Search

Objective: This COnsensus-based Standards for the selection of health measurement INstruments (COSMIN)-based systematic review aims to identify and summarise the quality of measurement properties of dyspnoea-specific patient-reported outcome measures (PROMs) for patients with interstitial lung disease (ILD), pulmonary hypertension (PH) or connective tissue diseases (CTDs). Methods and results: Relevant articles in PubMed and Embase were screened. Based on COSMIN analysis and the Grading of Recommendations, Assessment, Development and Evaluation approach, overall rating and level of evidence were assessed to formulate recommendations. We identified 26 publications on 10 PROMs. For patients with ILD, including CTD-associated ILD, nine PROMs were evaluated, of which the Dyspnea-12 (D12), EXACT-Respiratory Symptoms Idiopathic Pulmonary Fibrosis Breathlessness subscale (ERS-IPF-B), King's Brief Interstitial Lung Disease Health Status Questionnaire breathlessness and activities subscale (KBILD-B) and the University of California San Diego Shortness of Breath Questionnaire (UCSD-SOBQ) had high-quality evidence for sufficient internal consistency, without high-quality evidence of insufficient measurement properties. We reached this same conclusion regarding the D12 for use in patients with PH, including CTD-associated PH. Most PROMs in this systematic review have moderate- or low-quality evidence on construct validity and responsiveness. Conclusion: Four dyspnoea-specific PROMs, D12, ERS-IPF-B, KBILD-B and UCSD-SOBQ, can be recommended for use in patients with ILD, including CTD-associated ILD. Of these four, the D12, despite the limited evidence and the lack of evidence on several important domains, is also suitable for use in patients with PH, including CTD-associated PH. [ABSTRACT FROM AUTHOR]

Objective: It is generally unknown how the attitudes and beliefs of health care professionals (HCPs) might affect the attitudes, beliefs, and medication-taking behavior of patients with rheumatoid arthritis (RA). This study aims 1) to examine the attitudes, health-related associations (both implicit and explicit), and beliefs of HCPs about conventional disease-modifying antirheumatic drugs, and 2) to assess whether these attitudes, health-related associations, and beliefs of HCPs are associated with those of their patients, with their patients' medication-taking behavior, and disease activity.Methods: HCPs were recruited from 2 centers that specialized in rheumatology across The Netherlands, and patient recruitment followed. In this observational study, implicit outcomes were measured with single-category implicit association tests, whereas explicit outcomes were measured with a bipolar evaluative adjective scale and the Beliefs About Medicines Questionnaire-Specific. Spearman's rank correlations were used to describe correlations between implicit and explicit measures of the attitudes of HCPs. Multilevel, mixed-effects linear models were used to examine the association of HCP-related characteristics, including the implicit and explicit outcomes of HCPs, with those of their patients, their medication-taking behaviors, and disease activity.Results: Of the 1,659 initially invited patients, 254 patients with RA (mean age 62.8 years, mean disease duration 11.8 years, and 68.1% of the patients were female) who were treated by 26 different HCPs agreed to participate in this study. The characteristics, attitudes, health-related associations, and beliefs about medicines of HCPs were not significantly associated with those of their patients, nor with their medication-taking behaviors or disease activity scores.Conclusion: This study demonstrated that the attitudes, health-related associations (as measured both implicitly and explicitly), and beliefs of HCPs were not significantly associated with the attitudes, beliefs, medication-taking behavior, and disease activity of patients with RA. [ABSTRACT FROM AUTHOR]

Objective: To collect and prioritize the frequently asked questions (FAQs) that patients with hip or knee osteoarthritis (OA) and health care professionals consider to be the most important; to identify informational needs that go beyond guideline recommendations.Methods: FAQs were collected among health care professionals and from the arthritis helpline of the Dutch Arthritis Foundation. After deleting overlapping FAQs, the remaining FAQs were prioritized by patients and health care professionals using a maximum difference scaling method. A hierarchical Bayesian method was used to calculate relative importance scores. Differences between health care professionals and patients were analyzed using independent t-tests.Results: A total of 28 health care professionals and the arthritis helpline provided 192 FAQs. After deleting overlapping FAQs, 60 FAQs were prioritized by 94 patients (57 [60.6%] women, mean age 67.3 years) and 122 health care professionals (67 [54.9%] women, mean age 45.7 years). The FAQ "What can I do myself to decrease symptoms and to prevent the OA from getting worse?" was prioritized as the most important by both patients and professionals. FAQs that were highly prioritized by patients but significantly different from professionals were more directed toward treatment options offered by health care professionals, whereas highly prioritized FAQs of professionals were more often focused on treatment options involving self-management.Conclusion: The health care professionals' perspective on informational needs differs from that of OA patients. These differences are important to address in order to achieve more active involvement of patients in their own treatment process. [ABSTRACT FROM AUTHOR]