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

Aviya Lanis, Helene Alexanderson, Kaveh Ardalan, Suzanne Edison, Christopher D. Graham, Ingrid de Groot, Latika Gupta, Susan Kim, Andrea M. Knight, Linda Kobert, Polly Livermore, Christian Lood, Clarissa Pilkington, Malin Regardt, Tamar B. Rubinstein, Susan Shenoi, Luke Turnier, Nicole B.M. Voet, Dawn M. Wahezi, Lesley Ann Saketkoo

Research output: Contribution to journalReview articlepeer-review

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.

Original languageEnglish (US)
Pages (from-to)413-424
Number of pages12
JournalClinical and Experimental Rheumatology
Volume42
Issue number2
DOIs
StatePublished - Feb 1 2024

ASJC Scopus subject areas

  • Rheumatology
  • Immunology and Allergy
  • Immunology

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