Perceptions of Patients, Caregivers, and Healthcare Providers of Idiopathic Inflammatory Myopathies: An International OMERACT Study (original) (raw)
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The Journal of Rheumatology, 2014
The newly formed Outcome Measures in Rheumatology (OMERACT) Myositis Special Interest Group (SIG) was established to examine patient-reported outcome measures (PROM) in myositis. At OMERACT 11, a literature review of PROM used in the idiopathic inflammatory myopathies (IIM) and other neuromuscular conditions was presented. The group examined in more detail 2 PROM more extensively evaluated in patients with IIM, the Myositis Activities Profile, and the McMaster-Toronto Arthritis Patient Preference Disability Questionnaire, through the OMERACT filter of truth, discrimination, and feasibility. Preliminary results from a qualitative study of patients with myositis regarding their symptoms were discussed that emphasized the range of symptoms experienced: pain, physical tightness/stiffness, fatigue, disease effect on emotional life and relationships, and treatment-related side effects. Following discussion of these results and following additional discussions since OMERACT 11, a research ...
The Journal of rheumatology, 2015
The Outcome Measures in Rheumatology (OMERACT) myositis working group was established to examine patient-reported outcomes (PRO) as well as to validate patient-reported outcome measures (PROM) in myositis. Qualitative studies using focus group interviews and cognitive debriefing of the myositis-specific Myositis Activities Profile (MAP) were used to explore the experience of adults living with polymyositis (PM) and dermatomyositis (DM). Preliminary results underscore the importance of patient input in the development of PROM to ensure content validity. Results from multicenter focus groups indicate the range of symptoms experienced including pain, fatigue, and impaired cognitive function, which are not currently assessed in myositis. Preliminary cognitive debriefing of the MAP indicated that while content was deemed relevant and important, several activities were not included; and that questionnaire construction and wording may benefit from revision. A research agenda was developed ...
The Journal of rheumatology, 2017
To define a set of core patient-reported domains and respective instruments for use in idiopathic inflammatory myopathies (IIM). Previously, we reported a systematic literature review on patient-reported outcomes (PRO) in IIM followed by conducting international focus groups to elicit patient perspectives of myositis symptoms and effects. Based on qualitative content analysis of focus groups, an initial list of 26 candidate domains was constructed. We subsequently conducted an international modified Delphi survey to identify the importance of each of the 26 domains. Participants were asked to rate each domain on a scale of 0-10 (0 = not important, 10 = very important). In this first round of the Delphi survey, 643 patients participated from the United States (n = 543), Sweden (n = 49), and South Korea (n = 51). Of the 26 domains, 19 (73%) were rated of high importance (≥ 7/10). The top 5 domains were muscle symptoms, fatigue, interactions with healthcare, medication side effects, an...
PLOS ONE, 2021
Objective Health-related quality of life is impaired in idiopathic inflammatory myopathies. This study aimed to identify the main areas of the health-related quality of life environment domain that are affected in patients with myositis. Methods A qualitative study was performed using focus groups and applying the International Classification of Functioning, Disability, and Health. Participants were recruited from a cohort of 323 adult inflammatory myopathy patients consulting at a reference center for idiopathic inflammatory myopathy in Spain, selected by the maximum variation strategy, and placed in focus groups with 5 to 7 patients per group. The number of focus groups required was determined by data saturation. Results Twenty-five patients distributed in 4 focus groups were interviewed. The verbatim provided 54 categories directly related with environmental factors. Those associated with products or substances for personal consumption (e110), health professionals (e355), health ...
The Journal of Rheumatology, 2019
Objective.To present and vote on a myositis modified patient-reported outcome core domain set in the life impact area at the Outcome Measures in Rheumatology (OMERACT) 2018.Methods.Based on results from international focus groups and Delphi surveys, a draft core set was developed.Results.Domains muscle symptoms, fatigue, level of physical activity, and pain reached ≥ 70% consensus and were mandatory to assess in all trials. Domains lung, joint, and skin symptoms were mandatory in specific circumstances. This core set was endorsed by > 85% at OMERACT 2018.Conclusion.We propose a life impact core set for patients with idiopathic inflammatory myopathies and will proceed with instrument selections.
2004
for the International Myositis and Clinical Studies Group (IMACS) y Objective. To devise new tools to assess activity and damage in patients with idiopathic myopathies (IIM). Methods. An international multidisciplinary consensus effort to standardize the conduct and reporting of the myositis clinical trials has been established. Two tools, known as the myositis intention to treat index (MITAX) and the myositis disease activity assessment visual analogue scale (MYOACT), have been developed to capture activity in patients with IIM. In addition, the myositis damage index (MDI) has been devised to assess the extent and severity of damage developing in different organs and systems. These measures have been reviewed by the myositis experts participating in the International Myositis Assessment and Clinical Studies (IMACS) group and have been found to have good face validity and to be comprehensive. The instruments were assessed in two real patient exercises involving patients with adult dermatomyositis and inclusion body myositis. Results. The reliability of MITAX, MYOACT and MDI, measured by the intraclass correlation coefficient among the physicians, and the inter-rater reliability, as assessed by variation in the physicians' rating of patients, was fair to good for most aspects of the tools. Reliability and inter-rater agreement improved at the second exercise after the participants had completed additional training. Conclusions. The MITAX, MYOACT and MDI tools, which are now undergoing validity testing, should enhance the consistency, comprehensiveness and reliability of disease activity and damage assessment in patients with myositis.
Disability in patients with idiopathic inflammatory myopathies
Archives of the Balkan Medical Union
L'invalidité chez les patients aux myopathies inflammatoires idiopathiques Introduction. Les myopathies inflammatoires idiopathiques (MII) sont un groupe hétérogène de troubles caractérisé par une faiblesse musculaire chronique, une faible endurance musculaire et des infiltrats de cellules inflammatoires dans les tissus musculaires, avec des lésions organiques et des conséquences multiples et invalidantes. Le but de l'étude était de déterminer le degré d'invalidité chez les patients atteints de myopathies inflammatoires idiopathiques selon l'échelle de Rankin dans une cohorte moldave. Méthodes. Nous avons effectué une étude transversale de décembre 2015 à décembre 2018, dans laquelle ont été inclus des patients avec des MII. Les données démographiques et cliniques ont été collectées à l'aide d'un questionnaire spécifique, indiquant notamment le statut d'emploi et la dose d'entretien de corticostéroïdes. Pour estimer le degré d'incapacité fonctionnelle et d'invalidité au moment de l'enquête, nous avons appliqué l'échelle de Rankin modifiée, avec des scores ABSTRACT Introduction. Idiopathic inflammatory myopathies (IIMs) are a heterogeneous group of disorders, characterized by chronic muscle weakness, low muscle endurance and by the presence of inflammatory cell infiltrates in muscle tissue, with organ damage and disability. The objective of the study was to determine the degree of disability in a Moldavian cohort of patients with idiopathic inflammatory myopathies, by Rankin's scale. Methods. We performed a cross-sectional study, from December 2015 to December 2018, in which were included patients with IIMs. Demographic and clinical data were collected using a special questionnaire, including employment status, upholding dose of corticosteroids. In order to estimate the degree of functional disability at the time of the research, we applied the modified Rankin's scale, with possible scores from 0-no disability to 5-totally dependent. Results. 65 IIMs patients were enrolled in the study. Male to female ratio was 1:3.3, the patients' mean age was 50.2±11.7 years, the mean disease duration 95.2±6.89 months. According to modified Rankin's
Pain profile and opioid medication use in patients with idiopathic inflammatory myopathies
Rheumatology
Objectives Pain is commonly reported in people living with myositis. This study assesses the presence of pain in the subtypes of myositis as well frequency of opioid and non-opioid pain medication use. Methods A survey was developed and distributed by Myositis Support and Understanding, a patient-led advocacy organization, to members of its group. Multivariate logistic regression analysis and chi-squared tests were performed. Results A total of 468 participants completed the survey. 423 participants (dermatomyositis n = 183, polymyositis n = 109, and inclusion body myositis n = 131) were included, based on reported diagnosis, for final analysis. 91.5% of myositis participants reported current or past pain with 99% attributing their pain to myositis. There was a lower likelihood of pain in participants age over 60 years (OR 0.2, 95%CI : 0.1–0.6, p= 0.003). The percentage of participants reporting pain was statistically different based on myositis type (DM 97.2%, IBM 80.9%, and PM 94....