RENAL REPLACEMENT KNOWLEDGE AND PREFERENCES FOR AFRICAN AMERICANS WITH CHRONIC KIDNEY DISEASE

SUMMARY

Background:

Renal replacement therapies (RRT) other than in-centre haemodialyses are underutilised by African Americans with end-stage renal disease (ESRD) even though they are associated with reduced costs, morbidity and mortality as well as improved quality of life for patients.

Objectives:

To understand African American patients’ knowledge of RRT options and how patient, provider and system-factors contribute to knowledge and preferences. Participants’ interviews were conducted at the University of Chicago Medical Center with African American patients with chronic kidney disease (CKD). The final analysis included 28 interviews; 22 patients had CKD not yet on dialysis or having received a transplant, while 6 had reached ESRD and were receiving treatment for kidney failure. Approach Transcripts were uploaded into NVivo8 for coding. Thematic analysis was used for data interpretation.

Results:

Four themes were identified: (1) limited knowledge of home modalities and deceased donor options, (2) CKD patients gave little thought to choosing RRT options, (3) CKD patients relied on doctors for treatment decisions, and (4) while patients reported knowledge of living kidney donation transplants (LKDT), it did not translate to receiving an LKDT.

Conclusion:

African Americans face significant knowledge and access barriers when deciding on their RRT treatment. Even patients with advanced CKD were still in the early stages of RRT selection. Understanding the knowledge gaps and barriers patients face will inform our subsequent intervention to educate and motivate patients to increase CKD self-care and improve communication between patients, their families and their providers about different RRT treatments.

INTRODUCTION

Renal replacement therapies (RRT), other than in-centre haemodialyses (IHD), have been shown to reduce costs, morbidity and mortality as well as improve quality of life for patients with end-stage renal disease (ESRD). In the United States, African American ESRD patients are less likely than their white counterparts to choose peritoneal dialysis (PD), home haemodialyses (HHD) and transplantation (Wallace et al. 2017; Saran et al. 2019), despite evidence that these RRT modalities are associated with improved clinical and patient-centred outcomes compared with IHD (Ozcan et al. 2015; Robinson et al. 2016; Neumann et al. 2018).

In addition, racial disparities in RRT modality selection between Afro-Caribbean and white patients in other areas of the world have been less explored. Evidence for disparities among other Afro-Caribbean populations is less well studied. In the United Kingdom, non-White British end-stage kidney disease patients have a similar likelihood of appearance on the transplant waitlist as their white counterparts; however, these patients have reduced access to renal transplant (Taylor et al. 2018). Afro-Caribbeans have similar PD rates as their white counterparts (Hole et al. 2018). Although most studies have not focused specifically on Afro-Caribbean population, prior work has found that ethnic minorities in Canada, Australia and England have reduced access to PD and transplant (Hemmelgarn et al. 2006; Akolekar, Forsythe, & Oniscu, 2013; Khanal et al. 2016; Mucsi et al. 2017; Khanal et al. 2018; Wilkinson et al. 2019).

Effective patient education might help African American patients with chronic kidney disease (CKD) make more informed decisions about their ESRD treatment. Research has shown that patients who are provided information about the benefits and costs of all types of RRT are more likely to choose modalities other than IHD (Lacson et al. 2011; Mollicone et al. 2013). Yet, despite having significantly higher rates of CKD than any other racial group, African Americans are less likely to be referred to a nephrologist prior to dialysis initiation (Prakash et al. 2013; Yan et al. 2013; Saran et al. 2019). Lack of pre-dialysis care and education is associated with African Americans’ lower likelihood of pre-emptive transplant, choosing PD, or having an arterio-venous fistula in place for HD (Prakash et al. 2013; Saran et al. 2019). Even when patients are educated about dialysis, it may not be complete or effective. Patients cite limited time for decision making due to urgent initiation of dialysis (Sheu et al. 2012). In addition, African Americans may be less likely to be offered transplant or PD due to provider mis-information or biased perceptions that patients are not interested or appropriate for these modalities. African Americans also experience less shared decision making across all domains—information sharing, provider recommendations and decision making (Finkelstein et al. 2008; Kucirka et al. 2012; Sheu et al. 2012). Moreover, many African American patients may not fully benefit from the RRT discussions as they face barriers to understanding such as mistrust, denial and low health literacy (Lissanu et al. 2019). Thus, we sought to better understand urban African American patients with advanced CKD and ESRD knowledge of RRT modalities and their experiences with RRT selection. We plan to use the information gathered to develop more effective educational materials and programmes for African American patients living with CKD.

METHODS

The study is reported according to the Consolidated criteria for Reporting Qualitative health research (COREQ) (Tong et al. 2007).

PATIENT RECRUITMENT

We recruited participants from an urban, Midwest academic medical centre in the United States who met study criteria: self-identified African American patients with CKD, between the ages of 18–75 years, English speaking, and without significant cognitive impairment. We screened individuals for possible kidney disease if they had at least one laboratory estimated glomerular filtration rate (eGFR) value less than 60 ml/min/1.73 m², and confirmed their CKD diagnosis if they had decreased eGFR (<60 ml/min/1.73 m²) on two occasions at least 3 months apart and/or had a problem list diagnosis indicating ESRD. Patients were recruited from a convenience sample either from the medical centre’s nephrology clinic or during inpatient visits. Inpatients were screened through medical records of hospitalised patients and nephrology clinic patients were approached directly for the study. Patients who met these criteria were approached in-person by a research interviewer, who described the study and verbally consented patients for participation. Verbal consent was deemed acceptable by the Institutional Review Board because the study was minimal risk and no identifying information was linked to audio-recordings. After participant consent, eligibility was confirmed through medical record review. This project was approved by the University of Chicago’s Institutional Review Board on 8/19/2014.

STUDY DESIGN AND DATA COLLECTION

Trained research interviewers (LL and EA) conducted semi-structured, in-person interviews with participants diagnosed with CKD or ESRD, with experience on dialysis or transplant. An interview guide was formulated based on previous research (Klang et al. 1999; Goovaerts et al. 2005; Sheu et al. 2012; Tong et al. 2014; Kazley et al. 2015; Dahlerus et al. 2016) and utilised as a prompt to elicit detailed responses from participants and influence patient direction of interview. The interview guide explored patient experiences, perceptions, socioeconomic factors, knowledge about CKD (Appendix S3) and RRT (Appendix S4) options, lifestyle barriers and facilitators to treatment, benefits and costs to change, and decision-making preferences, including people who influence patients’ treatment decisions. Cognitive interviews were conducted and feedback was used to modify the interview guide and to enhance clarity.

Additionally, research interviewers reviewed patients’ electronic medical record to acquire demographic information and GFR to stage their CKD. Patients received a $25 gift card upon completion of interview. Patient interviews were conducted in either a semi-private outpatient setting or in private inpatient rooms. Interviews were audio-recorded and independently transcribed. Transcripts were uploaded into NVivo8 software for storage and coding (NVivo8 qualitative data analysis software; QSR International, Melbourne Australia). We used a modified template approach to analyse these interviews; five trained group members (MS, FL, AK, LL, and GM) created an initial codebook, initially organised by the interview guides and then iteratively amended through further data review (Crabtree & Miller, 1999). These reviewers independently reviewed the transcripts. To ensure internal consistency among reviewers, 15% of all transcripts were reviewed in data meetings, which lasted until group members reached consensus on any changes to be made to the codebook. Through this iterative process of analysis and comparison, a final codebook data agreement was reached between reviewers, which allowed for a final, in-depth analysis of all of the transcripts (Braun & Clarke, 2006).

THEORETICAL FRAMEWORK

Both the Health Belief Model (Champion & Skinner, 2008) and the Transtheoretical Model (Prochaska & Velicer, 1997) influenced the objectives of this qualitative study, which was designed to assess the stage of change for RRT selection and investigate patient perception about CKD-related and ESRD-related beliefs and health-related behaviours. The Health Belief Model highlights perceived facilitators, barriers and severity that impact patient decision making and action. Similarly, we used the Transtheoretical Model, also referred to as the Stages of Change, to explore RRT decision-making preferences and considerations amongst CKD patients. For ESRD patients, we evaluated the processes related to lifestyle and behaviour modifications and self-efficacy. These frameworks piloted the development of the interview guide used so patients are able to narrate their knowledge, experience and perceptions related to kidney disease.

DECISION MAKING: STAGES OF CHANGE

We assessed individuals’ RRT decision-making readiness using Stages of Change (Prochaska & Velicer, 1997). We collapsed this six-stage cyclical process into two stages, action and thinking, with the pre-contemplation and contemplation stages characterised as thinking stages, and the preparation and action stages characterised as action stages.

FINDINGS

RESPONDENT CHARACTERISTICS

We interviewed 35 African American patients with CKD or ESRD; 7 incomplete interviews were excluded from the analysis. All of the non-completed interviews were from patients recruited prior to their outpatient medical visit and were not completed because they were called into their physician appointment and were unable to complete post-visit due to time constraints. Of the 28 patients who completed interviews, 22 (79%) had CKD not yet on dialysis or having received a transplant (Table 1), while 6 (21%) had reached ESRD and were receiving treatment for kidney failure (Table 2). Here, we discuss both patients with CKD and ESRD. Most participants were recruited from the outpatient nephrology clinic (N = 26, 93%). More than half of the respondents were women (N = 17, 61%), and one-third were between the ages of 56–65 years old, (N = 9, 32%). Of the participants who had not yet required RRT (N = 22), most had Stage 3 or greater CKD (N = 21, 95%), with the largest proportion of participants with Stage 3 CKD (12/22, 55%).

Table 1:

Participants with non-RRT dependent CKD characteristics.

	N = 22	Percent
Gender
Females	13	59.1
Interview location
Inpatient	2	9.1
Outpatient	20	90.9
Age
18–30	1	4.6
31–45	5	22.7
46–55	2	9.1
56–65	9	40.9
CKD stage
Stage 1 (GFR > 90 ml/min)	5	22.7
Stage 2 (GFR = 60–89 ml/min)	0	0.0
Stage 3 (GFR = 30–59 ml/min)	1	4.6
Stage 4 (GFR = 15–29 ml/min)	12	54.6
Stage 5 (GFR < 15 ml/min)	5	22.7

CKD: chronic kidney disease, GFR: glomerular filtration rate, RRT: renal replacement therapy.

Table 2:

Participants with RRT dependent ESRD characteristics.

	N = 6	Percent
Gender
Females	5	83.3
Interview location
Inpatient	1	16.7
Outpatient	5	83.3
Age
18–30	1	16.7
31–45	1	16.7
46–55	1	16.7
56–65	1	16.7
Past and current RRT modalitya
IHD	2	33.3
HHD	5	83.3
PD	0	0.0
DDKT	1	16.7
LDKT	5	83.3

DDKT: deceased donor kidney transplant, ESRD: end-stage renal disease; HHD: home haemodialyses, IHD: in-centre haemodialyses, LDKT: living donor kidney transplant; PD: peritoneal dialysis, RRT: renal replacement therapy.

^aModalities do not add up to 100% due to patients receiving more than modality in their lifetime.

INTERVIEW THEMES

We identified three themes related to education and treatment planning that were commonly discussed by patients with CKD. First, CKD patients report limited knowledge about home modalities and deceased donor options. Second, many patients with advanced CKD appeared to be in the early decision-making stages (pre-contemplative) regarding RRT and had given little thought to the likelihood that they would someday need to choose an RRT modality. Third, CKD patients appeared to be waiting for doctors to make treatment decisions for them.

For patients with ESRD, three themes also emerged. Patients with ESRD reported wishing they made lifestyle changes earlier to avoid reaching ESRD. Second, patients with ESRD had little knowledge of home modalities and deceased donor options, similar to their counterparts with CKD. Third, patients gained the most knowledge of RRT modalities through their lived experience with their treatments. Illustrative quotes are presented in Appendix 1 and 2.

CHRONIC KIDNEY DISEASE

THEME 1: KNOWLEDGE OF AND PREFERENCES FOR TREATMENT OPTIONS

When prompted about knowledge of RRT options, living donor kidney transplant (LDKT) was identified and discussed more than any other modality, including IHD, HHD, PD, and deceased donor kidney transplant (DDKT). Approximately 73% of participants with CKD verbalised some level of familiarity with LDKT. However, apparent understanding of LDKT varied considerably, from patients expressing a grasp of basic concepts, such as ‘a living human being going to give me a kidney’ (39-year-old male with non-dialysis-dependent CKD Stage 5), to patients that have a comprehensive understanding about LDKT. In comparison, only 23% (5/22) of all respondents with CKD reported knowledge or understanding of PD. In our findings, PD was the least known modality among CKD patients. When asked about PD, another participant, a 61-year-old female with CKD Stage 3, answered:

No, I don’t know nothing about that. First time I ever heard that.

Furthermore, our findings reveal 36% (8/22) of patients reported no knowledge about IHD, 68% (15/22) lacked knowledge of HHD and 50% (11/22) reported no knowledge of DDKT. Patient discussions of methods to treat kidney failure often led to further elaborations about preferences and decision-making factors that influence treatment.

Preferences About Difference Treatment Options

Patients expressed preferences, including perceived benefits and costs of each treatment modality. Some patients discussed multiple treatment options, while others expressed no preferences. Some patients refused to discuss treatment. Among the 22 CKD respondents, 32% (7/22) reported IHD as a preferred modality, while 27% (6/22) reported LDKT as their most preferred modality, 14% (3/22) reported HHD; 9% (2/22) reported DDKT; 5% (1/22) reported PD, 5% (1/22) had no preference and 23% (6/22) declined to answer (percentages sum to greater 100% due to selection of multiple preferred modalities). One illustration of multiple preferences and decision making is reflected in the following example:

Well, I was thinking about the one that you go for three days out of the week. Okay, I forget the name…Either one. Either one. It depends. If I’m not a match [for transplant], I’ll still have to do that three days out of the week.

(59-year-old female, CKD Stage 5)

THEME 2: DECISION MAKING—STAGES OF CHANGE

We found that knowledge influences the decision-making process. When asked about feelings about making treatment decisions, 95% (21/22) of CKD respondents made thinking statements compared with 5% (1/22) of CKD respondents who made action-oriented statements.

Thinking Stages

Pre-contemplation

When patients were asked based on what they already know which RRT method would work best for them, a few patients (N = 5) declared pre-contemplative responses about RRT preferences. For example, a 65-year-old male patient with CKD Stage 3 stated:

…once you start worrying about stuff, then stuff start to happening. So my philosophy is if I pay you to take care of me, why don’t you worry and let me be free?

Contemplative

A quote by a 65-year-old male with CKD Stage 3 illustrates what considerations are included in the decision-making process:

I’ll pick out which is best for me. I couldn’t answer that. I’d have to figure out what’s the best suited for me…When I find out what’s best, would work for me time-wise, date-wise, facility-wise, doctor-wise.

Education and physician recommendation are primary facilitators to positive decision making about RRT. Although only a few patients completely refused to discuss habits and decisions, most patients in the thinking stage generally acknowledged awareness of consequences of not planning for kidney failure, but still did not have a plan for treatment. These patients explored this ambivalence and desired additional information to stimulate action.

Acting Stages

Preparation

Conversely, one respondent who was in the action stages, had made decisions about a treatment modality and was preparing for receiving treatment. One 44-year-old male respondent with CKD Stage 5 stated an example of an action statement:

Getting an appointment for a]A workup? I already had the transplant workup, so I’m fine with that. asking friends or family to consider a living donor?]Yeah, that’s the one thing I’m discussing.

THEME 3: PEOPLE WHO INFLUENCE DECISION MAKING

Our findings show that patients are influenced by doctors and others who have experienced RRT. Patients prefer treatment decisions to be using physician-provided education and personalised recommendations, and with input from patients who have had experience with various RRT modalities. Patients shared their experience about who influenced their ESRD treatment modality choices.

Physician and Current Patients

A 69-year-old female with CKD stage 3 reported:

…I would love to get the information from a person that was getting dialysis and…from a renal doctor and my primary doctor. If I needed that type of information, I would contact that type of doctor first.

A 69-year-old male patient with CKD Stage 5 responded to the interviewer:

I don’t know [what I could do next about coming to a decision about ESRD]. I just listen, I just follow the doctor’s lead.

This snapshot of an interview with a 61-year-old female with CKD Stage 3 identified the tension between planning for RRT and working to delay progression to ESRD. Although she suggests talking to a patient with ESRD, she approaches this as a facilitator to behavioural changes:

I think I would talk to somebody that has already been through that from the standpoint of learning what not to do, to hold that off as long as possible. Not from the standpoint so I know what that’s like. That’s not my goal, to focus on kidney failure or… My goal is to focus on making my kidney disease as healthy as possible for the present.

More than of third of CKD patients (36%) reported wanting to learn more about treatment options. Of those, 32% wanted to consult with a doctor, 32% wanted to discuss with family/friends, 27% were willing to consider dialysis, and 14% were willing to consider transplant.

END-STAGE RENAL DISEASE

THEME 1: KNOWLEDGE OF LIFESTYLE CHANGES TO PREVENT ESRD

ESRD patients indicated having acquired information helpful to improve CKD management and delay progression to renal failure. Similarly, a 36-year-old male respondent stated:

I love Popeye’s. But now I don’t eat it. I learned this when I was on dialysis. A lot of things I don’t eat anymore. Used to love Pepsi. They don’t tell you this until it’s too late…If I had known how to eat I think I would have been all right.

One ESRD respondent, 35-year-old female with a treatment history of IHD and DDKT reflected on what she wished to have known to delay progression of renal failure:

[H]ad we known about that protein in the urine and that that’s a sign that something is not right, that probably would have made a huge difference.

THEME 2: KNOWLEDGE AND PREFERENCES OF RRT TREATMENT OPTIONS

Similar to those with CKD, 67% (4/6) of respondents with ESRD expressed detailed knowledge of IHD and LDKT and 33% (2/6) equally conveyed some familiarity with home modalities (HHD and PD). Surprisingly, two patients reported no knowledge about IHD or PD. RRT knowledge was associated with patient preferences and the decision-making process. We interviewed patients about facilitators to selecting a treatment for kidney failure. Overall, half (3/6) of ESRD patients preferred IHD, with (2/6) expressing partiality towards LDKT. Although only one patient’s first choice was DDKT, neither HHD nor PD were identified as options for any of the interviewed ESRD patients. Respondents shared their perceptions of the benefits and costs of each modality that influenced their treatment decisions.

In-Centre Haemodialysis

When asked what assisted patients in making decisions about which treatment options for kidney failure, a 28-year-old female on IHD and listed for kidney transplant, responded by stating:

Well, I can weigh my own options. Because one, I don’t want no things sticking out of my stomach. And what was the other one? It was three of them, and I just ended up picking the catheter.

Living Donor Kidney Transplant

A 75-year-old female previously on IHD and currently a kidney transplant recipient reveals the positives and negatives of LDKT:

That it’s someone that you know. You know their history… Negatives? …if it’s your child that you would be worried about what if something happened to their other kidney.

Deceased Donor Kidney Transplant

A quotation from an interview with a 35-year-old female respondent with a history of DDKT and IHD summarises her preferences for a living versus deceased donor.

The pros of the living is it’s a healthier kidney. It will definitely usually last longer. The prospects are just better. Cons, worrying about your loved one and the sacrifice that they’re making. You wouldn’t want anything to happen to them because they’re trying to give you a gift. So that’s the con with it. A cadaver kidney, the pro—and it’s like it’s so hard to almost say pro because you know someone is losing out. That’s the biggest con. You know you’re getting this gift through somebody else’s pain. I think that’s the most difficult thing.

Home Haemodialysis

Patients relied on education and experience from family members which influenced their preferences. A disclosure from a 46-year-old female with a history of LDKT and IHD:

Me and my sons [decided what treatment options to use]. Because I wanted to do it at home and they didn’t want me to do it at home. My son’s a reader and he said it’s not good to do it at home…You have to be very, very sanitized. He said Ma, we can’t do that.

Peritoneal Dialysis

One respondent, 35-year-old female with a history of DDKT and IHD stated:

I didn’t want that [peritoneal dialysis]. I just feel like it restricts you a lot more. You have to be so careful in terms of making sure that the area’s always clean, and being touched. And I have nieces and nephews, and I love, like I want them to be able to run up to me and hug me and stuff, so with dialysis, it was like the easiest route, and I felt like I had more of a natural quality of life as opposed to having so many restrictions on a day-to-day basis.

THEME 3: PATIENT LIVED EXPERIENCE OF TREATMENTS

Most (83%, 5/6) subjects changed treatment modalities. Of the 6 patients, 100% (6/6) received a kidney transplant, with 5 recipients of a DDKT and 1 of a LDKT. Additionally, 5/6 (83%) of patients who received a transplant also experienced HD, followed by 1/6 (17%) patients who experienced PD in addition to HD, and 1/6 (17%) who denied dialysis treatment. A 51-year-old female patient shared her experience changing modalities between PD, IHD, and DDKT:

I had my kidney transplant here. Had it done 11 years ago… It was a cadaver kidney… They discussed peritoneal. I had an option between peritoneal working for me for a short time. I actually chose, I had to do hemo until my site started working. I did peritoneal for a year, then my site stopped working, then I had to go back on hemo.

DISCUSSION

In a sample of urban, African American patients with advanced CKD and ESRD, most patients reported limited knowledge of home dialysis modalities and deceased donor transplantation. Patients with CKD had modest knowledge about IHD and living donor transplantation. This overall lack of knowledge was surprising, given that over 90% of patients were recruited from the nephrology clinic and over 95% had CKD Stage 3 or above. Potential explanations for this lack of patient knowledge about RRT include poor patient understanding, patient denial, poor physician communication, and physicians not initiating explicit discussion because they do not want to worry patients. (Finkelstein et al. 2008; Fadem et al. 2011; Greer et al. 2015; Lissanu et al. 2019). In our qualitative work, we were only able to probe what patients actually reported knowing about RRT options, not what they had been told previously.

Similarly, when examining RRT knowledge and preferences of patients who had already reached ESRD, we had similar findings. Overall, ESRD patients reported a high level of knowledge of IHD and living donor transplantation. We found that patients still had limited knowledge about home dialysis modalities. Many patients with ESRD had personal treatment experiences with IHD. However, despite high levels of reported knowledge of living donor transplantation, most of the transplant recipients had received a deceased donor kidney.

We were surprised to find a moderate-to-high level of awareness of living kidney donation. Earlier work has focused on African Americans’ lack of knowledge of living kidney donation (Callender et al. 2002; Jacob Arriola et al. 2007; Arriola et al. 2014). Our work supports the more recent emphasis on helping African Americans translate their knowledge of living kidney donation to action to obtain a living kidney donor (Rodrigue et al. 2008; Strigo et al. 2015; Patzer et al. 2019).

Our work is consistent with a large body of literature that describes limited knowledge and negative views of home modalities among people with CKD from minority groups (Delano et al. 2002; Sheu et al. 2012). Although some patients expressed negative views of PD or HHD, many patients were simply not fully aware of home modalities. To increase use of home modalities, for African Americans and overall, healthcare providers must solicit patient preferences, determine if PD or HHD is consistent with those preferences, educate about these options and then make a recommendation. Our work suggests that patients want their physician to make a personalised recommendation that takes into account the patient’s clinical context and personal preferences.

Another important finding is that patients with CKD want ‘expert’ guidance in choosing RRT modalities. First and fore-most, patients reported looking to their physician to guide their modality selection. Another potentially underused source for guidance is from patients who have already reached ESRD and chosen a modality. Given current underuse of home modalities and transplants within minority communities, care must be taken so that peer education does not perpetuate disparities. A formal programme that allows patients to hear about various modalities from similar patients, either in-person, through peer matching or through media, can help patients consider RRT options beyond IHD. Family members should also be involved in the RRT decision-making process. Although our respondents were more likely to consider physicians or peers as influencing treatment decision making, family appeared to have important ‘veto’ power as they might be involved in their care. That is, family members discouraged RRT modalities they felt would not be consistent with patient preferences or abilities.

Finally, we found that many patients, despite advanced CKD, are still in the early stages of considering RRT. Based on the Stages of Change, almost all of our respondents (95%) were in the pre-contemplation stage regarding RRT selection. Our prior work found that one significant barrier to CKD education and RRT selection is patient denial about their CKD (Lissanu et al. 2019). Most patients with advanced CKD did not believe that their kidneys were likely to fail within the next 5 years. Programmes for RRT modality selection should focus both on preventing CKD progression, ‘hoping for the best’, while simultaneously considering RRT options, ‘preparing for the worst.’

LIMITATIONS OF THE STUDY

Our study had limitations that should be considered. First, we interviewed a relatively small number of African Americans from a limited geographic area, one medical centre in Chicago, a large Midwestern city in the United States. Although we reached theme saturation among our participants, additional concepts or themes might be generated by interviewing participants in different cities or in different geographic areas (e.g. rural or suburban settings). Second, we used a convenience sample of respondents, and their responses may not be representative of all African American patients with CKD. Due to recruitment within the nephrology clinic, most patients with ESRD had already received a kidney transplant. Patients with ESRD still on IHD more often see their nephrologist while in their dialysis unit, thus are less likely to appear in the nephrology clinic. However, given our high proportion of post-transplant patients, we would expect more knowledge of other RRT options given both the extensive education process that transplant patients undergo and that transplant patients may be more motivated or informed than their counterparts that remain on dialysis.

IMPLICATIONS FOR PRACTICE

The information we gathered from our interviews will inform key components of our pilot intervention for hospitalised African American patients with advanced CKD. This intervention will include culturally adapted education for African Americans through an in-person educator and written materials and will also address access to care. This pilot intervention could also support education efforts for minority patients throughout the world. Patients will benefit from a proactive approach that will address both patients aware and unaware of CKD diagnosis and prepare them for future treatment plans while providing support. The patient educator will be knowledgeable about medical resources and trained in motivational interviewing techniques in combination with strategies to elicit self-efficacy, shared decision making, and healthy coping.

First, patient knowledge of CKD stage and severity is an important barrier. The patient educator will explicitly mention patients’ ‘advanced CKD’ and explain CKD-related medical terms in plain language. Second, we want to allow patients to have hope that their kidneys will not fail, while addressing their denial about the severity of their CKD. Prior work suggests a pre-dialysis psychosocial intervention both increases patient knowledge and time to dialysis initiation (Devins et al. 2005; Manns et al. 2005). We aim to not only increase patient knowledge about RRT options but also to improve patient understanding and ability to prevent disease progression. To that end, we will also provide written materials, which will be reviewed with the patient educator, but then given to the patient as a reference. Patients’ family members at the bedside will be able to participate in the education session and/or review the educational materials provided. Finally, we were reminded of the barriers that patients must navigate in managing their health. Our intervention patient educator is a racially concordant social worker who can provide education, support, and motivation. Strategies used in the intervention will be motivational interviewing and psychoeducational techniques to increase patient understanding of their illness, and to improve patient decision-making and coping skills (Miller & Rollnick, 2002; García-Llana et al. 2014). Finally, the patient educator will communicate with the inpatient team to make the appropriate referrals to social work, nephrology, dialysis access clinic, or transplant clinic.

CONCLUSION

In the United States, African Americans have reduced access to transplantation and home dialysis compared to their white counterparts. We found that most African American patients with CKD and ESRD lacked knowledge of both deceased donor transplantation and home dialysis modalities. In addition, patient knowledge of living donor transplantation did not translate to increased access to that modality. We also found that even patients with advanced CKD were still in the early stages of RRT selection. Knowledge of these barriers could inform clinical interventions to identify, educate and motivate patients to increase CKD self-care and to improve communication and shared decision making between African American CKD patients in the United States, patients with CKD from minority groups throughout the world, and their families and providers about different RRT treatment options.

BIO DATA

Milda Saunders, MD, MPH, is an Assistant Professor of Medicine at the University of Chicago Medicine. Her research focuses on reducing disparities and improving the quality of care for patients with advanced chronic kidney disease. Her current work, funded through the National Institutes of Diabetes and Digestive and Kidney Diseases, is a project to develop and implement a patient education and referral programme for hospitalised patients.