Seattle Children's Hospital and Research Center, University of Washington, Seattle, WA, USA.
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.
Clin Exp Rheumatol. 2024 Feb;42(2):413-424. doi: 10.55563/clinexprheumatol/cngdfn. Epub 2024 Mar 14.
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.
心理和情绪健康是慢性风湿性疾病患者整体健康的关键方面。然而，心理健康相关文献主要集中在红斑狼疮或类风湿关节炎上，对特发性炎性肌病（IIM）的关注有限。相当比例的青少年肌炎患者报告存在需要转介心理健康治疗的心理困扰。被诊断患有抑郁症或焦虑症的皮肌炎成年患者未得到充分的心理健康护理。IIM 患者的心理健康症状与更差的健康相关生活质量、药物依从性和疾病结局相关。尽管已经证明存在较高的心理健康负担，但获得心理健康护理的机会仍然严重不足。与心理健康负担相关的数据受到样本量小、普遍性有限、评估方法不同以及定义心理健康状况的诊断代码不一致的限制。需要进一步研究来验证当前在肌炎人群中使用的筛查工具。其他相关可衡量因素包括疾病严重程度、非健康和健康相关创伤暴露、孤独、孤立、失去控制、睡眠困难、疲劳、疼痛、自尊、身体形象、性健康和健康不平等。需要研究治疗和药物干预对患有抑郁症和焦虑症的肌炎患者的疗效。目前，对于患有 IIM 的患者的心理健康负担和潜在干预措施，知识和资源有限。肌炎国际健康与研究合作联盟（MIHRA）心理影响科学工作组提供了一个初步路线图，以描述和确定未来的工作重点，以了解基线心理健康负担并比较干预途径。
