Journal article
Essential Components of an Interstitial Lung Disease Clinic Results From a Delphi Survey and Patient Focus Group Analysis
Chest, Vol.159(4), pp.1517-1530
04/01/2021
DOI: 10.1016/j.chest.2020.09.256
PMCID: PMC7534733
PMID: 33031832
Abstract
BACKGROUND: Management of patients with interstitial lung disease (ILD) requires sub specialized, comprehensive, multidisciplinary care. The Pulmonary Fibrosis Foundation established the Care Center Network (CCN) in 2013 with identified criteria to become a designated CCN site. Despite these criteria, the essential components of an ILD clinic remain unknown.
RESEARCH QUESTIONS: How are ILD clinics within the CCN structured? What are the essential components of an ILD clinic according to ILD physician experts, patients, and caregivers?
STUDY DESIGN AND METHODS: This study had three components. First, all 68 CCN sites were surveyed to determine the characteristics of their current ILD clinics. Second, an online, three round modified Delphi survey was conducted between October and December 2019 with 48 ILD experts participating in total. Items for round 1 were generated using expert interviews. During rounds 1 and 2, experts rated the importance of each item on a 5-point Likert scale. The a priori threshold for consensus was more than 75% of experts rating an item as important or very important. In round 3, experts graded items that met consensus and ranked items deemed essential for an ILD clinic. Third, ILD patient and caregiver focus groups were conducted and analyzed for content to determine their perspectives of an ideal ILD clinic.
RESULTS: Forty items across four categories (members, infrastructure, resources, and multidisciplinary conference) achieved consensus as essential to an ILD clinic. Patient and caregiver focus groups identified three major themes: comprehensive, patient-centered medical care; expanded access to care; and comprehensive support for living and coping with ILD.
INTERPRETATION: The essential components of an ILD clinic are well-aligned between physician experts and patients. Future research can use these findings to evaluate the impact of these components on patient outcomes and to inform best practices for ILD clinics throughout the world.
Details
- Title: Subtitle
- Essential Components of an Interstitial Lung Disease Clinic Results From a Delphi Survey and Patient Focus Group Analysis
- Creators
- Bridget A. Graney - University of Colorado Anschutz Medical CampusChristophe He - Université de SherbrookeMichael Marll - University of Colorado Anschutz Medical CampusScott Matson - University of Colorado Anschutz Medical CampusPauline Bianchi - Pulm Fibrosis Fdn, Chicago, IL 60611 USAGregory P. Cosgrove - Pulm Fibrosis Fdn, Chicago, IL 60611 USAJoyce S. Lee - University of Colorado Anschutz Medical CampusPFF CCN Delphi Collaborators
- Contributors
- Nabeel Hamzeh (Contributor) - University of Iowa, Pulmonary, Critical Care, and Occupational Medicine
- Resource Type
- Journal article
- Publication Details
- Chest, Vol.159(4), pp.1517-1530
- Publisher
- Elsevier
- DOI
- 10.1016/j.chest.2020.09.256
- PMID
- 33031832
- PMCID
- PMC7534733
- ISSN
- 0012-3692
- eISSN
- 1931-3543
- Number of pages
- 14
- Grant note
- HL138131 / National Heart, Lung, and Blood Institute of the National Institutes of Health; United States Department of Health & Human Services; National Institutes of Health (NIH) - USA; NIH National Heart Lung & Blood Institute (NHLBI)
- Language
- English
- Date published
- 04/01/2021
- Academic Unit
- Pulmonary, Critical Care, and Occupational Medicine; Internal Medicine
- Record Identifier
- 9984359807002771
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