Stressors and Information-Seeking by Dialysis and Transplant Patients During COVID-19, Reported on a Telephone...

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.

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.

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.

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.

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.

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.

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.