The health-related quality of life, mental health and mental illnesses of patients with inclusion body myositis (IBM): results of a mixed methods systematic review

Orphanet Journal of Rare Diseases

Laura Gumbert¹  Katja C. Senn¹  Klaus H. Nagels¹  Maggie C. Walter²  Sabine Krause²  Simone Thiele² 

[1] Chair of Healthcare Management and Health Services Research, University of Bayreuth;Friedrich-Baur-Institute, Department of Neurology, Ludwig-Maximilians-University of Munich;

关键词: Health-related quality of life;    Inclusion body myositis;    Neuromuscular diseases;    Mental health;    Rare diseases;   

DOI  :  10.1186/s13023-022-02382-x

来源: DOAJ

【 摘 要 】

Abstract Background Inclusion body myositis (IBM) is a rare neuromuscular disease (NMD) and effective therapies are not available. Thus, it is relevant to determine the health-related quality of life (HRQoL) in IBM patients including aspects of mental health and illnesses. Objectives To identify and summarize the assessment of HRQoL, mental health and illnesses in IBM, the major factors that determine and influence them as well as the respective influence of IBM in general and compared to other NMD as a systematic review. Methods We performed a mixed methods systematic review according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. The search was conducted within the databases PubMed, PsycINFO, LIVIVO and the Cochrane Database. Data were narratively summarized and categorized in the physical, psychological and social HRQoL dimensions. Results The systematic screening totalled 896 articles. Six studies were finally identified, comprising of 586 IBM patients. The applied patient reported outcome measures (PROMs) varied. Quantitatively, the main physical impairments (e.g. weakness, functioning, role perception) were assessed using the general population or other NMD as comparators. Results on social and psychological HRQoL were frequently inconsistent. Qualitatively, psychological and social limitations accompanied IBM related physical deteriorations. Conclusions A research gap exists regarding rigour determinants of HRQoL and mental illness in IBM. In-depth qualitative studies could help to prepare the ground for the assessment of long-term HRQoL data combined with appropriately focussed psychological PROMs advancing the understanding of the HRQoL in IBM throughout the course of the disease from a patient perspective.

【 授权许可】

Unknown