Women's and Men's Differing Experiences of Health, Lifestyle, and Aging with Multiple Sclerosis.
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ABSTRACT:
SUBMITTER: Ploughman M
PROVIDER: S-EPMC5564277 | biostudies-other | 2017 Jul-Aug
REPOSITORIES: biostudies-other
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Project description:BackgroundWomen with multiple sclerosis (MS) may face challenges related to managing reproduction, pregnancy, and menopause while simultaneously managing their disease. The purpose of this scoping review was to map the literature broadly related to topics relevant to women's health in MS to inform the clinical and research communities about the existing types and sources of evidence and knowledge gaps. Apart from coverage of topics within the field of women's health, we were interested in potential gaps related to geographic and racial and ethnic diversity. We also aimed to understand the degree of inclusion of women with progressive MS in this research.MethodsWe searched the EMBASE and Ovid Medline databases from 1980 until November 23, 2020. We included case-control and cohort studies, clinical trials and case series published in any language, conducted in women with MS, clinically isolated syndrome, or radiologically isolated syndrome, that addressed women's health. Two reviewers independently screened abstracts and full-text reports for study inclusion, and completed data extraction.ResultsOf 112,106 citations screened, 1,041 underwent full-text review and 353 met the inclusion criteria. The number of studies regarding women's health has increased exponentially over time. Almost half of the studies were conducted (at least in part) in Europe, while 21.7% were conducted in North America; only one study was conducted in Africa. Most studies did not report the race or ethnicity of their participants (n = 308, 87.2%). Among the 353 studies, 509 topics were reported as some studies addressed more than one topic. Over one-third of these focused on pregnancy (n = 201, 37.2%), followed by fetal/neonatal outcomes (14.4%) and sexual dysfunction (10%). Among the 201 studies that focused on pregnancy, only 51 (25.4%) included participants with progressive MS.ConclusionsThis review identifies important knowledge gaps related to women's health in MS and particularly the need for future studies to include participants with a broader range of races and ethnicities, with progressive MS, and living in Asia-Pacific and African regions.
| S-EPMC8841798 | biostudies-literature
Project description:BackgroundPersons with Multiple Sclerosis (pwMS) follow individual strategies to cope with this highly heterogeneous disease. As surveys show, lifestyle habits play an important role in pwMS. However, little is known about individual experiences of pwMS with different lifestyle adjustment strategies.ObjectiveThis study aims to describe and understand individual experiences of pwMS with lifestyle adjustments.MethodsSemi-structured interviews were conducted with 50 pwMS in Germany. Criteria for inclusion were age ≥ 18 years and a diagnosis of relapsing-remitting Multiple Sclerosis. Data were analyzed inductively and deductively according to a six-step thematic analysis.ResultsThe three main themes for experience-based lifestyle adjustments were: 1) nutrition and supplements, 2) exercise and physical activity, and 3) stress management. Influencing factors on the decision-making process such as active disease management, information and advice, desire for mental health and social support, and the wish for self-determination were identified. Impacts of starting or maintaining lifestyle habits included, for example, MS-specific, general, and mental health benefits, the development of coping strategies, social support, and barriers that led to a termination of lifestyle adjustments.ConclusionThis study provides a rich and nuanced amount of experiences of pwMS with lifestyle adjustments and leads to three important conclusions: 1) Further research is warranted to better describe the perceived effects of lifestyle habits on MS symptoms and progression, in particular with regard to nutrition and stress reduction; 2) patient education in MS should include the available evidence on lifestyle management and 3) patients need to be actively supported in changing their lifestyle behavior.
| S-EPMC9140290 | biostudies-literature
Project description:Background and objectivesThis thematic analysis of qualitative interviews from participants in Stage II randomized controlled trial examined women's and men's experiences in group therapy for substance use disorders (SUDs).MethodsInterviews were conducted with 77 women and 38 men after completion of either the gender-specific Women's Recovery Group (WRG) or mixed-gender Group Drug Counseling (GDC). Interviews were coded for themes using a deductive approach with a coding scheme modified from the Stage I trial. Satisfaction was measured quantitatively posttreatment.ResultsParticipants had high satisfaction scores with no significant differences between groups. Women in GDC rated group gender composition as less helpful than those in WRG. In the GDC group, women more frequently discussed the theme of self-perception (e.g., feelings of comfort, safety, shame) compared with men. Men overwhelmingly expressed the benefits of having women in the group, whereas women expressed advantages and disadvantages of mixed-gender groups and preference for single-gender groups. Guilt and shame were discussed by women and men; however, only women discussed stigma and its important role in their addiction and recovery.Discussion and conclusionMen more frequently endorsed the helpfulness of mixed-gender groups than did women while women appreciated the enhanced support in single-gender SUD groups. Issues of stigma are especially salient for women.Scientific significanceMen and women express differences in their experiences of SUD group therapy. Only women endorse stigma as an obstacle to their treatment and recovery. Tailoring treatment to meet women's and men's needs may enhance engagement, retention, and clinical outcomes.
| S-EPMC8799487 | biostudies-literature
Project description:Brigham & Women's Hospital Multiple Sclerosis Genetic Collection
| PRJNA171427 | ENA
Project description:Noncommunicable diseases are long-lasting and slowly progressive and are the leading causes of death and disability. They include cardiovascular diseases (CVD) and diabetes mellitus (DM) that are rising worldwide, with CVD being the leading cause of death in developed countries. Thus, there is a need to find new preventive and therapeutic approaches. Polyphenols seem to have cardioprotective properties; among them, polyphenols and/or minor polar compounds of extra virgin olive oil (EVOO) are attracting special interest. In consideration of numerous sex differences present in CVD and DM, in this narrative review, we applied "gender glasses." Globally, it emerges that olive oil and its derivatives exert some anti-inflammatory and antioxidant effects, modulate glucose metabolism, and ameliorate endothelial dysfunction. However, as in prescription drugs, also in this case there is an important gender bias because the majority of the preclinical studies are performed on male animals, and the sex of donors of cells is not often known; thus a sex/gender bias characterizes preclinical research. There are numerous clinical studies that seem to suggest the benefits of EVOO and its derivatives in CVD; however, these studies have numerous limitations, presenting also a considerable heterogeneity across the interventions. Among limitations, one of the most relevant in the era of personalized medicine, is the non-attention versus women that are few and, also when they are enrolled, sex analysis is lacking. Therefore, in our opinion, it is time to perform more long, extensive and lessheterogeneous trials enrolling both women and men.
| S-EPMC7212338 | biostudies-literature
Project description:Objective: To report the methodology and summary data of the Health Outcomes and Lifestyle In a Sample of people with Multiple sclerosis (HOLISM) longitudinal and validation cohorts. We report (1) data on participation, socio-demographics, disease characteristics, medication use, modifiable lifestyle risk factor exposures, and health outcomes of the HOLISM longitudinal cohort 2.5-years post enrolment; (2) attrition at this 2.5-year wave; and (3) baseline characteristics of the associated HOLISM validation cohort. Methods: The HOLISM longitudinal study recruited people internationally with self-reported diagnosed multiple sclerosis (MS) through web 2.0 platforms and MS society newsletters. Participants, first recruited in 2012, were invited 2.5-years later to participate in a follow-up survey. At both time points, participants completed a comprehensive online questionnaire of socio-demographics, modifiable lifestyle exposures, and health outcomes using validated and researcher-designed tools. The same methodology was used to recruit a new sample: the HOLISM validation cohort. Characteristics were explored using summary measures. Results: Of 2,466 people with MS at baseline, 1,401 (56.8%) provided data at 2.5-year follow-up. Attrition was high, likely due to limited amount of contact information collected at baseline. Completion of the 2.5-year wave was associated with healthier lifestyle, and better health outcomes. Participants completing follow-up had diverse geographical location, were predominantly female, married, unemployed or retired. At 2.5-year follow-up, nearly 40% were overweight or obese, most were physically active, non-smokers, consumed little alcohol, used vitamin D/omega-3 supplements, and 42% reported current disease-modifying drug use. Thirty percentage of reported cane or gait disability, while 13% relied on major mobility supports (Patient Determined Disease Steps). Approximately half the respondents reported a comorbidity, 63% screened positive for clinically significant fatigue (Fatigue Severity Scale), and 22% screened positive for depression (Patient Health Questionnaire-9). The validation cohort's characteristics were mostly consistent with previously reported HOLISM baseline data. Conclusions: Exploring prospective associations of modifiable environmental/behavioral risk factors with health outcomes in this international longitudinal sample of people with MS will be beneficial to MS research. Impacts of attrition and selection bias will require consideration. The validation cohort provides opportunity for replication of previous findings, and also for temporal validation of predictive models derived from the HOLISM cohort.
| S-EPMC6299875 | biostudies-other
Project description:People with multiple sclerosis (MS) are living longer so strategies to enhance long-term health are garnering more interest. We aimed to create a profile of ageing with MS in Canada by recruiting 1250 (5% of the Canadian population above 55?years with MS) participants and focusing data collection on health and lifestyle factors, disability, participation and quality of life to determine factors associated with healthy ageing.National multicentre postal survey.Recruitment from Canadian MS clinics, MS Society of Canada chapters and newspaper advertisements.People aged 55?years or older with MS symptoms more than 20?years.Validated outcome measures and custom-designed questions examining MS disease characteristics, living situation, disability, comorbid conditions, fatigue, health behaviours, mental health, social support, impact of MS and others.Of the 921 surveys, 743 were returned (80.7% response rate). Participants (mean age 64.6±6.2?years) reported living with MS symptoms for an average of 32.9±9.5?years and 28.6% were either wheelchair users or bedridden. There was only 5.4% missing data and 709 respondents provided optional qualitative information. According to data derived from the 2012 Canadian Community Health Survey of Canadians above 55?years of age, older people with MS from this survey sample are about eight times less likely to be employed full-time. Older people with MS were less likely to engage in regular physical activity (26.7%) compared with typical older Canadians (45.2%). However, they were more likely to abstain from alcohol and smoking.Despite barriers to participation, we were able to recruit and gather detailed responses (with good data quality) from a large proportion of older Canadians with MS. The data suggest that this sample of older people with MS is less likely to be employed, are less active and more disabled than other older Canadians.
| S-EPMC4120418 | biostudies-literature
Project description:BackgroundTo investigate multiple sclerosis (MS) patients' satisfaction with out-patient follow-up in a general neurological hospital department. Patients with definite MS living in Vest-Agder county, Norway were invited to answer a questionnaire comprising one question regarding overall satisfaction, and 24 questions regarding demographics, disease characteristics, and experiences with different aspects of the health care services.ResultsOut of 330 invited patients, 159 responded (48%). Mean overall satisfaction with health care was 3.5 (SD = 1.03) on a 1-5 Likert scale (1 = not at all, 5 = to a very large extent). The best sub scores were given on confidence in the physician's competence (mean = 4.01), the physician speaks in an understandable way (mean = 4.07), expectation of good treatment (mean = 3.72), and perception of being submitted to wrong treatment (mean = 1.5). The worst scores were given on satisfaction with frequency of outpatient appointments (mean = 2.89) and delay of outpatient appointments (mean = 3.07). Four factors were associated with high overall satisfaction; receiving the disease modifying drug natalizumab (B = 0.549, p = 0.004), satisfaction with frequency of outpatient appointments (B = 0.242, p < 0.001), experience that the physician facilitates talking about what the patient finds important (B = 0.218, p = 0.001), and confidence with the physician's competence (B = 0.453, p < 0.001).ConclusionThe patients were rather satisfied with the content of follow-up, and less satisfied with the structure. Regular and predictable contact with a trustworthy physician that facilitates that the patient is able to talk about what is important was associated with higher overall satisfaction.
| S-EPMC5501112 | biostudies-literature
Project description:BackgroundMultiple Sclerosis (MS) is a chronic, degenerative condition with an estimated UK prevalence of 100 000. Contact with health-care services is frequent and long-term; however, little research has investigated the experiences of health care for MS in the UK.ObjectiveThe aim of this systematic narrative review was to critically review qualitative studies reporting patients' experiences of health-care services in the UK.Search strategyEMBASE, CINAHL, Medline, psychINFO and MS Society databases were searched with no date restrictions using search terms denoting 'Multiple Sclerosis', 'health-care services', 'patient', 'experience' and 'qualitative research'. Snowballing and hand searching of journals were used.Inclusion criteriaStudies were included if they used qualitative methods of data collection and analysis to investigate adult patient's experiences of health-care services for MS in the UK.Data extraction and synthesisData were extracted independently and analysed jointly by two reviewers. Studies were appraised for the quality of evidence described using the Critical Appraisal Skills Programme's qualitative tool. Due to the breadth of areas covered, the data were too heterogeneous for a synthesis and are presented as a narrative review.Main results and discussionFive studies were included. Studies primarily investigated diagnosis or palliative care. Themes of importance were the emotional experience of health care, continuity of care and access to services, and support from health-care professionals. Studies were mainly poor quality and focussed on a homogenous sample.ConclusionsThis study provides the first review of the UK evidence base of experiences of health care for MS. Future research should investigate experiences of care after diagnosis in a more varied sample of participants.
| S-EPMC5810635 | biostudies-literature
Project description:Women's football is gaining supporters and practitioners worldwide, raising questions about what the differences are with men's football. While the two sports are often compared based on the players' physical attributes, we analyze the spatio-temporal events during matches in the last World Cups to compare male and female teams based on their technical performance. We train an artificial intelligence model to recognize if a team is male or female based on variables that describe a match's playing intensity, accuracy, and performance quality. Our model accurately distinguishes between men's and women's football, revealing crucial technical differences, which we investigate through the extraction of explanations from the classifier's decisions. The differences between men's and women's football are rooted in play accuracy, the recovery time of ball possession, and the players' performance quality. Our methodology may help journalists and fans understand what makes women's football a distinct sport and coaches design tactics tailored to female teams.
| S-EPMC8336886 | biostudies-literature