Management of Cystic Fibrosis during COVID-19: Patient Reported Outcomes based remote follow-up among CF patients in Denmark – A feasibility study

ABSTRACT Background Patients with cystic fibrosis (CF) are considered to be a COVID-19 risk group. In March 2020, a fast-track Patient Reported Outcome (PRO) solution was developed to ensure access to CF care without in-person hospital visits. This study investigated the feasibility of urgently replacing in-person appointments with remote monitoring using telephone consultations combined with PROs. We investigated patients and health care professionals' (HCPs) acceptance, recruitment rate, response rate, missing data, and attrition. Methods We included adult CF patients from the Department of Infectious Diseases at Aarhus University Hospital, Denmark between April and June 2020. Patients filled in a disease-specific questionnaire including relevant clinical aspects, performed home spirometry, and sent in a sputum sample before a scheduled telephone consultation. Twelve participants who completed the questionnaire and had a telephone consultation were interviewed. Three physicians and three nurses from the CF clinical team participated in a focus group interview. Results Eighty patients were recruited for remote monitoring, and 41 patients filled in at least one questionnaire. Overall, both patients and HCPs found remote monitoring and use of PROs acceptable and useful. Patients experienced greater flexibility and found the questionnaire relevant and understandable but pointed out the need for items regarding mental health status and more adequate information about changes in follow-up and workflow. Conclusion Urgent reorganization of outpatient follow-up among CF patients due to COVID-19 was feasible in routine clinical practice. However, patient involvement should be a future point of attention to ensure a sustainable telehealth PRO solution.