A NOVEL CONCEPTUAL MODEL OF CYSTIC FIBROSIS BASED ON QUALITATIVE PATIENT RESEARCH
Author(s)
Willgoss TG1, Trigg A1, Meysner S1, Kitchen H1, Humphrey L1, Blankenburg M2
1Abacus International, Manchester, UK, 2Bayer HealthCare Pharmaceuticals, Berlin, Germany
OBJECTIVES: Despite the wealth of qualitative studies exploring the experiences of patients with cystic fibrosis (CF), currently no conceptual model of CF exists. Conceptual models are a valuable way to communicate relevant patient-centered concepts and the relationships between them, and form an important framework for understanding what to measure in clinical trials and practice. This study aimed to use patient-derived qualitative insights to develop a conceptual model of CF. METHODS: A targeted literature review was performed to identify qualitative studies describing the lived-experience of patients (aged ≥ 6 years) with CF. CF social media forums were also reviewed to supplement the published data by providing patient-derived quotes where none existed in the literature. Data were coded using Atlas.Ti software, and analysed to develop the conceptual model. Where possible, any differences in concepts according to age were identified. RESULTS: CONCLUSIONS: To our knowledge, this is the first patient-centered conceptual model for CF, reflecting the symptom and impact burdens of CF on patients’ lives as identified through qualitative patient-derived data. As such, this model provides an important critical framework to assess the conceptual relevance and patient-centeredness of outcome assessments ahead of selection for future clinical trials and clinical practice.
Conference/Value in Health Info
2015-05, ISPOR 2015, Philadelphia, PA, USA
Value in Health, Vol. 18, No. 3 (May 2015)
Code
PND53
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
Rare and Orphan Diseases