Addressing the unmet need for self-management strategies in idiopathic inflammatory myositis

Gupta, Latika; Deshmukh, Paulami; Thornton, Chrissy; Aggarwal, Rohit; Nikiphorou, Elena

doi:10.1136/rmdopen-2022-002745

RMD Open

2023

DOI: 10.1136/rmdopen-2022-002745

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Addressing the unmet need for self-management strategies in idiopathic inflammatory myositis

Latika Gupta

Paulami Deshmukh

Chrissy Thornton

et al.

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Cited by 3 publications

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Healthcare utilization and unmet needs of patients with antisynthetase syndrome: An international patient survey

Weiss,

Holzer,

Muehlensiepen

et al. 2023

Rheumatol Int

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Antisynthease syndrome (ASSD) is a rare, complex and understudied autoimmune disease. Internet-based studies can overcome barriers of traditional on-site research and are therefore very appealing for rare diseases. The aim of this study was to investigate patient-reported symptoms, diagnostic delay, symptoms, medical care, health status, working status, disease knowledge and willingness to participate in research of ASSD patients by conducting an international web-based survey. The multilingual questionnaire was created by an international group of rheumatologists and patients and distributed online. 236 participants from 22 countries completed the survey. 184/236 (78.0%) were female, mean age (SD) was 49.6 years (11.3) and most common antisynthetase antibody was Jo-1 (169/236, 71.6%). 79/236 (33.5%) reported to work full-time. Median diagnostic delay was one year. The most common symptom at disease onset was fatigue 159/236 (67.4%), followed by myalgia 130/236 (55.1%). The complete triad of myositis, arthritis and lung involvement verified by a clinician was present in 42/236 (17.8%) at disease onset and in 88/236 (37.3%) during the disease course. 36/236 (15.3%) reported to have been diagnosed with fibromyalgia and 40/236 (16.3%) with depression. The most reported immunosuppressive treatments were oral corticosteroids 179/236 (75.9%), followed by rituximab 85/236 (36.0%). 73/236 (30.9%) had received physiotherapy treatment. 71/236 (30.1%) reported to know useful online information sources related to ASSD. 223/236 (94.5%) were willing to share health data for research purposes once a year. Our results reiterate that internet-based research is invaluable for cooperating with patients to foster knowledge in rare diseases.

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Healthcare utilization and unmet needs of patients with antisynthetase syndrome: An international patient survey

Weiss,

Holzer,

Muehlensiepen

et al. 2023

Rheumatol Int

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Digital Health and Self-Management in Idiopathic Inflammatory Myopathies: A Missed Opportunity?

Battista,

Giardulli,

Sieiro Santos

et al. 2024

Curr Rheumatol Rep

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Purpose of Review This paper explored the potential of digital health in idiopathic inflammatory myopathies (IIMs), with a focus on self-management. Digital self-management technology includes tailored treatment plans, symptom tracking, educational resources, enhanced communication, and support for long-term planning. Recent Findings After arguing the importance of digital health in IIMs management, from diagnosis until treatment, our literature review revealed a notable gap in research focusing on the efficacy of digital self-management interventions for individuals with IIMs, with no randomised controlled trials or observational studies addressing this topic. Summary Our review further highlighted the significant unmet need for research in self-management interventions for individuals with IIMs. The absence of studies underscores the necessity for collaborative efforts to address this gap and develop personalised, effective strategies for managing IIMs using digital technology. Individuals with IIMs deserve tailored self-management approaches akin to those available for other rheumatic and musculoskeletal diseases.

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Digital approaches in myositis

Izuka,

Sen,

Komai

et al. 2024

Health Policy and Technology

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Addressing the unmet need for self-management strategies in idiopathic inflammatory myositis

Cited by 3 publications

References 4 publications

Healthcare utilization and unmet needs of patients with antisynthetase syndrome: An international patient survey

Healthcare utilization and unmet needs of patients with antisynthetase syndrome: An international patient survey

Digital Health and Self-Management in Idiopathic Inflammatory Myopathies: A Missed Opportunity?

Digital approaches in myositis

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