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

**Background:** Patients with kidney failure receiving dialysis were unable to stay home during the COVID-19 pandemic and faced risks from unavoidable proximity to others during treatments. This population has higher rates of depression (22.8-39.3%) and is at increased risk for COVID-19 complications due to comorbidities. While dialysis units implemented strict infection control measures, these may have negatively impacted patient mental health. Data on patient experiences during the pandemic were sparse, with most studies focusing on quantification of mental health conditions rather than patient-reported care experiences.

**Methods:** The study team designed a survey with Likert scale multiple-choice questions and open-ended prompts covering access to care, changes in dialysis schedules, and mood. Surveys were verbally administered to adults receiving dialysis at three units affiliated with a single academic nephrology practice in Connecticut, after the first wave of COVID-19 (March-June 2020) and before the second wave (winter 2020). In-center hemodialysis patients were surveyed in person during treatment; home modality patients were surveyed by telephone. The PHQ-2 depression screening tool was included, with a score ≥3 considered positive for possible depression. Open-ended responses were analyzed using thematic analysis with a semantic, inductive approach. Of 261 patients, 35 were excluded (9 started dialysis after pandemic onset, 13 hospitalized, 13 with cognitive/communicative barriers). Of 226 eligible patients, 18 declined, 35 could not be contacted, and 1 incomplete response was excluded, yielding 172 participants (76% of eligible).

**Key Results:** Participant characteristics: 50% Black/African American, 23% White, 13% Hispanic; 76% on in-center hemodialysis (ICHD), 16% peritoneal dialysis, 9% home hemodialysis; 33% self-reported pre-existing mental health conditions. Most participants felt "very connected" or "usually connected" to their dialysis team. However, the 8 participants who felt "not at all connected" were all receiving ICHD and identified as non-White. Regarding access to care: 17% reported new transportation issues, 6% trouble obtaining medications, 9% trouble getting groceries, and 20% trouble maintaining diet. Non-White patients and those with mental health histories more commonly reported difficulties with groceries (11% vs. 3% for White patients; 21% vs. 3% for those without mental health history) and maintaining diet (22% vs. 13%; 33% vs. 13%). When asked about perceived changes in care, 68% felt care had not changed, 27% felt more cared for, and 5% felt less cared for—most of the latter had histories of anxiety and/or depression. On PHQ-2 screening, 9% (n=15) met criteria for possible depression, with 80% of these having pre-existing depression. Four themes emerged from qualitative analysis: (1) COVID-19 did not significantly affect dialysis care experience; (2) COVID-19 significantly impacted other aspects of life affecting mental and physical health; (3) patients valued consistency, dependability, and personal connection to staff; (4) the pandemic highlighted the importance of external social support.

**Clinical Implications:** This study suggests that while most dialysis patients perceived their care as unchanged early in the pandemic, vulnerable subgroups—non-White patients, those on ICHD, and those with pre-existing mental health conditions—experienced greater difficulties with access to care and may benefit from closer monitoring and additional resources. The importance of consistent dialysis care teams and social support networks was emphasized. Limitations include single-center design, lack of validated questionnaires for most survey items, potential recall bias, lack of privacy during in-center survey administration, and absence of statistical adjustment for confounders. Multi-center studies with larger samples are needed to confirm these findings and explore disparities in care during public health emergencies.