Dialysis Patient Experiences During the COVID-19 Pandemic: A Survey Study

Abstract

Rationale & Objective: The coronavirus disease 2019 (COVID-19) pandemic imposed several changes in the care of patients with kidney failure receiving dialysis. We explored patient care experiences during the pandemic. Study Design: The study team verbally administered surveys including Likert scale multiple-choice questions and open-ended questions and recorded responses. Setting & Participants: Surveys were administered to adults receiving dialysis through an academic nephrology practice after the first wave of the COVID-19 pandemic. Exposure: Outpatient dialysis treatment during the COVID-19 pandemic. Outcomes: Perceptions of care and changes in health. Analytical Approach: Multiple-choice responses were quantified using descriptive statistics. Thematic analysis was used to code open-ended responses and derive themes surrounding patient experiences. Results: A total of 172 patients receiving dialysis were surveyed. Most patients reported feeling “very connected” to the care teams. Seventeen percent of participants reported transportation issues, 6% reported difficulty obtaining medications, and 9% reported difficulty getting groceries. Four themes emerged as influencing patient experiences during the pandemic: 1) the COVID-19 pandemic did not significantly affect participants’ experience of dialysis care; 2) the COVID-19 pandemic significantly impacted other aspects of participants’ lives, which in turn were felt to affect mental and physical health; 3) regarding dialysis care experience more generally, participants valued consistency, dependability, and personal connection to staff; and 4) the COVID-19 pandemic highlighted the importance of external social support. Limitations: Surveys were administered early in the COVID-19 pandemic, and patient perspectives have not been reassessed. Further qualitative analysis using semi-structured interviews was not performed. Survey distribution in additional practice settings, using validated questionnaires, would increase generalizability of the study. The study was not powered for statistical analysis. Conclusions: Early in the COVID-19 pandemic, perceptions of dialysis care were unchanged for most patients. Other aspects of participants’ lives were impacted, which affected their health. Subpopulations of patients receiving dialysis may be more vulnerable during the pandemic: those with histories of mental health conditions, non-White patients, and patients treated by in-center hemodialysis. Plain-language summary: Patients with kidney failure continue to receive life-sustaining dialysis treatments during the coronavirus disease 2019 (COVID-19) pandemic. We sought to understand perceived changes in care and mental health during this challenging time. We administered surveys to patients receiving dialysis after the initial wave of COVID-19, asking questions on topics including access to care, ability to reach care teams, and depression. Most participants did not feel that their dialysis care experiences had changed, but some reported difficulties in other aspects of living such as nutrition and social interactions. Participants highlighted the importance of consistent dialysis care teams and the availability of external support. We found that patients who are treated with in-center hemodialysis, are non-White, or have mental health conditions may have been more vulnerable during the pandemic.

Keywords

• Kidney failure
• end stage kidney disease
• dialysis
• kidney replacement therapy
• patient experience
• perceptions of care