Stressors and Information-Seeking by Dialysis and Transplant Patients During COVID-19, Reported on a Telephone Hotline: A Mixed-Methods Study

RATIONALE & OBJECTIVE: In early 2020, we activated a telephone hotline, the coronavirus disease 2019 (COVID-19) Kidney or Transplant Listening and Resource Center, to learn more about the impact of the COVID-19 pandemic on the stress and information-seeking behaviors of dialysis and transplant patients. STUDY DESIGN: A mixed-methods study including semi-structured, qualitative interviews probing about emotional, health, and financial challenges experienced and quantitative surveys assessing depression and anxiety levels and information-seeking behaviors. SETTING & PARTICIPANTS: 99 participants (28 dialysis patients; 71 transplant patients), varying by race and ethnicity (Hispanic, 25.3%; White, 23.2%; Asian, 24.2%; Black, 24.2%), shared their COVID-19 pandemic experiences and information-seeking behaviors by telephone. Interviews and surveys were conducted from June 17, 2020, to November 24, 2020. ANALYTICAL APPROACH: Qualitative themes were identified using thematic analysis. Frequencies were calculated to assess levels of depression and anxiety using the Patient Health Questionnaire for Depression and Anxiety and types of information-seeking behaviors. RESULTS: 7 themes and 16 subthemes emerged. Themes of commonly reported stressors include postponing medical visits; decreased accessibility of getting medication; difficulty in receiving up-to-date, patient-focused health information and dialysis supplies; and delays in medical appointments. Other stressors include losses of health insurance and income, and increased vigilance in behaviors to avoid contracting COVID-19. 15 participants had moderate to severe anxiety and depression symptoms and reported more frequent and severe panic attacks after the COVID-19 pandemic. Participants sought emotional support from family, friends, and faith communities. They also commonly obtained information from news media and reported needing more transplant-specific updates about COVID-19, and frequent communication from their kidney and transplant specialists. LIMITATIONS: This convenience sample of individuals willing to share their experiences through a telephone hotline may not generalize to all dialysis and transplant patients; stressors related to the COVID-19 pandemic for these patients continue to change. CONCLUSIONS: As the impact of the pandemic continues, needs-based interventions tailored for the kidney and transplant community, including access to mental health resources, education, and support for care transitions, should continue.