Health-related quality of life of multiple sclerosis patients: a European multi-country study

Abstract

Background Inconsistent use of generic and disease-specific health-related quality of life (HRQOL) instruments in multiple sclerosis (MS) studies limits cross-country comparability. The objectives: 1) investigate real-world HRQOL of MS patients using both generic and disease-specific HRQOL instruments in the Netherlands, France, the United Kingdom, Spain, Germany and Italy; 2) compare HRQOL among these countries; 3) determine factors associated with HRQOL. Methods A cross-sectional, observational online web-based survey amongst MS patients was conducted in June–October 2019. Patient demographics, clinical characteristics, and two HRQOL instruments: the generic EuroQOL (EQ-5D-5L) and disease-related Multiple Sclerosis Quality of Life (MSQOL)-54, an extension of the generic Short Form-36 (SF-36) was collected. Health utility scores were calculated using country-specific value sets. Mean differences in HRQOL were analysed and predictors of HRQOL were explored in regression analyses. Results In total 182 patients were included (the Netherlands: n = 88; France: n = 58; the United Kingdom: n = 15; Spain: n = 10; living elsewhere: n = 11). Mean MSQOL-54 physical and mental composite scores (42.5, SD:17.2; 58.3, SD:21.5) were lower, whereas the SF-36 physical and mental composite scores (46.8, SD:22.6; 53.1, SD:22.5) were higher than reported in previous clinical trials. The mean EQ-5D utility was 0.65 (SD:0.26). Cross-country differences in HRQOL were found. A common predictor of HRQOL was disability status and primary progressive MS. Conclusions The effects of MS on HRQOL in real-world patients may be underestimated. Combined use of generic and disease-specific HRQOL instruments enhance the understanding of the health needs of MS patients. Consequent use of the same instruments in clinical trials and observational studies improves cross-country comparability of HRQOL.

The Potential Cost-Effectiveness of a Cell-Based Bioelectronic Implantable Device Delivering Interferon-β1a Therapy Versus Injectable Interferon-β1a Treatment in Relapsing–Remitting Multiple Sclerosis

“…Patient characteristics at baseline were a hypothetical cohort of 1000 Dutch RRMS patients. The baseline characteristics (mean starting age of the cohort was set at 35 years old, a 3:1 female to male ratio, and the distribution of disability status based on the patient’s current first-line DMT status) reflect the data collected through an online HRQOL survey in the Netherlands [ 14 ]. The disability status was measured using the Expanded Disability Status Scale (EDSS, a measure that quantifies disability on a scale from 0 [no disability] to 10 [death] [ 15 ]), and the distribution was as follows: EDSS 0 (14%), EDSS 1 (29%), EDSS 2 (29%), EDSS 3 (0%), EDSS 4 (0%), EDSS 5 (14%), EDSS 6 (14%), EDSS 7–9 (0%).…”

MSProDiscuss™ Clinical Decision Support Tool for Identifying Multiple Sclerosis Progression

“…For a tool to effectively identify the progression of MS, multiple aspects of the disease should be considered, such as aspects of daily living and patient clinical history [ 42 , 43 , 44 ]. Such aspects are frequently overlooked, though research has shown that they provide neurologists with a deeper understanding of their patient’s health status [ 42 , 43 ].…”

“…For a tool to effectively identify the progression of MS, multiple aspects of the disease should be considered, such as aspects of daily living and patient clinical history [ 42 , 43 , 44 ]. Such aspects are frequently overlooked, though research has shown that they provide neurologists with a deeper understanding of their patient’s health status [ 42 , 43 ]. Some composite outcome measures are effective for the detection of a broad range of clinical manifestations and can be more sensitive than measuring a single outcome such as an MRI endpoint, relapse, or disability level [ 24 ].…”

The Big Five Personality Traits and Positive Orientation in Polish Adults with Multiple Sclerosis: The Role of Meaning in Life

“…Multiple sclerosis (MS) is a chronic, progressive, inflammatory, and neurological disease [1][2][3][4] which is often accompanied by a large spectrum of clinical symptoms that include fatigue [5], sleep disturbance [5], pain or discomfort [4], social isolation [6], motor difficulties [7], cognitive impairment [8,9], hippocampal atrophy [10], and several others. According to the data available in the Atlas of MS [11] for 2020, there are 2.8 million people living with MS worldwide.…”