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

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.

Pain in individuals with idiopathic inflammatory myopathies, other systemic autoimmune rheumatic diseases, and without rheumatic diseases: A report from the COVAD study

“…The present study has limitations: (i) the patients' diagnoses were self‐reported, therefore prone to measurement bias; (ii) incidence of concomitant fibromyalgia, psychiatry disorders (eg, depression and anxiety) 36 or other factors which may impact pain perception, such as socioeconomic status and level of education; 37,38 (iii) matching of disease duration between different autoimmune diseases as varying elements of damage may influence the pain threshold; (iv) concomitant use of nonsteroidal anti‐inflammatory drugs in several groups and matching; (v) the cross‐sectional nature of this study prevents an evaluation of a causal relationship between the parameters and the potential role of a prospective behavior in many confounding covariables in this study; and (vi) this is a convenience sample prone to selection bias and the number of participants who had access to the e‐survey questionnaire is unknown. Nonetheless, we believe that the multiple comparison groups and the adjustments performed to mitigate the effect of this bias contributed to the validity of our results.…”

Patient-Reported Health-Related Quality of Life, Anxiety and Depression in Patients with Inclusion Body Myositis: A Register-Based Cross-Sectional Study in Germany

“…Our findings are relevant for international comparisons using the sparse existing HRQoL and mental health data in IBM patients [41] in order to comprehensively identify or validate procedures as well as therapeutic options to optimize health-care delivery. Therefore, we extensively collected PRO data for subgroup analyses regarding the physical function and severity of dysphagia with the sIFA, SSQ-G and FOIS-G. As to our knowledge, no other study used such PROMs to better understand the HRQoL and mental health in IBM, thus our data could hardly be compared directly regarding physical function and dysphagia to other studies investigated in this research topic [17]. Audag et al identified in their systematic review two studies evaluating dysphagia in IBM patients [42], whereby Olthoff et al [43] detected in 80% dysphagia and impaired Swallowing-Related Quality of Life (SWAL-QoL) compared to reference values and Cox et al [10] found patient-reported dysphagia symptoms in 65%.…”

“…According to a sequential mixed-methods design, this quantitative study builds upon a preliminary systematic review about HRQoL and mental health [17], a qualitative interview study about HRQoL and a cost-of-illness (COI) study, in order to better understand the complex care situation of German IBM patients. Therefore, we conducted a cross-sectional survey study in 2021 and recruited IBM patients via the German IBM patient registry www.ibm-registry.org (accessed on 28 July 2023).…”

“…The patient-reported health-related quality of life (HRQoL) in IBM patients has been sparsely reported, mostly showing physical limitations [17]. For the other two dimensions within the construct of HRQoL, social and psychological HRQoL, clear conclusions cannot be drawn since the patient-reported outcome measures (PROMs) used and the respective outcome values varied [17].…”

“…The patient-reported health-related quality of life (HRQoL) in IBM patients has been sparsely reported, mostly showing physical limitations [17]. For the other two dimensions within the construct of HRQoL, social and psychological HRQoL, clear conclusions cannot be drawn since the patient-reported outcome measures (PROMs) used and the respective outcome values varied [17]. Rare and chronic progressive diseases are associated with significant limitations in HRQoL as well as with increased psychiatric comorbidities such as anxiety or depression [18][19][20].…”