Developing a patient and caregiver driven research agenda related to mental health in the context of chronic obstructive pulmonary disease (copd) and covid-19

Rationale: Individuals with COPD are usually older and have co-morbidities besides COPD, increasing risk of adverse outcomes from COVID-19 (1,2). To lessen risks, those with COPD are practicing social distancing from loved ones and society, living in a culture of fear, anxiety and isolation. To address this burden and understand the pandemic's impact on concerns about health and well-being of people with COPD, the COPD Foundation (COPDF) developed a survey to identify issues among members of the COPDF Patient-Powered Research Network (PPRN) then asked a broader group to prioritize those issues for a COPD/COVID-19 related mentalhealth research agenda to share with researchers and funders.Methods: Using information published in medical literature and social media, we developed COPD & Coping with COVID Pandemic Survey for the COPD PPRN. The survey was divided into domains: Activities, Living Situations, Healthcare Use/Self-Management, Getting/Interpreting Data on Risk, Safety and Suggested Actions, New Norm, Finances, and Coping Strategies/Abilities, with potential problems and concerns under each of the domains. The list of domains and questions was reviewed, modified and enhanced by our patient co-investigators. 724 members of the COPD PPRN selected issues they found not at all bothersome to very bothersome. We analyzed results to identify 25 issues considered bothersome in causing worry, concern, or anxiety. Voting on COPD360Social resulted in over 4,500 votes cast between 9/28-10/20/2020, prioritizing the 25 issues for the research agenda.Results: The prioritized items for the research agenda can be summarized into three categories: a.) Short and long-term impact of anxiety, worry or concerns surrounding doing and meeting basic needs such as activity, self-care and management and support and interactions with family and friends;b.) Re-establishing trust in health care-related information;c.) Short and long-term impact of delays in health care and health related prevention services. Table 1 lists the 12 items and their priority scores.Conclusions: This patient prioritized research agenda should help guide the work of individual researchers related to COVID and mental health in chronic disease populations and selection of high priority research areas for funders.