BURDEN OF DISEASE IN AUTOIMMUNE MYOSITIS

Autoimmune myositis can reshape patients’ lives beyond physical symptoms

Autoimmune myositis (AIM) can affect far more than muscle strength or organ function. The combined burden of weakness, pain, fatigue, extramuscular symptoms, treatment side effects, and uncertainty can substantially reduce health-related quality of life.^1-5

For many patients, AIM can change how they work, plan, socialize, and participate in family life. The burden may be visible in physical limitations, but it can also be hidden in exhaustion, anxiety, and the effort required to manage routine activities.^1,2,6,7

Pain and fatigue can amplify the burden of AIM

Pain and fatigue are major contributors to the lived burden of AIM. Symptoms can disrupt sleep and worsen fatigue, further amplifying symptom burden and functional impairment. Reduced activity limits independence and social participation, and ongoing fatigue or pain can make daily life feel increasingly difficult to manage.^1,2,7,8

Fatigue and pain are not only physical symptoms; they may also be linked with emotional wellbeing. In a Swedish retrospective study of 246 patients with AIM using a self-reported survey, fatigue showed a progressive association with the risk of anxiety or depression, while physical inactivity was associated with poorer mental health, reduced muscle function, and increased organ damage.²

A total of 246 Swedish patients with AIM (63% female; 52% median age, 64 years; median disease duration, 5.1 years) completed questionnaires measuring anxiety, depression and physical activity.²

Broken blue and white ceramic miniature bed shattered into multiple pieces on a wooden surface, with cracks and fragments scattered around it.

AIM can affect work, productivity, and financial wellbeing

The impact of AIM can extend into employment and productivity. Reduced work participation may contribute to financial strain and loss of role or identity. These effects may compound the physical and emotional burden of living with a chronic, progressive disease.^6,9–12

Blue and white ceramic briefcase placed on a wooden surface.

In one ambulatory AIM cohort (n=189), only 28% of patients were employed.¹³

Blue and white ceramic miniature desk set with drawers, chair, and open laptop on a wooden surface.

45% reported overall work productivity loss on the Work Productivity and Activity Impairment: Idiopathic Inflammatory Myopathy (WPAI:IIM) due to absenteeism and presenteeism.¹³

Blue and white ceramic figurine slumped over a ceramic miniature desk set with an open laptop.

62% of patients reported their work was impaired due to presenteeism, or impairment at work due to health.¹³

In this cross-sectional study based on the IIM registry in Peking Union Medical College Hospital,189 ambulatory patients (75% female; median age, 48 years) completed questionnaires assessing health-related quality of life, work productivity and activity impairment and associated factors among patients with idiopathic inflammatory myopathy.¹³

The burden can extend to families and caregivers

Many individuals with AIM rely on informal caregivers, and caregiver burden can increase with patient disability and financial hardship.¹⁴

Blue and white ceramic figurines of two people, one using a walking cane while the other provides support. The figurines are placed on a wooden surface.

75.8%

of caregivers for patients with AIM were found to experience at least mild to moderate burden.¹⁴

Blue and white ceramic piggy bank placed on a wooden surface.

60.8%

of caregivers for patients with AIM have been affected financially by their caregiving responsibilities.¹⁴

Practical support may include help with mobility, transportation, appointments, household tasks, treatment logistics, or personal care. This can affect caregiver routines, work, finances, and emotional wellbeing.^14,15

An anonymous worldwide survey distributed by MSU included 120 caregivers and used the 22-item Zarit Burden Interview to assess caregiver burden; although not specifically validated in idiopathic inflammatory myopathies, the instrument has been widely validated across countries. Total scores were categorised as no to mild burden (0–21), mild to moderate burden (22–40), moderate to severe burden (41–60), and severe burden (≥61). Caregiver burden was reported as no to mild in 24.2%, mild to moderate in 45.8%, moderate to severe in 25.0%, and severe in 5.0%; overall, 75.8% of caregivers reported at least mild to moderate burden. When asked whether myositis had affected their finances, 39.2% reported that their financial status had remained unchanged.¹⁴

The logistics. Where is the toilet going to be? You know, where are the steps? You know, we have to plan everything. Everything [the participant’s partner with AIM] does needs careful planning, because it could be detrimental to her wellbeing.

Patient quote⁷

Mental health and social participation are affected

The emotional impact of AIM is increasingly recognized as part of the broader disease burden. Psychological and emotional wellbeing are critical aspects of overall health in AIM. However, mental health research in AIM remains limited compared with other rheumatologic diseases, despite association with worse health-related quality of life, medication adherence, and disease outcomes.¹

Anxiety, depression, cognitive burden, sleep difficulty, and emotional distress can all contribute to the lived burden of AIM. These symptoms may affect daily functioning, treatment engagement, and overall quality of life (QoL).^1,16,17

The weakness, breathing troubles, itchy skin, and severe pain … have taken my independence, my dreams for the future, and vastly reduced my quality of life.
I want to run and play around with my grandchildren, and I want to go back to work!

Patient quote¹⁸

Continue exploring the burden of AIM

Quality-of-life burden is one part of the multidimensional impact of AIM. Explore how muscle weakness and extramuscular manifestations contribute to physical limitations, organ-related complications, and the broader patient experience.^14,19

Muscular weakness and disability

Learn how AIM-related muscle weakness can affect everyday activities, independence, mobility, and long-term physical function.^19,20

Explore muscle weakness

Extramuscular manifestations and mortality

Learn how AIM can affect the lungs, skin, GI tract, joints, and heart, and why some complications are associated with serious outcomes.^7,19

Explore extramuscular burden

Abbreviations:
AIM, autoimmune myositis; DM, dermatomyositis; GI, gastrointestinal; PM, polymyositis; WPAI:IIM, Work Productivity and Activity Impairment: Idiopathic Inflammatory Myopathy.

References:
1. Lanis A, et al. Clin Exp Rheumatol. 2024;42:413–424; 2. Andreasson KM, et al. Clin Exp Rheumatol. 2025;43(2):230–240; 3. Christopher-Stine L, et al. BMC Rheumatol. 2025;9(1):23; 4. Dyball S, et al. Rheumatology (Oxford). 2022;62(8):2673–82; 5. Battista, et al. Curr Rheum Rep. 2024;26(11):383–391; 6. Christopher-Stine L, et al. J Manag Care Spec Pharm. 2020;26(11):1424–1433; 7. Oldroyd A, et al. BMC Rheumatol. 2020;4:47; 8. Cholerzyńska H, et al. J Clin Med. 2024;13(13):3656; 9. Daniel E, et al. PLoS One. 2024;19(7):e0307144; 10. Piper MA, et al. Rheumatol Int. 2025;45(11):247; 11. Gedliki C, et al. Eur J Work Organ Psychol. 2022;32(1), 128–144; 12. Voojis M, et al. Occup Med (Lond). 2018;68(1):26–31; 13. Peng Z, et al. Rheumatology (Oxford). 2024;63:1113–1122;14. Brady P, et al. Qual Life Res. 2025;34(7):1913–24; 15. Myositis Support and Understanding Patient Article https://understandingmyositis.org/life-changed/; 16. Hanada M, et al. J Thorac Dis. 2023;15(8):4503–2; 17. McKee S, et al. Dermatol Ther (Heidelb). 2024;14(10):2771–2785; 18. Myositis Support and Understanding Association. FDA Patient-Led Listening Session Summary on Adult Dermatomyositis. Patient-led listening session with the US Food and Drug Administration; April 26, 2022. Accessed 7 May 2026; 19. Lundberg IE, et al. Nat Rev Dis Primers. 2021;7:86; 20. Marie I. Curr Rheumatol Rep. 2012;14:275–285.