSWs pushed back against the nephrologists’ opinions and referred patients anyway to allow the transplant center to determine eligibility since criteria vary by transplant center (e.g., different age and body mass index (BMI) cutoffs). Two DSWs noted that not requiring a nephrologists’ signoff on KT referrals made the process faster. Some DSWs desired that nephrologists engage in more preemptive KT education, referral, and waitlisting, and that nephrologists be trained to do so.

(3). DSWs perceive social support and adherence as key factors in KT centers’ eligibility determinations

According to DSWs, transplant centers deemed patients ineligible for KT for reasons including old age, high BMI, cardiac issues, diabetes, cancer history, and unaccepted insurance. Some DSWs reported encouraging patients who questioned their eligibility, either because they were previously deemed eligible, or because they were seeking re-transplant at another transplant center with different criteria.

Several DSWs reported that transplant centers requested data on patients’ engagement with dialysis treatments. DSWs perceived that patient behaviors such as skipping or shortening dialysis treatments, missing a scheduled evaluation appointment, or having a poor diet as indicated by blood work would be a barrier to KT eligibility from the transplant centers’ perspectives. These DSWs reported advising patients to complete their dialysis treatments so that they could keep a “good standing record” (DSW001). Another DSW suggested that there was “so much gray area” (DSW012) for some patients in how dialysis treatment adherence might predict their post-transplant outcomes.

DSWs expressed that social support was “absolutely huge” (DSW010) for KT eligibility and that many patients lacked adequate social support. DSWs perceived patients’ family and friends as helpful for KT education (e.g., by facilitating patient comprehension and retention of information and by providing translation assistance), transportation, and completing evaluation and post-transplant appointments.

(4). DSWs have knowledge gaps around living donation and appreciate learning about KT from transplant centers and non-profit organizations

DSWs reported high confidence in their abilities to educate patients about KT, although some were less confident about educating patients about living donation compared to cadaveric donation. A couple of DSWs noted that they received limited training about KT through their dialysis organizations, which they mitigated through independent learning.

DSWs appreciated in-person trainings with transplant centers, which facilitated rapport-building and learning about center-specific eligibility requirements (e.g., different BMI cutoffs) and evaluation processes. Some DSWs found certain transplant topics difficult to explain, such as the average KT waitlist time, matching/allocation process, and the “scoring of the kidneys” using the Kidney Donor Profile Index (DSW004). Many DSWs directed patients with difficult questions to transplant center contacts or invited transplant center representatives to dialysis clinic lobby days to engage with patients. Several DSWs desired more training on living donation topics like donor inquiry to family and the public, health outcomes, the donor recovery process, financial resources for donors, and the living donation process.

Most DSWs in our sample had participated in NYKidney’s educational program. DSWs reported that they appreciated discussing case study examples with other healthcare professionals and learning about KT from transplant surgeons and transplant patient presenters. One participant shared that a session comparing the benefits of renal transplantation, in-center dialysis, and at-home dialysis was particularly interesting. Several DSWs noted that the programs could be improved by using less “medical jargon” (DSW004) and technical information. However, one DSW expressed that the information presented was “too basic” (DSW015) and needed new topics.

(5). Patients express KT concerns and DSWs counsel them about these concerns

DSWs noted that patients expressed concerns about KT including undergoing major surgery, being a candidate of older age, “taking” (DSW002) a kidney from a younger candidate, kidney failure, long evaluation processes, waitlist times, medication adherence issues, comorbidities, having a high BMI, religious concerns, approaching family members about living donation, and health risks of living donation. Some DSWs mentioned patients’ life circumstances (e.g., needing to secure food and housing) and mental health issues (e.g., anxiety and depression) may have inhibited them from pursuing KT. In response to fears about major surgery, some DSWs advised patients that KT would improve their quality of life (e.g., less fluid restriction, able to travel) and would keep them from needing dialysis. In response to older patients’ concerns about “taking” a kidney from a younger candidate, three DSWs told patients that older patients are given kidneys from “a separate type of list” (DSW003) or kidneys that “have more issues” (DSW002).

(6). DSWs report solutions to help patients complete KT evaluation appointments

DSWs recognized non-completion of specialist appointments (e.g. dental clearance, gastroenterology, colonoscopy), lack of transportation, and lack of insurance coverage as KT evaluation barriers. Lack of dental coverage to access dental clearance was a frequently cited evaluation barrier. DSWs noted that long wait times for specialist appointments became longer if the patient missed an appointment and had to reschedule. DSWs also perceived that not wanting to be “cleaned out” before undergoing a colonoscopy (DSW005) was a barrier to KT evaluation for some patients.

Two DSWs addressed these KT evaluation barriers by engaging a local dental clinic to accept Medicaid patients, identifying sliding scale options, partnering with a local dental school to provide treatment, and by advising patients to register for cancellation lists to be notified of recently available appointment slots. One DSW noted that their dialysis clinic’s lobby days involved connecting patients to local dental clinics, social services, insurance providers, and physical therapists. DSWs addressed transportation barriers by connecting eligible patients to Medicaid transportation services. Two DSWs recommended that patients schedule their evaluation appointments “back-to-back-to-back” (DSW011) in one medical center to overcome transportation and social support barriers.

(7). DSWs report communication deficiencies between dialysis centers, transplant centers, and patients

DSWs noted that the quality of communication between them and transplant centers varied by center. Many DSWs desired better and more timely communication with transplant centers to improve the KT process and to ensure tracking responsibilities did not fall solely on patients. One DSW expressed concerns about large time gaps between referral and evaluation process initiation (e.g., 3 months) noting that this could diminish patient motivation to pursue KT. Another DSW noted that they had to call the transplant center after a referral to prompt them to start the evaluation. Another DSW reported that their patient was inactivated from evaluation for missing an evaluation appointment and that the transplant center did not do anything to address the barrier that caused the missed appointment.

Several DSWs appreciated having regular contact with transplant centers through monthly emails with patients’ evaluation status updates and phone calls with transplant coordinators. One DSW suggested using a secure Google document or an app to share real-time updates between the DSW, transplant center, and patient. Another DSW reported using an app called TxAccess which enabled different providers to track referrals and evaluation appointments, but recognized that many transplant centers did not use this app.

DISCUSSION

In our interview study, DSWs described their roles in the early steps of the KT process (i.e., education, referral, and evaluation) and the multi-level (i.e., individual, provider, and system-level) factors that impacted their efforts. DSWs reported that the following helped them guide patients through the KT process: trainings with transplant centers on center-specific eligibility and evaluation processes; educational programs for DSWs (e.g., how to support patients as they search for a living donor); peer mentors; and evaluation appointment support services (e.g., sliding-scale payment options for specialists and transportation benefits for Medicaid patients). DSWs reported that the following made it harder for them to guide patients through the KT process: patients’ concerns about KT; DSW knowledge gaps around KT and living donation; eligibility barriers (e.g., dialysis treatment compliance); difficulties completing evaluation appointments; varied levels of nephrologist support; and lapses in communication between DSWs and transplant centers regarding patients’ evaluation statuses.

DSWs in our study generally reported high confidence in their KT education, yet some reported knowledge gaps on KT topics such as allocation and living donor inquiries. Prior studies have also found that dialysis staff (including DSWs, nurses, and dialysis technicians) felt uninformed about KT, had limited time for patient education, and had limited knowledge around factors associated with disparities in access to KT.^20,21 DSWs in our study identified local transplant centers’ in-person trainings as being helpful for education about center-specific processes and expressed the desire for more training about the KT process in general. Additionally, most DSWs in our study reported that they attended NYKidney’s educational classes, but participants had mixed opinions on the content presented. Trainings that inform DSWs about the importance of KT education for patients, living donation processes, and how to counsel patients to address concerns and eligibility barriers would help improve dialysis patients’ access to transplantation.^16,38

DSWs also reported that some nephrologists automatically discounted patients from referral based on their own perception of KT eligibility and that DSWs have had to push back against nephrologists to get patients waitlisted for KT.^17,30,39 Some expressed a desire for more proactive KT education from nephrologists. Early KT education affords patients more time to consider KT as a treatment option, address factors that might impact their eligibility (e.g., BMI), complete evaluation appointments, and find a living donor.⁴⁰ Discussing KT with different healthcare providers may be helpful for patients who are initially tentative to consider KT as a treatment option and having longer conversations about KT has been found to increase access to transplantation.^17,41

Limited provision of KT information has been associated with disparities in access to transplantation for women, Black or African American, and Medicaid-insured patients.¹⁶ DSWs in our study estimated that 55% of their patients were Medicaid-insured and that 40% of their patients were Black or African American, indicating the need for comprehensive and culturally sensitive KT education.⁴² DSWs also noted that financial barriers hindered patients from completing KT evaluation steps and that knowing about financial support resources for Medicaid-insured patients made it easier for them to facilitate patients’ evaluation completion.³⁹ Educational programs should empower DSWs to collaborate with nephrologists to educate dialysis patients and address systematic barriers that exacerbate existing disparities in KT access.^{15,16,30,39,43,44}

Patzer and colleagues developed and evaluated a multimodal KT education intervention for both dialysis providers and patients across 134 dialysis facilities in Georgia and found that the intervention led to improved KT referral rates and racial equity in KT referrals.⁴⁵ However, this intervention has only been implemented in the Southeastern United States, and its impact on longer-term outcomes such as waitlisting and transplantation has not yet been assessed.⁴⁵ Non-profit organizations, such as NYKidney, are resourced to convene extracurricular classes for dialysis staff training and patient education about KT and living donation. However, these types of programs are typically funded by individual transplant centers, making them difficult to implement equitably and consistently. Future research should leverage existing programing to develop and then assess educational interventions created to support DSWs in NY State. It is also critical to implement interventions with sustainable funding mechanisms that ensure comprehensive DSW education across all dialysis facilitates.

This qualitative research study should be understood in light of its limitations. Social desirability bias may have prevented DSWs from disclosing challenges they experienced during the KT process or knowledge gaps around KT and living donation.⁴⁶ We limited the potential impact of this bias by using a highly trained qualitative interviewer who emphasized the confidentiality of participants’ responses and remained neutral throughout the data collection process.⁴⁷ We do not currently have access to dialysis centers’ referral rates to examine how participants’ experiences relate to their centers’ KT referral rates. The percentages of DSWs’ patients on Medicaid and patients who are African American or Black were estimated and self-reported by DSWs and thus are prone to recall bias. We also did not collect information on DSW’s ages, thus limiting our ability to assess subgroup differences. We sampled largely from NYKidney’s distribution list, limited eligibility to DSWs with experience in KT education and were unable to recruit DSWs from all regions of NY State. This limits our ability to generalize findings to DSWs serving in the northern and central regions of NY State, especially those who have never participated in KT educational efforts with dialysis patients. Lastly, our results may be impacted by non-response and selection biases because our study had a low response rate and a sample consisting of highly motivated DSWs who had experience with or were interested in learning about KT. However, it was necessary to recruit DSWs who could speak to DSWs’ KT knowledge gaps and topics that would be helpful to cover in future educational programming, as educating dialysis patients about KT is an integral part of helping them get referred and evaluated for KT. Despite these limitations, our results are important because they shed light on the barriers to KT observed by DSWs, as well as DSWs’ recommendations for enhancing their role in addressing these barriers in NY State.

CONCLUSIONS

Our interview study with DSWs in NY State found that DSWs help fill knowledge, support, and care coordination gaps for patients as they progress through KT education, referral, and evaluation. Our results also indicate a need for multi-level cross-disciplinary programs designed to support DSWs’ efforts to get dialysis patients waitlisted for KT. Future interventions across NY state should address the barriers and leverage the supports reported by DSWs in this study.

Abbreviations

DSW

Dialysis social worker

ESKD

End-stage kidney disease

KT

Kidney transplantation

NY

New York

NYKidney

The New York Center for Kidney Transplantation

BMI

Body mass index

Data Availability Statement

Data supporting this study are included within the article and/or supporting materials.