Health-related Quality Of Life In Multiple Sclerosis Patients Research Articles

PCR162 Health-Related Quality of Life of Patients with Multiple Sclerosis: Analysis of Ten Years of National Data

Multiple sclerosis (MS) is a chronic progressive autoimmune disease of the central nervous system (CNS). The health-related quality of life (HRQoL) of MS patients is significantly impacted by the pathophysiology and symptomatology of the disease. However, limited national-level data exists regarding the HRQoL of MS patients. This study evaluated the HRQoL and functional limitations of MS patients using the 2006-2015 Medical Expenditure Panel Survey (MEPS).

Contributing factors to health-related quality of life in multiple sclerosis.

BackgroundHealth‐related quality of life (HRQoL) is lower in people with multiple sclerosis (PwMS) compared to the healthy population, psychological symptoms accompanying multiple sclerosis (MS) have a serious impact on the HRQoL of PwMS. Data regarding the subject, however, remain conflicting.ObjectivesTo evaluate the patients' sociodemographic attributes, education, fatigue, depression, and cognitive impairment level of impact on the HRQoL for the whole cohort as well as comparing the sexes.Materials and MethodsThree hundred and twenty‐two relapse‐remitting MS patients filled out the Fatigue Impact Scale (FIS), Beck Depression Inventory (BDI), MS Quality of Life‐54 (MSQoL‐54) questionnaires, cognitive impairment were identified using Brief International Cognitive Assessment for MS (BICAMS) test. The patients' data were acquired from our clinic's MS registry or from patients' files.ResultsDepression and fatigue were found to have the most ubiquitous and robust effect on the overall and any given subdivision of the HRQoL composite. Other factors had a slight effect on some of the subscales when the whole cohort was evaluated. When the genders were compared, differences were found on 10 domains.ConclusionPsychopathological symptoms have a more powerful influence on the HRQoL of MS patients than physical impairment, also these symptoms influence men's and women's HRQoL with different power. This invokes the need for complex and personalized care in the treatment of PwMS. Ours is the first study to show a difference between the sexes in this regard.

Can inpatient multidisciplinary rehabilitation improve health-related quality of life in MS patients on the long term – The Danish MS Hospitals Rehabilitation Study

Background: Inpatient multidisciplinary rehabilitation (MDR) can improve health-related quality of life (HRQoL) in multiple sclerosis (MS) patients. However, the evidence of a long-term benefit is limited. Objectives: To investigate the long-term effectiveness of inpatient MDR on HRQoL in MS patients. Methods: We conducted a randomized controlled partial crossover trial with 427 MS patients. Results: Statistical significant long-term improvements in HRQoL were found in three of the six outcome measures at 12-month follow-up. Three in four suggested minimal clinically important differences (MCIDs) were unmet. Conclusion: These results indicate that the administration of inpatient MDR may lead to long-lasting improvements in HRQoL in MS patients.

A prospective web-based patient-centred interactive study of long-term disabilities, disabilities perception and health-related quality of life in patients with multiple sclerosis in The Netherlands: the Dutch Multiple Sclerosis Study protocol.

BackgroundIn the past two decades the widespread use of disease modifying drugs with moderate to strong efficacy has changed the natural course of multiple sclerosis (MS). Health care professionals, researchers, patient organizations and health authorities are in need of recent information about the objectified and subjective long-term clinical outcomes in MS patients. Such information is scarce.Methods/DesignWe started a prospective, web-based, patient-centred, interactive study of long-term disabilities, disabilities perception and health-related quality of life (HRQoL) in MS patients in The Netherlands (Dutch Multiple Sclerosis Study). The study has an on online patient-driven inclusion and online acquisition of patient-reported outcomes (PROs). At six-months intervals participants complete the Multiple Sclerosis Impact Profile (MSIP) (disabilities and disabilities perception in seven domains and four symptoms), the Multiple Sclerosis Quality of Life-54 items (MSQoL-54), the Modified Fatigue Impact Scale-5 items (MFIS-5) and the Leeds Multiple Sclerosis Quality of Life-8 items (LMSQoL) questionnaires, and a Medication and Adherence Inventory. Every three years the Expanded Disability Status Scale (EDSS) score is assessed by phone. The monthly completion of the MFIS-5, LMSQoL and Medication and Adherence Inventory is optional. Completed questionnaires and inventories, and automatically generated scores are made available online to patients for self-monitoring and self-management purposes, and to authorized health care professionals for the evaluation of disease activity and of the effectiveness of treatments. Study duration is planned to be 15 years. Results will be analyzed periodically using means and standard deviations for continuous variables, and frequencies for categorical variables. Relations between time points, variables, patient and treatment characteristics will be evaluated in random effects repeated measures models.DiscussionThe Dutch Multiple Sclerosis Study is characterized by online patient-driven inclusion; online data acquisition; the use of PROs; the optional monthly completion of short questionnaires; the interactive use of personal study data by patients and authorized health care professionals for self-monitoring, self-management and multidisciplinary care; the expected representativeness of the study sample; and a long-term time horizon. The study will provide valuable data on long-term disabilities, disabilities perceptions and HRQoL in MS patients in The Netherlands.

Prospect of brain-machine interface in motor disabilities: the future support for multiple sclerosis patient to improve quality of life.

Multiple sclerosis (MS) is an autoimmune neurological disorder, which has impacted health related quality of life (HRQoL) more intensively than any other neurological disorder. The approaches to improve the health standard in MS patient are still a subject of primary importance in medical practice and seek a lot of experimental exploration. The present review briefly explains the anomaly in neuron anatomy and dysfunction in signal transmission arising in the context with the chronic cerebrospinal venous insufficiency (CCSVI), a recent hypothesis related with MS pathophysiology. Subsequently, it insights brain-machine interface (BMI) as an alternative approach to improve the HRQoL of MS subjects. Information sources were searched from peer-reviewed data bases (Medline, BioMed Central, PubMed) and grey-literature databases for data published in 2000 or later. We also did systemic search in edited books, articles in seminar papers, reports extracted from newspapers and scientific magazines, articles accessed from internet; mostly using PubMed, Google search engine and Wikipedia. Out of approximately 178, 240 research articles obtained using selected keywords, those articles were included in the present study which addresses the latest definitions of HRQol and latest scientific and ethical developments in the research of MS and BMI. The article presented a brief survey of CCSVI mediated MS and BMI-approach as a treatment to serve the patients suffering from disabilities as a result of MS, followed by successful precedence of BMI approach. Apart from these, the major findings of selected research articles including the development of parameters to define HRQoL, types and development of BMIs and its role in interconnecting brain with actuators, along with CCSVI being a possible cause of MS have formed the foundations to conclude the findings of the present review article. We propose a perspective BMI approach and promises it holds for future research to improve HRQoL in MS patients. In addition, we propose that brain-computer interfaces will be the core of new treatment modalities in the future for MS disabilities.

Health-related quality of life in multiple sclerosis patients with bladder, bowel and sexual dysfunction

Purpose: Bladder, bowel and sexual dysfunction are often overlooked symptoms in patients with multiple sclerosis (MS) and can be associated with lower health-related quality of life (HRQoL). The aim is to explore the association of bladder, bowel and sexual dysfunction with HRQoL in MS patients stratified by disease duration (≤5 and >5 years) and controlled for clinical and sociodemographic variables. Methods: The study comprised 223 MS patients (mean age 38.9 ± 10.8 years, 67% female, mean EDSS 3.0 ± 1.5) who filled out the Short-Form-36 Health Survey, the Bladder Control Scale, the Bowel Control Scale and the Incapacity Status Scale. The relationships between the variables were analyzed with multiple linear regression using the SF36’s Physical Component Summary (PCS) and Mental Component Summary (MCS) as dependent variables. Results: More severe bladder dysfunction was associated with lower PCS in both disease duration groups (β = −0.35, p ≤ 0.001 versus β = −0.43, p ≤ 0.001), whereas more severe sexual dysfunction was associated with lower MCS in the group with shorter disease duration (β = −0.23, p ≤ 0.05). Conclusion: Bladder and sexual dysfunction are associated with a poorer HRQoL in MS patients even if they have had MS for a relatively short time. Recognition and proper treatment is needed to prevent the development of more severe dysfunction; this may also lead to a better HRQoL.Implications for RehabilitationBladder and sexual dysfunction are associated with a poor health-related quality of life in MS patients.Sexual dysfunction may explain mental health issues among individuals with a short disease duration.Recognition and treatment may prevent the development of more severe sexual and bladder dysfunction and increase physical health-related quality of life.

Impact of Mobility Impairment on Indirect Costs and Health-Related Quality of Life in Multiple Sclerosis

This study was conducted to estimate the indirect costs and health-related quality of life (HRQoL) (utilities) of multiple sclerosis (MS) patients in the United States (US), and to determine the impact of worsening mobility on these parameters. In collaboration with the North American Research Committee on Multiple Sclerosis (NARCOMS) registry we conducted a cross-sectional study of participants who completed the biannual update and supplemental spring 2010 survey. Demographic, employment status, income, mobility impairment, and health utility data were collected from a sample of registry participants who met the study criteria and agreed to participate in the supplemental Mobility Study. Mean annual indirect costs per participant in 2011US$ and mean utilities for the population and for cohorts reporting different levels of mobility impairment were estimated. Analyses included 3,484 to 3,611 participants, based on survey completeness. Thirty-seven percent of registrants were not working or attending school and 46.7% of these reported retiring early. Indirect costs per participant per year, not including informal caregiver cost, were estimated at $30,601±31,184. The largest relative increase in indirect costs occurred at earlier mobility impairment stages, regardless of the measure used. Participants’ mean utility score (0.73±0.18) was lower than that of a similarly aged sample from the general US population (0.87). As with indirect costs, larger decrements in utility were seen at earlier mobility impairment stages. These results suggest that mobility impairment may contribute to increases in indirect costs and declines in HRQoL in MS patients.

Krankheitsverarbeitungsstile und gesundheitsbezogene Lebensqualität bei Multiple-Sklerose-Erkrankten

In the last years there has been a growing interest in self assessment of Health-related quality of life (HRQOL). Studies show a reduced HRQOL in patients with Multiple Sclerosis (MS). A sample of n=3 157 members of the German Multiple Sclerosis Association (71.7% women, aged 48.2 years on average) was analyzed regarding the correlation between coping styles and HRQOL in MS patients. The findings show reduced HRQOL in MS patients in comparison to the general population in West Germany. MSQOL-54- and MSIS-29-sumscales and FKV-LIS-scales "depressive coping" and "minimizing importance" correlate significant: a depressive or trivializing coping style accompanies with reduced mental and physical HRQOL.

Étude longitudinale de la qualité de vie dans la sclérose en plaques : corrélation aux paramètres morphométriques de l’imagerie

Health related quality of life (HRQOL) is often affected in multiple sclerosis (MS). Nevertheless, to our knowledge, there is no longitudinal study in the literature about the correlation between MRI parameters and HRQOL in MS patients. We included 28patients with clinically definite relapsing remitting MS. All patients initiated subcutaneous interferon beta-1a therapy. To assess HRQOL, we used the SEP-59scale, the French validated translation of MSQOL-54, and the MusiQoL scale. Conventional MRI was performed every year. Lesion load (LL) and brain atrophy were automatically measured using SepINRIA, a free software developed by INRIA in Sophia Antipolis. The mean EDSS score was 1.7and disease duration was 2.5years. Our results revealed that HRQOL was significantly correlated to T1and T2-LL with both SEP-59and MusiQoL scales. T1-LL was better correlated with physical dimensions and T2-LL was better correlated with mental components. At 1-year follow-up, patients whose MRI showed either an increase of T1LL or at least one gadolinium enhancing lesion had a worse HRQOL at the end of the study. Initial brain parenchymal fraction (BPF) measure was also correlated with the long-term follow-up HRQOL. EDSS scored at the end of the study had not significantly changed (1.3; P>0.05). Our study revealed pertinent clinicoradiological correlations between HRQOL and MRI parameters in our cohort.

Assessing Quality of Life in Patients with Multiple Sclerosis

Health-related quality of life (HRQOL) is an important consideration for patients with a chronic disease such as multiple sclerosis (MS). We conducted a review of published articles and conference proceedings to evaluate the use of patient-reported measures of HRQOL in MS. A variety of HRQOL measures are used in MS research and clinical practice settings. Generic HRQOL instruments lack domains considered important to MS patients and are subject to significant floor and ceiling effects when used in MS patients. MS-specific instruments, including the Multiple Sclerosis Quality of Life–54, Multiple Sclerosis Quality of Life Inventory, and Multiple Sclerosis International Quality of Life, offer both advantages and limitations in assessing HRQOL in MS patients. Only a few reports on the use of these instruments to assess HRQOL outcomes in clinical studies have been published. MS-specific instruments hold the most promise in the assessment of the relationship between disease-modifying drug treatment and HRQOL in MS patients. Further research is needed to better understand the limitations of MS-specific HRQOL instruments in clinical research and practice. Future MS drug therapy trials should include the use of MS-specific instruments to prospectively assess HRQOL as a study outcome.

Qualidade de vida em portadores de esclerose múltipla

Multiple sclerosis (MS) is a chronic disease which may exert significant effects on the life of patients. Traditional outcome measures in MS lack in consider the effects of the disease on health-related quality of life (HRQoL). The goal of this study is to measure HRQoL in MS patients in the city of Uberlândia, State of Minas Gerais, Brazil. The Brazilian version of the SF-36 was applied in 23 MS patients and in 69 subjects of general population (blood donors) in Uberlândia. MS patients scored lower in all SF-36 scales than do the general population, principally in physical function domains. Patients with EDSS scores < or =3.5 had higher mean scores in four domains than do the patients with EDSS scores > or =4.0, and lower in all domains than control group. Depressive symptoms and heat intolerance showed correlation with SF-36 domains and components. In conclusion, MS patients have a significant negative impact on all HRQoL domains measured by SF-36, compared with general population, even in the stages with lower disability.