Mental health in paediatric and adult myositis-related diseases : current state of research, interventions, and future steps from the MIHRA Psychological Impact Scientific Working Group

Lanis, A. and Alexanderson, H. and Ardalan, K. and Edison, S. and Graham, C.D. and de Groot, I. and Gupta, L. and Kim, S. and Knight, A.M. and Kobert, L. and Livermore, P. and Lood, C. and Pilkington, C. and Regardt, M. and Rubinstein, T.B. and Shenoi, S. and Turnier, L. and Voet, N.B.M. and Wahezi, D.M. and Saketkoo, L.A. (2024) Mental health in paediatric and adult myositis-related diseases : current state of research, interventions, and future steps from the MIHRA Psychological Impact Scientific Working Group. Clinical and Experimental Rheumatology, 42 (2). pp. 413-424. ISSN 0392-856X (https://doi.org/10.55563/clinexprheumatol/cngdfn)

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Abstract

Psychological and emotional well-being are critical aspects of overall health for individuals with chronic rheumatologic conditions. Mental health-related literature, however, predominantly focuses on systemic lupus erythematosus or rheumatoid arthritis, with limited emphasis on idiopathic inflammatory myopathies (IIMs). High proportions of those with juvenile myositis report psychological distress at levels warranting mental health referral. Adults with dermatomyositis diagnosed with depression or anxiety do not receive adequate mental health care. Mental health symptoms in those with IIMs are associated with worse health-related quality of life, medication adherence, and disease outcomes. Despite demonstrated high rates of mental health burden, access to mental health care remains severely lacking. Data related to mental health burden is limited by small sample size, limited generalisability, variable methods of assessment, and inconsistent diagnosis codes to define mental health conditions. Additional research is needed to validate current screening tools in myositis populations. Other relevant measurable factors include disease severity, non-health- and health-related trauma exposure, loneliness, isolation, loss of control, sleep difficulties, fatigue, pain, self-esteem, body image, sexual health, and health inequities. Studiesare needed investigating the efficacy of therapeutic and pharmacologic interventions among patients with myositis who experience depression and anxiety. Currently, knowledge and resources are limited around mental health burden and potential intervention for those living with IIMs. The Myositis International Health & Research Collaborative Alliance (MIHRA) Psychological Impact Scientific Working Group offers a preliminary road map to characterise and prioritise the work ahead to understand baseline mental health burden and compare avenues for intervention.

ORCID iDs

Lanis, A., Alexanderson, H., Ardalan, K., Edison, S., Graham, C.D. ORCID logoORCID: https://orcid.org/0000-0001-8456-9154, de Groot, I., Gupta, L., Kim, S., Knight, A.M., Kobert, L., Livermore, P., Lood, C., Pilkington, C., Regardt, M., Rubinstein, T.B., Shenoi, S., Turnier, L., Voet, N.B.M., Wahezi, D.M. and Saketkoo, L.A.;
CORE (COnnecting REpositories)