Patient-reported Outcomes to Assess Dyspnea in Connective Tissue Diseases, Interstitial Lung Disease and Pulmonary Hypertension, a Systematic Literature Review of Measurement Properties

Jacqueline Lemmers¹, Madelon Vonk² and Els Ende, van den³, ¹Radboud University Medical Centre Nijmegen, Nijmegen, Netherlands, ²Department of Rheumatology, Radboud University Medical Center, Nijmegen, Netherlands, ³Radboudumc, Nijmegen, Netherlands

Meeting: ACR Convergence 2022

Keywords: interstitial lung disease, Outcome measures, Patient reported outcomes, pulmonary, Systemic sclerosis

Session Information

Date: Saturday, November 12, 2022

Title: Patient Outcomes, Preferences, and Attitudes Poster I

Session Type: Poster Session A

Session Time: 1:00PM-3:00PM

Background/Purpose: This COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN)-based systematic review aims to identify and summarize the quality of measurement properties of dyspnea-specific patient reported outcome measures (PROMS), for patients with interstitial lung disease (ILD), pulmonary hypertension (PH) or connective-tissue diseases (CTD).

Methods: A systematic literature search in PUBMED and EMBASE, was last updated in March 2022 to identify publications evaluating ≥1 measurement properties on dyspnea-specific PROMS in our target population. Based on COMIN analysis and the Grading of Recommendations Assessment Development and Evaluation (GRADE) approach, overall rating and level of evidence for identified measurement properties of included PROMS was assessed, and used to formulate recommendations.

Results: We identified 26 publications on 10 PROMS. The Dyspnea-12 (D12), EXACT-respiratory Symptoms-IPF- breathlessness subscale (ERS-IPF-B) and King’s Brief Interstitial Lung Disease Health Status Questionnaire – breathlessness and activities subscale (K-BILD-B) had high quality evidence for sufficient internal consistency, without high quality evidence of insufficient measurement properties, and can therefore be recommended for use. The University of California San Diego Shortness of Breath Questionnaire (UCSD-SOBQ) showed insufficient responsiveness in this target population. Most PROMS in this systematic review have moderate or low quality evidence on construct validity and responsiveness.

Conclusion: The K-BILD-B, despite lacking evidence on several important domains, is currently considered the best performing PROM. The UCSD-SOBQ is not recommended for use, due to high quality evidence on insufficient responsiveness in this population.

Disclosures: J. Lemmers, None; M. Vonk, Boehringer Ingelheim, Ferrer, Galapagos, Janssen, Merck/MSD, Corbus, EUSTAR; E. Ende, van den, None.

To cite this abstract in AMA style:

Lemmers J, Vonk M, Ende, van den E. Patient-reported Outcomes to Assess Dyspnea in Connective Tissue Diseases, Interstitial Lung Disease and Pulmonary Hypertension, a Systematic Literature Review of Measurement Properties [abstract]. Arthritis Rheumatol. 2022; 74 (suppl 9). https://acrabstracts.org/abstract/patient-reported-outcomes-to-assess-dyspnea-in-connective-tissue-diseases-interstitial-lung-disease-and-pulmonary-hypertension-a-systematic-literature-review-of-measurement-properties/. Accessed .

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