1. World Health Organization (WHO) International Classification of Functioning, Disability and Health (ICF) Core Set Development for Interstitial Lung Disease.
- Author
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Saketkoo, Lesley, Saketkoo, Lesley, Escorpizo, Reuben, Varga, Janos, Keen, Kevin, Fligelstone, Kim, Birring, Surinder, Alexanderson, Helene, Pettersson, Henrik, Chaudhry, Humza, Poole, Janet, Regardt, Malin, LeSage, Daphne, Sarver, Catherine, Lanario, Joseph, Renzoni, Elisabetta, Scholand, Mary, Lammi, Matthew, Kowal-Bielecka, Otylia, Distler, Oliver, Frech, Tracy, Shapiro, Lee, Varju, Cecilia, Volkmann, Elizabeth, Bernstein, Elana, Drent, Marjolein, Obi, Ogugua, Patterson, Karen, Russell, Anne-Marie, Saketkoo, Lesley, Saketkoo, Lesley, Escorpizo, Reuben, Varga, Janos, Keen, Kevin, Fligelstone, Kim, Birring, Surinder, Alexanderson, Helene, Pettersson, Henrik, Chaudhry, Humza, Poole, Janet, Regardt, Malin, LeSage, Daphne, Sarver, Catherine, Lanario, Joseph, Renzoni, Elisabetta, Scholand, Mary, Lammi, Matthew, Kowal-Bielecka, Otylia, Distler, Oliver, Frech, Tracy, Shapiro, Lee, Varju, Cecilia, Volkmann, Elizabeth, Bernstein, Elana, Drent, Marjolein, Obi, Ogugua, Patterson, Karen, and Russell, Anne-Marie
- Abstract
Background: The World Health Organization (WHO) introduced the International Classification of Functioning, Disability, and Health (ICF) as a scientific method of disability data collection comprised of >1,200 categories describing the spectrum of impairment types (functional, symptoms-based and anatomical) under the bio-psycho-social model with consideration of environmental and personal factors (pf). ICF Core Sets and ICF Checklists are streamlined disease-specific resources for clinical use, service provision, and for use in health economics and health policy. ICF can disclose strengths and weaknesses across multiple patient-reported outcome measures (PROMs) and help consolidate best-fitting question-items from multiple PROMs. Interstitial lung diseases (ILDs), are generally progressive, with restrictive physiology sometimes occurring in the context of multi-organ autoimmunity/inflammatory conditions such as connective tissue diseases (CTDs). In spite of significant associated morbidity and potential disability, ILD has yet to be linked to the ICF. Methods: Each instrument and their question-items within the consensus-recommended core sets for clinical trials in ILD were deconstructed to single concept units, and then linked per updated ICF linkage rules. Inter-linker agreement was established. Three additional subsequently validated measures were also included. Results: One-hundred-eleven ICF categories were identified for ten PROMs and three traditional objective measures that were amenable to ICF linkage. The proportion of agreement ranged from 0.79 (95% CI: 0.62, 0.91) to 0.93 (0.76, 0.99) with the overall proportion of inter-linker agreement being very high 0.86 (0.82, 0.89) for the initial instruments, with 94-100% for the three additional PROMs. Thirty-four new Personal Factors emerged to capture disease-specific qualities not elsewhere described in ICF, e.g. pf_embarrassed by cough or pf_panic/afraid when cant get a breath. Conclusion: This first known
- Published
- 2022