How People with COPD Perceive and Communicate Exacerbations: A Multicountry Survey Study
Bibliographic record
Abstract
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 f.franssen@mumc.nlBackground 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
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.002 | 0.011 |
| Meta-epidemiology (narrow) | 0.000 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.001 | 0.000 |
| Scholarly communication | 0.002 | 0.002 |
| Open science | 0.001 | 0.002 |
| Research integrity | 0.002 | 0.002 |
| Insufficient payload (model declined to judge) | 0.002 | 0.001 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".