Patient perspectives on knowledge gaps in hypersensitivity pneumonitis.

Autor:	Varadarajan J; Division of Pulmonary and Critical Care medicine, Weill Cornell Medical College, New York, New York, USA., Edgar A; Division of Pulmonary and Critical Care medicine, Weill Cornell Medical College, New York, New York, USA., O'Beirne R; The University of Alabama at Birmingham Heersink School of Medicine, Birmingham, Alabama, USA., Paul TK; University of Virginia School of Medicine, Charlottesville, Virginia, USA., Krishnan JK; Division of Pulmonary and Critical Care medicine, Weill Cornell Medical College, New York, New York, USA., Kaner R; Division of Pulmonary and Critical Care medicine, Weill Cornell Medical College, New York, New York, USA.; Institute of Genetic Medicine, Weill Cornell Medical College, New York, New York, USA., Safford MM; Division of General Internal Medicine, Weill Cornell Medical College, New York, New York, USA., Aronson K; Division of Pulmonary and Critical Care medicine, Weill Cornell Medical College, New York, New York, USA kia9010@med.cornell.edu.
Jazyk:	angličtina
Zdroj:	BMJ open respiratory research [BMJ Open Respir Res] 2024 Oct 22; Vol. 11 (1). Date of Electronic Publication: 2024 Oct 22.
DOI:	10.1136/bmjresp-2024-002487
Abstrakt:	Objectives: Responding to prior research findings that lack of knowledge about their disease impacted patients' quality of life, the objective of this study was to identify and prioritise information gaps about hypersensitivity pneumonitis (HP) from the perspective of patients living with the disease. Design: This study used the nominal group technique, a semiquantitative and qualitative method to identify stakeholder priorities. Setting: Virtual group sessions were conducted in an academic medical centre in the USA. Participants: 21 patients diagnosed with HP participated in this study. Participants were eligible if they spoke English and had access to the internet and were excluded if they had cognitive impairment. Results: The patient statements were grouped into seven themes that were prioritised by participants in the following order: (1) natural history and prognosis; (2) current treatment options and therapeutic research; (3) epidemiology and aetiology of HP; (4) living well with HP; (5) origin and management of symptoms; (6) identifying and mitigating exposures and (7) methods of educating patients, clinicians and others about HP. Conclusions: This study provides an understanding of patients' prioritisation of knowledge gaps in HP to inform targeted educational interventions and provide avenues for future research. Competing Interests: Competing interests: KA reports funding from the NHLBI, Scleroderma Foundation, Stony-Wold Herbert Fund and American Lung Association, medical writing from Genentech for a different manuscript and sits on the scientific review committee for the Pulmonary Fibrosis Foundation. TKP reports funding from the Duke University/Boehringer Ingelheim–ILD-PRO and IPF-PRO Registries, University of Michigan (NHLBINIH) PRECISIONS clinical trial and University of Pittsburgh (NHLBINIH) CLEANUP-IPF clinical trial. JKK reports funding from the American Thoracic Society, Weill Cornell Medicine Research Assistant for Primary Parents Award, Deans Diversity Award, Fund for the Future Award, NIH T32HL134629 and COMMUNITY centre Investigator Development Core, consulting fees for advisory board of Verona Pharma and medical writing/receipt of gifts from Novartis, Boehringer-Ingelheim, GSK, Donna Redel Research Fund and Thomas King Fellowship. RK reports funding from the NIH, Boehringer Ingelheim, Cheisi, CSL Behring, Genentech, Respivant, Toray, Bellerophon and the US Department of Defense, royalties or licenses from UptoDate, payment or honoraria from Boehringer Ingelheim, Genentech, Vindico and France Foundation, support for travel from United Therapeutics and Boehringer Ingelheim, participation on a DSMB with Puretech, Pliant, AvalynPharma, Boehringer Ingelheim, Genentech, United Therapeutics, Verona Pharma, Galapagos and AstraZeneca, leadership roles in the Pulmonary Wellness Foundation and Stony-Wold Foundation, stock in Doximity and Air Cycle Systems, and receipt of medical writing or gifts from Boehringer Ingelheim, Genentech, Galapagos, and AztraZeneca. MMS is a member of the MESA OSMB, is the Chief Scientific Officer of MedExplain and owns stock in MedExplain. JV, AE and RO'B report no conflicts related to this work. (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)
Databáze:	MEDLINE
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