Development of the Advancing the Patient Experience in COPD Registry: A Modified Delphi Study

Chelsea L Edwards, Alan G Kaplan, Barbara P Make, Janwillem W H Kocks, Lakmini Bulathsinhala, Victoria A Carter, Ku-Lang Chang, Chester Fox, Gokul Gopalan, MeiLan K Han, Maja Kruszyk, Chantal E Le Lievre, Cathy Mahle, Barry Make, Wilson D Pace, Chris Price, Asif Shaikh, Neil Skolnik, David B Price

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Background: Chronic obstructive pulmonary disease (COPD) is commonly managed by family physicians, but little is known about specifics of management and how this may be improved. The Advancing the Patient Experience in COPD (APEX COPD) registry will be the first U.S. primary care, health system-based registry following patients diagnosed with COPD longitudinally, using a standardized set of variables to investigate how patients are managed in real life and assess outcomes of various management strategies.

Objective: Gaining expert consensus on a standardized list of variables to capture in the APEX COPD registry.

Methods: A modified, Delphi process was used to reach consensus on which data to collect in the registry from electronic health records (EHRs), patient-reported information (PRI) and patient-reported outcomes (PRO), and by physicians during subsequent office visits. The Delphi panel comprised 14 primary care and specialty COPD experts from the United States and internationally. The process consisted of 3 iterative rounds. Responses were collected electronically.

Results: Of the initial 195 variables considered, consensus was reached to include up to 115 EHR variables, 34 PRI/PRO variables and 5 office-visit variables in the APEX COPD registry. These should include information on symptom burden, diagnosis, COPD exacerbations, lung function, quality of life, comorbidities, smoking status/history, treatment specifics (including side effects), inhaler management, and patient education/self-management.

Conclusion: COPD experts agreed upon the core variables to collect from EHR data and from patients to populate the APEX COPD registry. Data will eventually be integrated, standardized and stored in the APEX COPD database and used for approved COPD-related research.

Original languageEnglish
Article numberjcopdf.2020.0154.
Number of pages17
JournalChronic Obstructive Pulmonary Diseases: Journal of the COPD Foundatio
Issue number1
Early online date24-Nov-2020
Publication statusPublished - 2020

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