Abstract Background/Aims Juvenile dermatomyositis (JDM) is a rare and potentially life-threatening idiopathic inflammatory myopathy. Primary symptoms include muscle pain/weakness, skin rash, and organ dysfunction. The chronic and often variable nature of JDM can impose significant physical, psychological, and social burden on those affected. The current study aimed to explore patient and parent experiences of living with JDM. Methods This is a sub-study of the MYOSCOPE study which investigated the feasibility and impact of using nailfold capillaroscopy to bring a visual measure of disease activity in clinical practice to help children and young people with JDM. Ethical approval was granted and reviewed by a relevant authority and committee. Semi-structured interviews were conducted in-person and online with participants who took part in MYOSCOPE. Participants were included if they were patients, or parents/caregivers of patients, at two specialist children’s hospitals in the UK, and consented to interview. The interview protocol was informed by patient and public involvement. All interviews were audio recorded and transcribed verbatim. Analyses were conducted following an interpretive thematic analysis approach. Results Sixteen semi-structured interviews were conducted between March and June 2025 with twenty-four participants (eight patients, sixteen parents). Three main themes were identified: disruption to normal life, psychological effects, and support systems. All participants reported disruption to normal life, with patients’ symptoms limiting their ability to participate in hobbies, attend school, and perform daily living tasks. A sibling’s ability to attend school was also affected, due to perceived need to isolate to reduce infection risk for the immunosuppressed patient. Frequent hospital visits complicated parents’ work and home commitments, with one parent choosing to become unemployed and two parents accepting that they were spending less time with their other children. Psychological effects included mental maturation, increased self-awareness, worry, and medication-induced anxiety and depression. One child developed specific phobias of stimuli associated with their medication due to common adverse side effects. Moreover, steroid-related weight gain contributed to bullying, eating disorders, and suicidal ideation. Many families thus sought support through hospital programmes, which sometimes alleviated psychological distress and improved parental disease management. Parents appreciated connecting with other families at the hospital and sharing practical advice, such as how to balance other commitments with frequent hospital visits. However, some hospital programmes failed to address specific difficulties and posed accessibility challenges due to travel burden. Alternative support networks were therefore pursued through private therapies and online groups, though the latter was associated with misinformation. Conclusion The current study highlights the various and often interrelated physical, psychological, and social difficulties experienced by JDM patients and their parents. The results should encourage healthcare professionals to better understand the impact of JDM on families and address barriers to effective support. Disclosure K. Roberts: None. M. Hadjittofi: None. J. Fitzgerald: None. C. Papadopoulou: None. A. Murray: None. G. Dinsdale: None. L. Huckerby: None. J.S. Ainsworth: None. A. Vail: None. K. Kupiec: None. Y. Glackin: None. L.R. Wedderburn: None. C. Taylor: None. C.E. Pain: None. A. Herrick: None. L.J. McCann: None. E. Deja: None.
Roberts et al. (Wed,) studied this question.