• Teri Browne, Shamika Jones, Ashley N Cabacungan, Katina Lang-Lindsey, Lana Schmidt, George Jackson, Dori Schatell, Kelli Collins Damron, Patti L Ephraim, Felicia Hill-Briggs, Shakur Bolden, Amy Swoboda, Suzanne Ruff, Patty Danielson, Diane Littlewood, Dale Singer, Stephanie Stewart, Brandy Vinson, Diana Clynes, Jamie A Green, Tara S Strigo, and L Ebony Boulware.
• College of Social Work, University of South Carolina, Columbia, SC, USA.
• J Gen Intern Med. 2022 Apr 1; 37 (Suppl 1): 64-72.

BackgroundLittle is known about the impact of COVID-19 on patient, family member, and stakeholder patient-centered outcomes research engagement.ObjectiveTo answer the research questions: (1) What is the impact of COVID-19 on the lives of patients with kidney disease and their families? (2) What is the impact of COVID-19 on research engagement for patient and family member research team members who are themselves at very high risk for poor COVID-19 outcomes? and (3) How can we help patients, family members, and stakeholder team members engage in research during COVID-19?DesignWe conducted virtual semi-structured interviews with patient and family member co-investigators and kidney disease stakeholders from the PREPARE NOW study during November 2020. The interview guide included questions about participants' experiences with the impact of COVID-19 on research engagement.ParticipantsSeven patient and family member co-investigators and eight kidney disease stakeholders involved in a kidney disease patient-centered outcomes research project participated in the interviews, data analysis, and writing this manuscript.ApproachWe used a content analysis approach and identified the main themes using an inductive process.Key ResultsRespondents reported three main ways that COVID-19 has impacted their lives: emotional impact, changing behaviors, and changes in health care delivery. The majority of respondents reported no negative impact of COVID-19 on their ability to engage in this research project. Suggestions for patient-centered outcomes research during COVID-19 and other emergencies include virtual research activities; active engagement; and promoting trust, honesty, transparency, and authenticity.ConclusionsCOVID-19 has had a significant negative impact on patient, family member, and stakeholder research team members; however, this has not resulted in less research engagement.Trial RegistrationClinicaltrials.gov NCT02722382.© 2021. The Author(s).

11 keywords...

hide…