Chelsea L. Edwards, PhD; Alan G. Kaplan, MD, CCFP(EM) FCFP; Barbara P. Yawn, MD, MSc, MSPH; Janwillem W. H. Kocks, MD, PhD; Lakmini Bulathsinhala, MPH; Victoria A. Carter, BSc; Ku-Lang Chang, MD, FAAFP; Chester Fox, MD, FAAFP; Gokul Gopalan, MD; MeiLan K. Han, MD; Maja Kruszyk, BEng; Chantal E. Le Lievre, BPH; Cathy Mahle, PhD, MBA; Barry Make, MD; Wilson D. Pace, MD; Chris Price, LLB; Asif Shaikh, MD, MPH; Neil Skolnik, MD; David B. Price, FRCGP
Although both national and regional COPD registries and patient cohorts already exist in the United States, none are based in primary care. The Advancing the Patient Experience in COPD registry is the first primary care COPD registry in the United States. Its data, or information, will be standardized and stored in a database, and used to understand:
- the natural progression of COPD in individuals over time,
- how patients are managed in real-life and
- clinical, safety and cost-effectiveness of current COPD treatments in primary care across the United States.
We conducted a type of study known as a “modified Delphi study” to reach expert agreement on a standardized list of demographic (age, sex, race, etc) disease monitoring (symptoms, diagnosis, etc), and treatment (inhaler, medicines, etc) variables to establish the Advancing the Patient Experience in COPD registry.
Of the originally identified variables, 115 were selected from existing electronic health records, 34 variables from patient questionnaires, and 5 variables will be collected during office visits. These variables include information on COPD diagnosis, exacerbations, symptoms, lung function, quality-of-life, comorbidities, smoking history, treatment, inhaler management (including inhaler technique), and education/self-management. They were selected for their clinical relevance and usefulness to family doctors and patients, and for feasibility, familiarity, and practicality of collection.