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dc.contributor.authorSaketkoo, LA
dc.contributor.authorEscorpizo, R
dc.contributor.authorVarga, J
dc.contributor.authorKeen, KJ
dc.contributor.authorFligelstone, K
dc.contributor.authorBirring, SS
dc.contributor.authorAlexanderson, H
dc.contributor.authorPettersson, H
dc.contributor.authorChaudhry, HA
dc.contributor.authorPoole, JL
dc.contributor.authorRegardt, M
dc.contributor.authorLeSage, D
dc.contributor.authorSarver, C
dc.contributor.authorLanario, J
dc.contributor.authorRenzoni, E
dc.contributor.authorScholand, MB
dc.contributor.authorLammi, MR
dc.contributor.authorKowal-Bielecka, O
dc.contributor.authorDistler, O
dc.contributor.authorFrech, T
dc.contributor.authorShapiro, L
dc.contributor.authorVarju, C
dc.contributor.authorVolkmann, ER
dc.contributor.authorBernstein, EJ
dc.contributor.authorDrent, M
dc.contributor.authorNdili, O
dc.contributor.authorPatterson, KC
dc.contributor.authorRussell, A-M
dc.date.accessioned2022-11-07T11:09:11Z
dc.date.issued2022-10-14
dc.date.updated2022-11-07T07:46:28Z
dc.description.abstractBackground: 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 can’t get a breath’. Conclusion: This first known effort in ICF linkage of ILD has provided important revelations on the current utility of the ICF in lung disease. Results have indicated areas for meaningful assessment of ICF descriptors for lung impairment. The mapping across PROMs provides insight into possibilities of developing more streamline and precise instrumentation. Finally, familiarity with the ICF in ILD may enable clinicians to experience a smoother transition with the imminent harmonization of ICD and ICF, ICD-11.en_GB
dc.format.extent979788-
dc.identifier.citationVol. 13, article 979788en_GB
dc.identifier.doihttps://doi.org/10.3389/fphar.2022.979788
dc.identifier.urihttp://hdl.handle.net/10871/131668
dc.identifierORCID: 0000-0002-0468-3537 (Russell, Anne-Marie)
dc.identifierScopusID: 7402735889 (Russell, Anne-Marie)
dc.identifierResearcherID: AAS-6505-2020 (Russell, Anne-Marie)
dc.language.isoenen_GB
dc.publisherFrontiers Mediaen_GB
dc.rights© 2022 Saketkoo, Escorpizo, Varga, Keen, Fligelstone, Birring, Alexanderson, Pettersson, Chaudhry, Poole, Regardt, LeSage, Sarver, Lanario, Renzoni, Scholand, Lammi, Kowal-Bielecka, Distler, Frech, Shapiro, Varju, Volkmann, Bernstein, Drent, Obi, Patterson, Russell and The Global Fellowship on Rehabilitation and Exercise in Systemic Sclerosis (G-FoRSS). This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.en_GB
dc.subjectfibrosisen_GB
dc.subjectICD-11en_GB
dc.subjectpatient-reported outcomesen_GB
dc.subjectconnective tissueen_GB
dc.subjectcoughen_GB
dc.subjectCTD-ILDen_GB
dc.titleWorld Health Organization (WHO) International Classification of Functioning, Disability and Health (ICF) Core Set Development for Interstitial Lung Diseaseen_GB
dc.typeArticleen_GB
dc.date.available2022-11-07T11:09:11Z
dc.identifier.issn1663-9812
dc.descriptionThis is the final version. Available on open access from Frontiers Media via the DOI in this recorden_GB
dc.descriptionData availability statement: The original contributions presented in the study are included in the article/Supplementary Material. Further inquiries can be directed to the corresponding authors.en_GB
dc.identifier.eissn1663-9812
dc.identifier.journalFrontiers in Pharmacologyen_GB
dc.relation.ispartofFrontiers in Pharmacology, 13
dc.rights.urihttps://creativecommons.org/licenses/by/4.0/en_GB
dcterms.dateAccepted2022-07-13
rioxxterms.versionVoRen_GB
rioxxterms.licenseref.startdate2022-10-14
rioxxterms.typeJournal Article/Reviewen_GB
refterms.dateFCD2022-11-07T11:07:20Z
refterms.versionFCDVoR
refterms.dateFOA2022-11-07T11:09:27Z
refterms.panelAen_GB
refterms.dateFirstOnline2022-10-14


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© 2022 Saketkoo, Escorpizo, Varga, Keen, Fligelstone, Birring, Alexanderson, Pettersson, Chaudhry, Poole, Regardt, LeSage, Sarver, Lanario, Renzoni, Scholand, Lammi, Kowal-Bielecka, Distler, Frech, Shapiro, Varju, Volkmann, Bernstein, Drent, Obi, Patterson, Russell and The Global Fellowship on Rehabilitation and Exercise in Systemic Sclerosis (G-FoRSS). This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
Except where otherwise noted, this item's licence is described as © 2022 Saketkoo, Escorpizo, Varga, Keen, Fligelstone, Birring, Alexanderson, Pettersson, Chaudhry, Poole, Regardt, LeSage, Sarver, Lanario, Renzoni, Scholand, Lammi, Kowal-Bielecka, Distler, Frech, Shapiro, Varju, Volkmann, Bernstein, Drent, Obi, Patterson, Russell and The Global Fellowship on Rehabilitation and Exercise in Systemic Sclerosis (G-FoRSS). This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.