Information and resources important to the quality of life of people living with multiple sclerosis

2020 ◽  
Vol 26 (2) ◽  
pp. 92-104
Author(s):  
Malachy Bishop ◽  
Stuart Rumrill ◽  
Bradley McDaniels ◽  
Jian Li ◽  
Robert Fraser ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Psychosocial Health ◽  
Physical And Mental Health ◽  
Psychosocial Effects ◽  
Immune Mediated ◽  
Wide Range ◽  
The Central Nervous System ◽  
Types Of Information

AbstractMultiple sclerosis (MS) is a chronic, typically progressive immune-mediated disease characterized by inflammation and demyelination in the central nervous system (CNS), and is associated with a wide range of neurological, physical, and psychosocial effects. For people living with MS, access to relevant, timely, and accessible health information and resources may contribute to effective illness management, psychosocial health, and quality of life (QOL). In this study, we sought to increase understanding of the specific types of information most wanted by people with MS, as well as the sources and effects of this information. Specifically, we surveyed 748 adults with MS about (a) the sources from which they obtain information about MS, (b) the type of information that is most important in terms of improving their QOL, and (c) specific topics about which they would like to have more information, services, or resources. Content analysis of the qualitative results demonstrated the diversity of information sources accessed by people with MS and the importance of providing information through different formats and media. The participants prioritized information related to new MS medications and treatments, physical and mental health and wellness, and local opportunities for support. Implications for practicing rehabilitation counselors are discussed.

scholarly journals 178Depression but not physical activity mediates the fatigue-mental quality of life relationship in multiple sclerosis

2021 ◽  
Vol 50 (Supplement_1) ◽  
Author(s):  
Alexander Fidao ◽  
Alysha De Livera ◽  
Tracey Weiland ◽  
George Jelinek ◽  
Sandra Neate ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Multiple Sclerosis ◽  
Indirect Effect ◽  
Mediation Effect ◽  
Study Cohort ◽  
Wide Range ◽  
Clinically Significant

Abstract Background Fatigue is among the most prevalent symptoms of multiple sclerosis (MS), and significantly detrimental to mental quality of life. We examined the role of depression and physical activity as mediators in the fatigue-QoL relationship in MS. Methods Using an international study cohort measuring a wide range of lifestyle and clinical factors, determinants of fatigue (Fatigue Severity Scale) and mental quality of life (MSQoL-54; QoL) were assessed in 2,104 participants using log-binomial and linear regression, respectively. Structural equation modelling (SEM) was used to assess the mediating role of depression and physical activity between fatigue and mental QoL. Results The median mental QoL score in the sample was 73.8/100. The mean fatigue score was 40.5/63, with 65.6% having clinically significant fatigue. In SEM analyses evaluating depression as a mediator of the fatigue-QoL relationship, mental QoL was 14.17-points lower in those with clinically significant fatigue, of which the indirect effect via depression accounted for over 30.8% (p < 0.001). This mediation effect was most pronounced for the Role Limitations from Emotional Issues (44.9%, p < 0.001) and Emotional Wellbeing (41.6%, p < 0.001) subdomains. Evaluating physical activity as a mediator of the fatigue-QoL relationship, mental QoL was 11.03-points lower in those with clinically significant fatigue, of which the indirect effect via physical activity accounted for only 1.0% (p = 0.001). Conclusions This study provides evidence that depression accounts for a majority of the fatigue-mental QoL relationship, while physical activity only plays a small role. While replication and longitudinal studies are required for validation, our findings may inform the development of treatments for reducing the impacts of fatigue and improving QoL in people with MS. Key messages Fatigue’s negative impact on emotional quality of life in multiple sclerosis is not a function of reduced ambulation but instead its impact on depression. Reducing depression may thus markedly improve quality of life in this population.

scholarly journals Cognitive Impairment in Multiple Sclerosis

Folia Medica ◽  
2016 ◽  
Vol 58 (3) ◽  
pp. 157-163 ◽  
Author(s):  
Anastasiya G. Trenova ◽  
Georgi S. Slavov ◽  
Maria G. Manova ◽  
Jana B. Aksentieva ◽  
Lyuba D. Miteva ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Cognitive Impairment ◽  
Cognitive Disorders ◽  
Social Burden ◽  
Immune Mediated ◽  
The Social ◽  
The Central Nervous System ◽  
Axonal Transection ◽  
The Relationship

Abstract Multiple sclerosis (MS) is a socially significant immune-mediated disease, characterized by demyelination, axonal transection and oligodendropathy in the central nervous system. Inflammatory demyelination and neurodegeneration lead to brain atrophy and cognitive deficit in up to 75% of the patients. Cognitive dysfunctions impact significantly patients’ quality of life, independently from the course and phase of the disease. The relationship between pathological brain findings and cognitive impairment is a subject of intensive research. Summarizing recent data about prevalence, clinical specificity and treatment of cognitive disorders in MS, this review aims to motivate the necessity of early diagnosis and complex therapeutic approach to these disturbances in order to reduce the social burden of the disease.

Impact of Pacemakers and Implantable Cardioverter Defibrillators on the Psychosocial Functioning of Paediatric Patients

2020 ◽  
pp. 1-6
Author(s):  
Ali Dinc Bozat ◽  
Sinem Akgül ◽  
İlker Ertugrul ◽  
Tevfik Karagoz
Keyword(s):  
Quality Of Life ◽  
Physical Health ◽  
Implantable Cardioverter Defibrillator ◽  
Psychosocial Health ◽  
Paediatric Population ◽  
Brief Symptom Inventory ◽  
Psychosocial Effects ◽  
Cardioverter Defibrillator ◽  
Cardiac Devices

Abstract Although implanted cardiac devices improve patients’ physical health, long-term psychosocial effects especially in the paediatric population are still unknown. The aim of this study was to evaluate the psychosocial effects of cardiac devices in a paediatric population. Pediatric Quality of Life Questionnaire (PedsQoL) was used to evaluate life quality, Connor–Davidson Resilience Scale was used to evaluate resilience and Brief Symptom Inventory was used to evaluate psychiatric symptoms in a paediatric population with cardiac devices. Seventy-one patients were enrolled in the study. Fifty of them (70.5%) had a cardiac pacemaker and 21 of them (29.5%) had implantable cardioverter defibrillator. When compared to the control group both implantable cardioverter defibrillator and pacemaker using patients had lower quality of life (79.5 ± 12.4 versus 86.7 ± 12.1, p = 0.001) but no difference was observed in resilience and psychological pathologies. Age, gender, family size, and education level had no effect on quality of life. Implantable cardioverter defibrillator bearing patients had higher levels of anxiety than pacemaker patients (0.58 versus 0.30 p = 0.045), and implantable cardioverter defibrillator patients who had received shock in the last year had higher levels of somatisation than the group that did not receive device shock (0.17 versus 0.44 p = 0.022). In conclusion study showed that cardiac devices have negative effects on the psychosocial health of children. Cardiologist working with these patients should be aware of these pathologies and monitor not only physical health but also psychosocial health too.

The Quality of Life in Multiple Sclerosis Patients Living in the North Region, Depending on Cognitive Status

10.12737/5911 ◽  
2014 ◽  
Vol 21 (3) ◽  
pp. 104-108
Author(s):  
Молчанова ◽  
Zh. Molchanova
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Cognitive Status ◽  
Rapid Progression ◽  
The North ◽  
Real Increase ◽  
The Central Nervous System ◽  
Assess Quality ◽  
Multiple Sclerosis Patients

Multiple sclerosis is the most frequent disease of the central nervous system. An increase in multiple sclerosis frequency was registered in several countries including Russia. This may be associated with better multiple sclerosis diagnosis and treatment, better data collection and real increase in multiple sclerosis incidence. Early disability and its rapid progression emphasize the medico-social importance of multiple sclerosis. Neuropsychological disturbances are often observed in multiple sclerosis, being one of the important components in the formation of clinical disease. 43 patients living in the North region with definite multiple sclerosis and mild or moderate disability were tested with expended neuropsychological, neurological and study of quality of life. The purpose of the study was to analyze the role of cognitive, emotional and personal peculiarities at multiple sclerosis on quality of life. To assess quality of life the authors used SF-36. The results of this study of quality of life revealed significant differences in the physical, role and social components depending on the cognitive peculiarities.

scholarly journals Fatigue and Affective Manifestations in Multiple Sclerosis—A Cluster Approach

2019 ◽  
Vol 10 (1) ◽  
pp. 10 ◽  
Author(s):  
Samar S. Ayache ◽  
Moussa A. Chalah
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Central Nervous System ◽  
Nervous System ◽  
Economic Cost ◽  
Cluster Approach ◽  
High Prevalence ◽  
The Central Nervous System ◽  
Chronic Autoimmune Disease

Multiple sclerosis (MS) is a chronic autoimmune disease of the central nervous system, characterized by a high prevalence in young people, a drastic impact on the quality of life, and an important economic cost to society [...]

scholarly journals New Strategies for Rehabilitation and Pharmacological Treatment of Fatigue Syndrome in Multiple Sclerosis

2020 ◽  
Vol 9 (11) ◽  
pp. 3592
Author(s):  
Ewa Zielińska-Nowak ◽  
Lidia Włodarczyk ◽  
Joanna Kostka ◽  
Elżbieta Miller
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Daily Basis ◽  
Whole Body ◽  
Clinical Scales ◽  
Effective Strategies ◽  
Advantages And Disadvantages ◽  
Fatigue Syndrome ◽  
The Central Nervous System

Multiple sclerosis (MS) is the most common autoimmune disease of the central nervous system (CNS), with an inflammatory demyelinating basis and a progressive course. The course of the disease is very diverse and unpredictable. Patients face many problems on a daily basis, such as problems with vision; sensory, balance, and gait disturbances; pain; muscle weakness; spasticity; tremor; urinary and fecal disorders; depression; and rapidly growing fatigue, which significantly influences quality of life among MS patients. Excessive fatigue occurs in most MS patients in all stages of this disease and is named MS-related fatigue. The crucial issue is the lack of effective treatment; therefore, this review focuses not only on the most common treatment methods, but also on additional novel therapies such as whole-body cryotherapy (WBC), functional electrical stimulation (FES), and non-invasive brain stimulation (NIBS). We also highlight the advantages and disadvantages of the most popular clinical scales used to measure fatigue. The entire understanding of the origins of MS-related fatigue may lead to the development of more effective strategies that can improve quality of life among MS patients. A literature search was performed using MEDLINE, EMBASE, and PEDro databases.

scholarly journals Multiple Sclerosis: Impact on Oral Hygiene, Dysphagia, and Quality of Life

2020 ◽  
Vol 17 (11) ◽  
pp. 3979
Author(s):  
Francesco Covello ◽  
Giovanni Ruoppolo ◽  
Camilla Carissimo ◽  
Giulia Zumbo ◽  
Carla Ferrara ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Oral Health ◽  
Oral Hygiene ◽  
Health Impact ◽  
Oral Health Status ◽  
Gingival Inflammation ◽  
Oral Health Impact Profile ◽  
The Central Nervous System

Multiple sclerosis (MS) is an autoimmune disease in which the immune system reacts by damaging the central nervous system, specifically myelin and oligodendrocytes. It is the most debilitating neurological disease among young adults, causing personal, familiar, social, and professional limitations. Multiple sclerosis can cause disturbances in the orofacial district, due to a demyelination process on the nerves of the head and neck district. The aim of this study was to evaluate the oral health status, dysphagia, and quality of life of patients affected by MS. For this study, 101 patients aged between 12 and 70 (47 males, 54 females) affected by MS were selected, and three questionnaires were handed out and anonymously filled in by them: An oral hygiene test, DYMUS (DYsphagia in MUltiple Sclerosis), and IOHIP-14 (Italian version Oral Health Impact Profile). Through the analysis of the questionnaires it was possible to observe pathological conditions, such as gingival inflammation, xerostomia, dysphagia, neuralgia, and dysarthria. Through the analysis it was possible to outline how the roles of a medical team, composed of a dentist, otolaryngologist, and dental hygienist, are fundamental in coping with other medical figures, during the whole development of the diseases, as well as to prevent possible complications.

scholarly journals Quality of Life of Children and Adolescents with Multiple Sclerosis—A Literature Review of the Quantitative Evidence

2021 ◽  
Vol 18 (16) ◽  
pp. 8645
Author(s):  
Slávka Mrosková ◽  
Eleonóra Klímová ◽  
Ľudmila Majerníková ◽  
Ľubomíra Tkáčová
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Literature Review ◽  
Children And Adolescents ◽  
Future Research ◽  
Quantitative Evidence ◽  
The Social ◽  
The Central Nervous System ◽  
Generic Module

Background: Multiple sclerosis (MS) is a chronic disease of the central nervous system that also develops in patients under 18 years of age. The disease negatively affects the quality of life (QoL) of children and adolescents. We conducted a literature review. The aim of the review was to identify the QoL of pediatric patients with MS and assess the factors determining their QoL. Methods: We analyzed studies published between 2000 and 2020 in PubMed, Scopus, Science Direct, Web of Science, and EBSCO databases. Results: In all, 17 studies were included in the review. The most common tool in assessing QoL was the generic module PedsQL. The range of mean/median global score of QoL was 53.8–81.7. The worst QoL was dominantly reported in the school and emotional spheres, on the contrary, the disease’s least determined area of QoL was the social and physical dimension. In particular, disability and fatigue were important predictors of QoL. Conclusions: MS negatively affects the school and emotional spheres in particular, so it is important to pay greater attention to these spheres of life of MS patients. As the review studies pay insufficient attention to the analysis of positive factors and their impact on the QoL of MS patients, research should integrate these phenomena. The use of MS-targeted tools in future research in the pediatric MS population is also appropriate.

scholarly journals The association of selected multiple sclerosis symptoms with disability and quality of life: a large Danish self-report survey

BMC Neurology ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
S. Gustavsen ◽  
A. Olsson ◽  
H. B. Søndergaard ◽  
S. R. Andresen ◽  
P. S. Sørensen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Sleep Disturbances ◽  
Bladder Dysfunction ◽  
Self Report ◽  
Wide Range ◽  
Patient Reported ◽  
Bowel And Bladder Dysfunction ◽  
The Impact

Abstract Background People with multiple sclerosis (MS) experience a wide range of unpredictable and variable symptoms. The symptomatology of MS has previously been reported in large sample registry studies; however, some symptoms may be underreported in registries based on clinician-reported outcomes and how the symptoms are associated with quality of life (QoL) are often not addressed. The aim of this study was to comprehensively evaluate the frequency of selected MS related symptoms and their associations with disability and QoL in a large self-report study. Methods We conducted a cross-sectional questionnaire survey among all patients at the Danish Multiple Sclerosis Center, Copenhagen University Hospital, Denmark. The questionnaire included information on clinical and sociodemographic characteristics, descriptors of QoL and disability, as well as prevalence and severity of the following MS symptoms: impaired ambulation, spasticity, chronic pain, fatigue, bowel and bladder dysfunction, and sleep disturbances. Results Questionnaires were returned by 2244/3606 (62%). Participants without MS diagnosis or incomplete questionnaires were excluded, n = 235. A total of 2009 questionnaires were included for analysis (mean age 49.4 years; mean disease duration 11.7 years; and 69% were women). The most frequently reported symptoms were bowel and bladder dysfunction (74%), fatigue (66%), sleep disturbances (59%), spasticity (51%) and impaired ambulation (38%). With exception of fatigue and sleep disturbances, all other symptoms increased in severity with higher disability level. Invisible symptoms (also referred to as hidden symptoms) such as fatigue, pain and sleep disturbances had the strongest associations with the overall QoL. Conclusion We found invisible symptoms highly prevalent, even at mild disability levels. Fatigue, pain and sleep disturbances had the strongest associations with the overall QoL and were more frequently reported in our study compared with previous registry-based studies. These symptoms may be underreported in registries based on clinician reported outcomes, which emphasizes the importance of including standardized patient reported outcomes in nationwide registries to better understand the impact of the symptom burden in MS.

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