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Knowledge and perception of home dialysis in ESRD patients: A survey in incident and prevalent patients undergoing in-center HD
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By Sharon Pienkos, BS; Sumi Sun, MPH ; Sheila Doss-McQuitty, BSN, RN, CNN, CCRA; Thomas Czajkowski, BS; Brigitte Schiller, MD, FACP
Abstract
Home dialysis modalities continue to be disappointingly underutilized in the United States despite medical benefits and improved quality of life. Dialysis options education has been shown to be the primary driver that increases the use of home modalities, and has resulted in a home penetration of 23% at our centers. We were interested in evaluating the level of education in home therapies in both incident and prevalent in-center hemodialysis (CHD) patients.
Of the 316 CHD patients surveyed, the vast majority of both incident and prevalent (> 90 days on dialysis) had been told about home dialysis, with 56-57% having discussed the topic with their nephrologist. Only 30% of incident and 23% of prevalent patients had attended a dialysis options class, and 41% of incident and 52% of prevalent patients voiced a strong preference for in-center dialysis. The respondents indicated that the main barriers to home therapies were fear of complications and feeling incapable of performing the therapy. Incident patients were more open to a potential switch to a home therapy than prevalent patients, thus suggesting a benefit of early education before or shortly after dialysis initiation.
Introduction
Home dialysis therapies are an effective alternative to traditional in-center hemodialysis (HD), however they continue to be underutilized in the United States, with less than 10% of ESRD patients undergoing home therapies, including peritoneal dialysis (PD) and home hemodialysis (HHD).1 This trend has persisted for many years despite multiple reports emphasizing various benefits of both home modalities, including improved lifestyle for the patient, and equivalent or improved clinical outcomes in some observational studies for both PD and HHD.2, 3 Many patients treated with a home modality enjoy the added freedom and flexibility in their daily routine, adding control to their lives while eliminating travel to and from a dialysis center several times per week. Furthermore, lower costs associated with the delivery of home therapies make them an attractive alternative in an economically challenged health care environment. A lower hospitalization rate contributes to the economic advantage while decreasing the disease burden for patients.4
Pre-dialysis education has consistently been shown to increase the likelihood of patients choosing a home modality for ESRD care.5 Despite the many avenues available, education is not always provided in a timely, effective, and comprehensive manner. Missed opportunities include center patients' perceptions of never having been given a choice and regrets of not attending an educational program prior to starting dialysis.6 A review of qualitative studies on modality decision-making demonstrates that nephrologists often wait until the start of dialysis is imminent, thereby leaving little time for patients at this critical juncture to consider the various treatment options and to make a decision considering the implications of therapy on their lifestyle.7
Education on modality choice has been found to be the single most defining element for patients to choose a home modality as their dialysis therapy.5,8 Satellite Healthcare, a not-for-profit dialysis provider located in Northern California, established dedicated home dialysis centers of excellence with the goal of overcoming barriers to home modalities through structured education and training opportunities. Since the implementation of the options education program for patients with CKD stage 3-5 prior to the start of dialysis, 50% of patients have chosen a home modality. Currently 24% of the incident patients in our centers initiate dialysis with PD and 4% with HHD.
Purpose
The purpose of this survey was to gain further understanding of how dialysis modality education is or is not delivered in an environment where access to both education and training in home therapies is readily available, and how this affects modality choice among CHD patients. Previous research among WellBound home dialysis patients, using a similar questionnaire to the one used for this study, revealed that there is a high level of knowledge and awareness of modality options among this population.9 As the initial linear growth in home dialysis patients plateaued after several years, we sought to explore possible “missed opportunities” among patients treated with in-center HD.
Subjects and methods
The subjects were dialysis patients receiving in-center treatment at 16 centers in the San Francisco Bay area and five centers in the area surrounding Austin, Texas. Demographic characteristics including name, age, gender, first date of ESRD, residential status, marital status, employment, and incident or prevalent status and comorbidities were collected. Sampling was stratified by incident and prevalent (>90 days on dialysis) status to ensure an adequate sample size of incident patients.
The questionnaire consisted of seven questions with multiple components; four were yes/no responses and four allowed for multiple responses. Questions addressed prior education about alternative dialysis options, the setting, relation to dialysis initiation, educational format and identification of the educator(s). Two multiple response questions addressed the barriers to home dialysis therapy as well as potential factors that may incentivize patients to switch to home therapy. The questionnaire was administered by three study coordinators to 316 patients from January to June 2012, with 100 incident patients at the time of the survey. The questionnaire was mostly read to patients and responses were recorded by the study coordinator for ease of completion during dialysis.
Characteristics of incident and prevalent patients were compared using Pearson’s chi-square test for categorical variables and the student’s t-test for continuous variables.
Results
Of the 337 patients approached, 316 participated, yielding a 94% response rate. The mean age of respondents was 61.4 and 58% were male, consistent with a representative sample of the U.S. dialysis population (mean age of 61.2 and 57% male per USRDS 2012).1 Thirty-two percent of the participants were incident patients, who were significantly older (p=0.03) and less likely to live with others (p=0.04). Additional demographic characteristics are shown in Table 1. Eleven partially-completed questionnaires were included in the results.
More than 80% of both incident and prevalent CHD patients indicated that they had been told about home dialysis options at the time of survey (see Figure 1). Patients reported discussing alternative therapies in addition to their nephrologist with social workers, nurses, dietitians, patient care technicians, and occasionally fellow patients. Fifty-six percent of incident and 57% of prevalent patients had spoken with their nephrologist about home therapies at the doctor’s office or in the hospital prior to starting dialysis (Figure 1), with 40% of these patients reporting having attended a dialysis options class (48% incident and 37% prevalent). In contrast, only 6% of all patients who had not been educated by their nephrologist about home dialysis prior to starting dialysis reported attending a dialysis options class. Overall attendance of options classes was 30% among incident and 23% among prevalent patients (Figure 1). Almost two-thirds of patients reported hearing about home dialysis in the dialysis center (56% incident and 67% prevalent) (Figure 1). Other places where home therapies were mentioned include the physician’s office and the hospital. Only 3% of patients found information online.
When evaluating the factors that might prohibit a patient from pursuing a home therapy, roughly half of the patients reported an overall preference for CHD (see Figure 2), with a slightly higher percentage among prevalent patients when compared to incident (52% vs. 41%). Sixty percent of prevalent patients and 35% of incident patients reported feeling incapable of performing dialysis at home or fear of complications and/or self-needling. Fifty-five percent of prevalent patients and 39% of incident patients reported reluctance to burden the family with home therapy and/or a lack of a suitable home environment. Medical conditions (13% incident and 17% prevalent patients) or time commitment (5% incident and 13% prevalent patients) also limited their willingness to choose home therapies. Sixty percent (67% prevalent and 46% incident) of patients responded that “nothing” would make them likely to switch to a home therapy (see Figure 3). Of these 183 patients, 31% also did not feel capable of doing dialysis at home, 32% did not feel their homes were suitable for dialysis, and 37% had fear of complications. Twenty-six percent of incident and 25% of prevalent patients mentioned that regular help at home with dialysis treatments would increase the likelihood of switching to home therapy. In addition, the prospect of having a better quality of life or increased familiarity with the home training team appeared to be a possible incentive, especially for incident patients (Figure 3).
Discussion
The patients in this study on CHD displayed a high awareness of alternative therapies in both the incident and prevalent patient populations, with more than 80% indicating that they had been told about home dialysis options. This likely reflects the continued effort to promote home therapies throughout the area and the organization over the past few years. The topic has become a routine part of the nephrologist-patient conversation, as almost 60% of both incident and prevalent patients have heard about alternative therapies from their nephrologist. This is very different from prior reports indicating that the majority of CHD patients had not been told about home dialysis.8 However, knowledge about home therapies among in-center patients is still less common compared to patients undergoing home dialysis, where almost 30% more indicated having had this conversation with their nephrologist.9 It appears that this early discussion is also very influential in determining whether further education about home modalities will occur through options classes. Only 6% of CHD patients attended an options class when their nephrologist did not address alternative therapies. In contrast, 48% of incident and 37% of prevalent patients who had a conversation about home options with their nephrologist attended an options class. This underscores the critical role of the referring nephrologist in the process of choosing a dialytic therapy.
Conversations about home therapies were also conducted by other disciplines within the dialysis centers, including nurses, social workers, dietitians, and patient care technicians. Our questionnaire indicates that these kinds of discussions occur in various other locations as well, ranging from doctor’s offices, hospitals, to casual encounters with family or friends. In this population the Internet is rarely the source of this information. One might speculate that a multi-disciplinary approach would likely be beneficial in the centers, but would require more coordination to ensure that patients capable of performing a home therapy are reached. Our results show that the barriers for home therapies differ between incident and prevalent patients. Twenty-five percent more prevalent than incident patients cited fear and/or feeling incapable of performing home dialysis emphasizing the lack of confidence with self-care at home. In addition 16% more prevalent patients expressed concerns about home and family barriers to pursuing a home therapy stressing the possible burden in logistics and care-partner support. Furthermore, the percentage of prevalent CHD patients preferring in-center dialysis compared to incident patients is 11% higher (52% vs. 41%) possibly reflecting adaptation to CHD over time. Half of the attendees of option classes have consistently chosen in-center therapies. The survey suggests that incident patients are more open to alternative options, reinforcing the need to provide patient education about home dialysis as early as possible and confirming the value of programs that do so.
Overall, 60% of patients indicated that nothing would influence them to switch to a home therapy, with more prevalent than incident patients responding in this manner (67% vs. 46%). This is consistent with the responses regarding barriers to pursuing a home therapy, in which we observed that prevalent patients were more likely to prefer their current therapy. Twenty-six percent of prevalent patients and 25% of incident patients indicated that help at home with dialysis would make them more likely to switch to home therapy. While this may be a challenge in the current health care system in the United States, future models may be more welcoming to such interventions.
Surprisingly, only 19% of incident and 10% of prevalent patients responded that the prospect of a better quality of life might change their attitude to home dialysis, suggesting that patients do not associate home dialysis per se with a better quality of life. This may reflect how home therapies are introduced to patients with "quality of life" being possibly dominated by the theme of "dialysis being provided in-center" versus "doing dialysis yourself at home." Perhaps communicating to patients the concept of quality of life in terms of daily routine beyond the therapy, including the need for travel and lack of flexible schedule, may increase the understanding of this differentiating factor between center and home therapies. We speculate that patient-to-patient interaction may be more effective in sharing this important aspect of dialysis therapy.
It is evident from our data that knowledge of home therapies is high among our patient population. Knowledge of HHD and PD is gained through many different sources. While 23% home dialysis penetration in the United States is a remarkable achievement, it is apparent that the current plateau in home therapy growth either reflects the maximum achievable or the need for infrastructure improvements and/or earlier and more intensive education by referring nephrologists.
Our data suggest that a focused and structured education process, primarily for incident CHD patients, is likely to persuade some in-center patients to switch to home therapy. Increased support for the patient at home aligned with the appropriate reimbursement may empower the general U.S. nephrology community to achieve the modality distributions similar to the ones found in Australia (approximately 30% of all dialysis patients on a home therapy) and New Zealand (53% of all dialysis dependent patients used home dialysis in 2010).10.
References
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10. Method and Location of Dialysis. [4-3 – 4-4] ANZDATA Registry Report 2011. Australia & New Zealand Dialysis & Transplant Registry. Adelaide, South Australia, 2012
Mr. Pienkos is a research associate at Satellite Healthcare Inc. in San Jose, Calif. Dr. Sun is an epidemiologist at Satellite Healthcare Inc. Ms. Doss-McQuitty is the Nursing Director of Research at Satellite Healthcare Inc. Mr. Czajkowski is a fourth year medical student at North Chicago Medical School at Rosalind Franklin University of Medicine and Science in Chicago. Dr. Schiller is the Chief Medical Officer at Satellite Healthcare Inc.