Patients’ and family members’ perspectives on arrhythmias and sudden death in dialysis: the HeartLink focus groups pilot study

Patients initiating dialysis for end-stage kidney disease (ESKD) face a high risk of cardiovascular disease (CVD), arrhythmia, and sudden cardiac death (SCD).[1] Arrhythmia detection by miniaturized implantable cardiac monitors (ICMs)[2‐7] may help individualize care by promoting the use of established management strategies for arrhythmias.[8] Few nephrologists and patients, however, are aware of these devices. We report the results of a qualitative study assessing patients’ and family members’ knowledge gaps.

As part of a larger study, we developed educational materials to increase ESKD patients’ and family members’ awareness of CVD, arrhythmias, and ICMs (see Supplemental Materials). Participants were recruited from two hemodialysis clinics in Baltimore, Maryland. All participants were age ≥ 18 years, spoke English, and provided oral consent. The project was reviewed by the Johns Hopkins Medicine Institutional Review Board (IRB00133847) and designated as a quality improvement project which allowed waiver of written consent. Two moderators led the focus groups and asked participants open-ended questions. Discussions were audiotaped and transcribed for template analysis.[9].

Nine patients (7 male, 2 female; ages 28–67) and 3 family members participated. All patients self-identified as non-Hispanic (8 African -American, 1 White). Patients’ highest completed level of education included high school (3), two years college (2), four years college (1), and graduate/professional school (3). Six themes emerged from the focus groups: knowledge about CVD, knowledge about arrhythmias, family member involvement, source of education about CVD/arrhythmia, impressions about ICMs, and impressions about ICM educational materials.

Overall, we found that patients/family members were aware that there are different types of heart disease, such as hypertension, but had much less knowledge about arrhythmia. As demonstrated here, patients experience arrhythmia differently and at times do not realize that their symptoms reflect complex pathophysiology involving the kidneys, heart, and dialysis. Arrhythmia and sudden cardiac death are the leading causes of mortality for ESKD patients receiving dialysis and our results imply that patients and their families do not fully understand these risks (Table 1). Notably, appreciation of these risks often occurred after being notified by a physician in an urgent/emergent setting or after developing sequelae of untreated CVD. Additionally, many arrhythmic episodes are asymptomatic. Thus, in addition to educating patients about common clinical presentations, arrhythmia management in the dialysis population may also be improved by cardiac monitoring programs that allow for the early detection of otherwise “silent” pathologic rhythms.

Our focus group suggested that patients and family members were overall intrigued by ICMs and found the educational materials straightforward. The majority of concerns were related to adverse and cosmetic effects, as well as the event notification process itself. Comments from participants suggested that ICM enrollment could be improved by addressing such concerns in educational materials; for example, by including a “pros and cons” section as well as a reminder to speak to providers about device eligibility (Table 1). In addition, patients and family members expressed uncertainty over whether dialysis staff would be able to answer questions regarding arrhythmia/SCD and indicated that they would prefer receiving this education from physicians. These results underscore the role of the nephrologist in patient education. While the management of “traditional” complications of ESKD (e.g. hypertension, anemia, hyperphosphatemia) is standardized within Nephrology, management strategies for associated cardiac events such as arrhythmia/SCD are not well defined. Efforts to improve ICM adoption among dialysis patients could be aided by a “Cardiorenal” curriculum that includes procedural skills for monitor implantation and arrhythmia identification and management.[8] Implementing such a curriculum for trainees could help prepare future nephrologists in addressing patients’ concerns and knowledge gaps about arrhythmia/SCD.

In our study, patients and their family members agreed that families should be present during dialysis education. Notably, family members observed that dialysis patients sometimes withhold disclosing new symptoms, suggesting perhaps that while patients generally do want families to be involved in their care, there is gradation to the extent that this involvement is desired by patients (Table 1). Such behavior, though not explored in this study, can possibly be better understood when considering the psychological burden of dialysis. As documented previously in the literature and noted in our clinical experience, dialysis initiation is an emotionally traumatic event that carries the stigma of illness.[10] Although beyond the scope of this study, further work investigating the psychosocial challenges faced by dialysis patients could help clarify how certain patients, rather than being “non-compliant”, are simply overburdened by disease. Our findings highlight the important task nephrologists undertake in not only educating patients and their families, but also in helping them navigate the intangible psychosocial complexities of ESKD.

Our study contains limitations worth mentioning. First, the number of participants was small, likely limiting the range of discussion topics. A larger study with more patients and family members could possibly clarify beliefs and behaviors that our study did not address; for example, why a patient/family member did not think that hypertension or palpitations are related to dialysis, or why a patient chose not to tell their family about possible symptoms. Second, patients were recruited from two urban dialysis units; the medical literacy, experiences, and concerns of the participants might not match those of patients/families from other geographic areas. Third, not all patients attended the focus group with family. We did not collect information on the reasons for non-attendance, which could include a combination of competing time commitments, caregiver burden, or lack of participation in patients’ healthcare decisions. Given the unique perspective provided by family members, their absence limits the generalizability of our study. Although 3 family member participants is a small number, we believe that a small focus group around a highly specialized area of knowledge and experience is preferable over a survey design.[11] Future focus groups can build on our preliminary data by recruiting more participants to allow for a more comprehensive exploration of patient and family perceptions.