Disability in idiopathic inflammatory myopathies: questionnaire-based study

Abstract

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.

Underdiagnosis of cardiopulmonary involvement in patients with idiopathic inflammatory myopathies

“…This led to the conclusion that some factors other than the involvement of the cardiac system and lungs Reumatologia 2021; 59/5 contribute to a greater extent to the deterioration of the quality of life. Due to the multitude of collected data, a detailed analysis of the factors aggravating disability, based on the HAQ-DI part of the questionnaire, was presented in a separate publication [25].…”

Patient insights on living with idiopathic inflammatory myopathy and the limitations of disease activity measurement methods – a qualitative study

“…Our findings replicate findings reported in a number of OMERACT studies, which, as mentioned earlier, investigated patient experiences of living with IIM and identified that both pain and fatigue were predominant symptoms. Of the small number of studies that have quantitatively measured fatigue and myalgia (muscle-related pain) in IIM populations, scores were typically high (mean 7/10 for fatigue and 4/10 for pain in DM) [21].…”

Functioning in adult patients with idiopathic inflammatory myopathy: Exploring the role of environmental factors using focus groups

“…Patients with idiopathic inflammatory myopathies can be highly dependent because of muscle weakness, joint inflammation, or the principal organ involvement, affecting, for example, respiration or the swallowing process [28]. Hence, it is essential to identify the factors that act as facilitators or barriers in their lives.…”