A PROCESS FOR DEVELOPING A PATIENT-CENTERED CONCEPTUAL FRAMEWORK FOR DYSPNEA AND RELATED FUNCTIONAL LIMITATIONS IN COPD
Author(s)
Susan F. Anton, MPH, DrPH, Director1, David E Victorson, PhD, Research Scientist2, David Cella, PhD, Professor and Director2, Alan Hamilton, PhD, Therapeutic Area Director3, Jane L Langan, MA, Research Associate41Boehringer-Ingelheim, Ridgefield, CT, USA; 2 Northwestern University Feinberg School of Medicine/Evanston Northwestern Healthcare, Evanston, IL, USA; 3 Boehringer Ingelheim (Canada) Ltd, Burlington, ON, Canada; 4 Evanston Northwestern Healthcare, Evanston, IL, USA
OBJECTIVES: To establish a conceptual framework that can be used to guide the development of a new measure of patient-reported dyspnea, including its impact upon valued activities. METHODS: We identified key concepts through individual interviews with COPD patients (n=15), reconciliation with scientific literature and expert input (n=16), and “think aloud” interviews with COPD patients (n=10). RESULTS: Thematic analysis of patient input suggested five components of the dyspnea experience: breathlessness, fatigue, activity modification, activity limitation, and emotional response. Two major influences on dyspnea were described as individual exertion and exposure to environmental factors. Patients acknowledged a sense of dyspnea-related fear, and reported distress over its impact on health and activity limitation. They emphasized coping via behavioral strategies and medication and reported effects of dyspnea on stopping or scaling back activities, taking more time to do things, and using adaptive measures or equipment. No existing model of dyspnea in COPD incorporated all of these concepts elucidated by patients. We therefore used Wilson & Cleary's (1995) general model to develop a dyspnea-specific framework, using expert input and available literature. In this framework, the most proximal of endpoints (dyspnea symptoms) can impair function, and be mediated by personal and environmental factors. CONCLUSION: Patient input was systematically used to develop a comprehensive conceptual framework for measurement of dyspnea and related functional limitations.
Conference/Value in Health Info
2007-10, ISPOR Europe 2007, Dublin, Ireland
Value in Health, Vol. 10, No. 6 (November/December 2007)
Code
PRS18
Topic
Methodological & Statistical Research
Topic Subcategory
PRO & Related Methods
Disease
Respiratory-Related Disorders
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