Health-Related Quality of Life (HRQoL) in Idiopathic Inflammatory Myopathy: A Systematic Review

Leclair, Valérie; Regardt, Malin; Wojcik, Sophie; Hudson, Marie

doi:10.1371/journal.pone.0160753

Cited by 34 publications

(35 citation statements)

References 27 publications

(99 reference statements)

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“…These included older age, effect of disease on work, the presence of another autoimmune disease, lung disease, joint involvement, and use of multiple medications. The reduction in HRQoL found in the current study is consistent with various other smaller studies that compared IIM patients to the general population , as well as analyses assessing all studies in aggregate . Other studies have shown comparable reduced HRQoL scores in other rheumatic diseases, including SLE, RA, and Sjögren's syndrome .…”

Section: Discussionsupporting

confidence: 91%

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Predictors of Reduced Health‐Related Quality of Life in Adult Patients With Idiopathic Inflammatory Myopathies

Feldon

Farhadi

Brunner

et al. 2017

Arthritis Care & Research

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Objective Extensive studies on health-related quality of life (HRQOL) in idiopathic inflammatory myopathies (IIM) are lacking. Our objective was to document HRQOL and to identify factors associated with a reduced HRQOL in IIM patients. Methods A total of 1,715 patients (median age 49.9, 70% female, 87% Caucasian) who met probable or definite Bohan and Peter or Griggs criteria for myositis were included from the MYOVISION registry. HRQOL was ascertained via the SF-12v2® Health Survey questionnaire. HRQOL physical and mental summary scores (PCS and MCS, respectively) in relation to different patient and disease characteristics were compared to scores from the matched normative data from the U.S. general population and rheumatoid arthritis (RA) patients. Bivariate and multiple linear regression analyses were performed to assess the association between HRQOL and patient and disease parameters. Results The mean summary scores of the SF-12v2® were significantly lower in IIM as compared to the normative and RA populations. A diagnosis of inclusion body myositis, older age, patient-reported negative effect of disease on work, presence of another concurrent autoimmune disease, polypharmacy, and IIM-associated lung disease and joint involvement were all significantly associated with lower PCS scores. Lower MCS scores were associated with joint involvement and a negative effect on work. Conclusion In this large study of patient-reported outcomes in IIM, an association was found between multiple disease characteristics and reduced HRQOL, mostly in the physical domain. In the United States, HRQOL in IIM patients was lower compared to the general population and to RA patients.

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Section: Discussionsupporting

confidence: 91%

“…However, there are few sizable studies assessing HRQoL in patients with IIM . Due to the rarity of these conditions, previous studies had small sample sizes, which prohibited adequately powered statistical comparisons to delineate patient or IIM factors associated with HRQoL outcomes .…”

Section: Introductionmentioning

confidence: 99%

Predictors of Reduced Health‐Related Quality of Life in Adult Patients With Idiopathic Inflammatory Myopathies

Feldon

Farhadi

Brunner

et al. 2017

Arthritis Care & Research

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“…Idiopathic inflammatory myopathies (IIM) are a heterogeneous group of inflammatory muscle diseases that involve muscle weakness and visceral involvement, resulting in disability and impaired quality of life [1][2][3]. As IIM are rare among inflammatory rheumatic diseases, it is difficult to collect data for outcome research with a sufficient number of patients.…”

Section: Introductionmentioning

confidence: 99%

Trends in idiopathic inflammatory myopathies: cross-sectional data from the German National Database

et al. 2020

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Objective To describe trends in outcomes among patients with idiopathic inflammatory myopathies (IIM) over two decades. Methods From 1997 to 2017, a total of 1079 IIM patients were documented in the National Database of the German Collaborative Arthritis Centers. Annual cross-sectional data on treatment, disease activity, patient-reported outcomes, hospitalization and employment were compared across the years. Information on phenotypes, organ manifestations and autoantibodies was collected for a subset to compare the assessment of global health, pain, fatigue and sleeping disorders. Results In 2017, significantly more IIM patients were assessed to be in low disease activity (94%) than in 1997 (59%), p < 0.01. Pain (p = 0.001), global health (p = 0.049), fatigue (p = 0.03) and sleeping disorders (p = 0.01) also improved since recording. Glucocorticoid use decreased from 84 to 58% (p < 0.01). Employment in patients < 65 years remained unchanged (53%), while early retirement (23-9%), hospitalization/year (34-18%) and sick leave (52-24%) decreased. A total of 186 patients with information on subtypes were classified as polymyositis (44%), dermatomyositis (33%), anti-synthetase syndrome (10%), overlapping-myositis (8%), inclusion body myositis (2%), necrotizing myositis (0.5%) and unspecific (3%). The most frequently reported symptoms were limitations in global health (60%), fatigue (57%) and sleeping disorders (51%), and all of them were most frequent in overlap-myositis. Pulmonary hypertension and cardiomyopathy were associated with poor outcomes regarding global health, daily activities and fatigue. Conclusion IIM patients report better outcomes than 20 years ago, along with good physician-reported disease control. Global health, fatigue and sleeping disorders are relevant patient-reported domains in IIM.

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“…Due to progressive muscular atrophy, decreasing endurance, internal organ involvement and limited therapeutic options, the disease often leads to physical disability. Several subtypes of IIM have been distinguished including among others dermatomyositis (DM), polymyositis (PM), juvenile myositis (JDM) and inclusion body myositis (IBM) [1,4]. The Health Assessment Questionnaire (HAQ) remains one of the most commonly used patient-reported outcome (PRO) tool [5,6].…”

Section: Introductionmentioning

confidence: 99%

Disability in idiopathic inflammatory myopathies: questionnaire-based study

2019

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Idiopathic inflammatory myopathies (IIM) are progressive, debilitating diseases that can lead to severe impairment. The aim of the study was to evaluate the level of disability and compare it between different subtypes of IIM as well as to estimate clinical symptoms associated with greater risk of disability and distinguish the most troublesome activities in this group of patients. A online form concerning clinical symptoms, comorbidities and limitations in daily living was created and distributed to online support groups for patients with IIM. Health Assessment Questionnaire was used to estimate disability and physical limitations while visual analogue scales enabled to assess the intensity of clinical symptoms. 361 out of 377 responders were included for further evaluation. High prevalence of disability was observed in each subtype yet predominantly in patients with inclusion body myositis (IBM) as 51.43% of them fulfilled the criteria of severe to very severe disability. Level of disability correlated with muscle weakness, tolerance of physical activity and level of fatigue. 45.62% of responders in general required walking devices and 43.50% of participants declared using facilitating devices for maintaining hygiene. Patients with IIM encounter multitude physical limitations that can be partially compensated by usage of facilitating devices or aid of the caregivers. IBM seems to be the most disabling subtype.

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Health-Related Quality of Life (HRQoL) in Idiopathic Inflammatory Myopathy: A Systematic Review

Cited by 34 publications

References 27 publications

Predictors of Reduced Health‐Related Quality of Life in Adult Patients With Idiopathic Inflammatory Myopathies

Predictors of Reduced Health‐Related Quality of Life in Adult Patients With Idiopathic Inflammatory Myopathies

Trends in idiopathic inflammatory myopathies: cross-sectional data from the German National Database

Disability in idiopathic inflammatory myopathies: questionnaire-based study

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