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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

1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19, 20

 

  1. Seattle Children’s Hospital and Research Center, University of Washington, Seattle, WA, USA. aviya.lanis@seattlechildrens.org
  2. Theme Women’s Health and Health Professionals, Medical Unit Occupational Therapy and Physical Therapy, Karolinska University Hospital, and Division of Rheumatology, Department of Medicine, Solna, Karolinska Institutet, Stockholm, Sweden.
  3. Department of Paediatrics, Division of Paediatric Rheumatology, Duke University School of Medicine, Durham, NC, USA.
  4. Cure JM Foundation, USA.
  5. School of Psychological Sciences and Health, University of Strathclyde, Glasgow, UK.
  6. Dutch Myositis Group at Spierziekten Nederland (Dutch patient association for NMD), Baarn, The Netherlands.
  7. Department of Rheumatology, Royal Wolverhampton Hospitals NHS Trust, Wolverhampton, and Division of Musculoskeletal and Dermatological Sciences, Centre for Musculoskeletal Research, School of Biological Sciences, The University of Manchester, UK.
  8. Department of Paediatrics, Division of Paediatric Rheumatology, Benioff Children’s Hospital, University of California, San Francisco, CA, USA.
  9. Hospital for Sick Children, Division of Rheumatology, Toronto, and SickKids Research Institute, Neurosciences and Mental Health Program; University of Toronto Temerty Faculty of Medicine, Toronto, Canada.
  10. The Myositis Association, USA.
  11. Great Ormond Street Children’s Hospital, London, UK.
  12. Division of Rheumatology, University of Washington, Seattle, WA, USA.
  13. Great Ormond Street Children’s Hospital, London, UK.
  14. Theme Women’s Health and Health Professionals, Medical Unit Occupational Therapy and Physical Therapy, Karolinska University Hospital, and Department of Neurobiology, Care Sciences and Society, Division of Occupational Therapy, Karolinska Institutet, Stockholm, Sweden.
  15. Children’s Hospital at Montefiore, Division of Paediatric Rheumatology, Bronx, NY, and Albert Einstein College of Medicine, Department of Paediatrics, Bronx, NY, USA.
  16. Seattle Children’s Hospital and Research Center, University of Washington, Seattle, WA, USA.
  17. University of Michigan, Ann Arbor, MI, USA.
  18. Rehabilitation Center Klimmendaal Arnhem, and Radboud University Medical Center Nijmegen, The Netherlands.
  19. Children’s Hospital at Montefiore, Division of Paediatric Rheumatology, Bronx, NY, and Albert Einstein College of Medicine, Department of Paediatrics, Bronx, NY, USA.
  20. New Orleans Scleroderma and Sarcoidosis Patient Care and Research Center, New Orleans; University Medical Center, Comprehensive Pulmonary Hypertension Center and Interstitial Lung Disease Clinic Programs, New Orleans; Louisiana State University School of Medicine, Section of Pulmonary Medicine, New Orleans, and Tulane University School of Medicine, Undergraduate Honors Department, New Orleans, LA, USA.

CER17252
2024 Vol.42, N°2
PI 0413, PF 0424
Reviews

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PMID: 38488093 [PubMed]

Received: 30/10/2023
Accepted : 02/02/2024
In Press: 14/03/2024
Published: 14/03/2024

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.

DOI: https://doi.org/10.55563/clinexprheumatol/cngdfn

Rheumatology Article