How People with COPD Perceive and Communicate Exacerbations: A Multicountry Survey Study

Frits ME Franssen,1 Ruth Young,2 Job FM van Boven,3 Michael G Crooks,4 Marie Eckerd,5 Megan Grobert,2 John R Hurst,6 Ann Hutchinson,7 John Linnell,8 Daiana Stolz,9 Tonya Winders,10 Jing Zhang,11 Jad El Khoury,12 Clementine Nordon13 1Department of Respiratory Medicine, Maastricht University Medical Centre, Maastricht, the Netherlands; 2Ipsos Public Affairs, Washington, DC, USA; 3Department of Clinical Pharmacy and Pharmacology, Groningen Research Institute for Asthma and COPD (GRIAC), University Medical Center Groningen, University of Groningen, Groningen, the Netherlands; 4Respiratory Research Group, Hull University Teaching Hospitals NHS Trust, Hull, UK; 5Global Patient Engagement R&I, AstraZeneca, Wilmington, DE, USA; 6UCL Respiratory, University College London, London, UK; 7Hull York Medical School, University of Hull, Hull, UK; 8Patient Author, COPD Foundation, Washington, DC, USA; 9Clinic of Respiratory Medicine and Faculty of Medicine, University of Freiburg, Freiburg, Germany; 10Global Allergy & Airways Patient Platform, Vienna, Austria; 11Department of Pulmonary and Critical Care Medicine, Zhongshan Hospital, Shanghai Medical College, Fudan University, Shanghai, People’s Republic of China; 12Global Medical Affairs – Respiratory, BioPharmaceuticals Medical, AstraZeneca, Cambridge, UK; 13Evidence and Strategy – Respiratory, BioPharmaceuticals Medical, AstraZeneca, Cambridge, UKCorrespondence: Frits ME Franssen, Maastricht University Medical Centre, P. Debyelaan 25, 6229 HX, Maastricht, the Netherlands, Tel +31 43-3875044, Email [email protected] and Objective: Exacerbations negatively impact quality of life of people living with chronic obstructive pulmonary disease (COPD) and can accelerate disease progression. Studies suggest that patients find it difficult to recognize exacerbations and, therefore, under-report exacerbations. We aimed to understand how people living with COPD perceive and communicate their experiences of exacerbations.Methods: A cross-sectional survey including one open-ended question was developed using a targeted literature review, with input from patients and clinicians. People diagnosed with COPD were recruited from online consumer research panels in Brazil, China, France, Spain, UK, and USA and completed the survey. Responses were described overall and in specific subgroups; thematic analysis was used for the open-ended question.Results: Of 857 respondents (median age 58 years; 50.5% male), 623 (72.7%) reported daily shortness of breath; 417 (48.7%) that daily symptoms changed “a little”. In the open-ended question, exacerbations were described through a narrative lens detailing subjective experiences of symptoms, their management, potential causes, and emotions felt during exacerbations, with no single preferred term. In the 671 (78.3%) respondents who reported ever having an exacerbation, these were identified as symptoms being “worse than usual” (52.8%) or because respondents had “more trouble than usual with daily activities” (50.1%).Conclusion: While people living with COPD report confidence in their ability to identify exacerbations, there is a disconnect between their experience of exacerbations and the language and definitions used in clinical practice. A discussion guide emphasizing the use of plain language could improve communication between healthcare providers and patients.Keywords: chronic obstructive pulmonary disease, cough, quality of life, observational, symptoms