Web-Based Health Information Seeking by People Living With Multiple Sclerosis: Qualitative Investigation of the Multiple Sclerosis Online Course.

BACKGROUND: Digital technologies have afforded people living with multiple sclerosis (MS) access to telehealth consultations, diagnostic tools, and monitoring. Although health care professionals remain the most trusted source of information, the internet has emerged as a valuable resource for providing MS-related information, particularly during the COVID-19 pandemic. Notably, people living with MS are increasingly seeking educational content for a range of topics related to the self-management of MS; however, web-based information seeking remains largely underevaluated. To address this gap and ensure that web-based health-related information is accessible and engaging, this study used qualitative methods to analyze the reflections from participants of web-based educational programs for people living with MS. OBJECTIVE: This study aimed to explore the motivations, behaviors, and expectations of web-based health information seeking for people living with MS. METHODS: We conducted semistructured interviews for 38 people living with MS 1 month after they completed the novel MS Online Course, which provided information on modifiable lifestyle-related risk factors for people living with MS. Of the 38 participants, 22 (58%) completed the intervention course and 16 (42%) completed the standard care course. Inductive thematic analysis was used within a qualitative paradigm, and 2 authors coded each interview separately and arrived at themes with consensus. RESULTS: We identified 2 themes: motivation to learn and MS information on the web. The diagnosis of MS was described as a pivotal moment for precipitating web-based information seeking. People living with MS sought lifestyle-related information to facilitate self-management and increase control of their MS. Although social media sites and MS websites were considered useful for providing both support and information, discretion was needed to critically appraise information. Recognizable institutions were frequently accessed because of their trustworthiness. CONCLUSIONS: This study provided novel insights into the motivations of people living with MS for seeking web-based health information. Furthermore, their preferences for the content and format of the web-based information accessed and their experiences and reactions to this information were explored. These findings may guide educators, researchers, and clinicians involved in MS care to optimize the engagement and processing of web-based health information seeking by people living with MS.

Engagement with three or more healthy lifestyle behaviours is associated with improved quality of life over 7.5 years in people with multiple sclerosis.

BACKGROUND AND PURPOSE: People with multiple sclerosis (pwMS) report reduced quality of life (QoL). Engagement with healthy lifestyle behaviours, including consuming a healthy diet, regular physical activity, and adequate vitamin D exposure, is associated with higher QoL. We aim to assess whether individual lifestyle behaviours are more beneficial to QoL than others, and whether there are additive benefits to QoL by engaging in multiple healthy behaviours concurrently. METHODS: Data from pwMS who completed an online survey at baseline, and at 2.5-, 5- and 7.5-year follow-up, were analysed. Behaviours assessed were consumption of a no-meat/dairy-plus-omega-3 supplementation diet, meditation practice, physical activity, non-smoking, and vitamin D exposure. Mental QoL (mQoL) and physical QoL (pQoL) were assessed by the Multiple Sclerosis Quality of Life (MSQOL-54) questionaire. Linear regression analyses were performed to assess associations of individual behaviours at baseline and follow-up time points with QoL, as well as between number of behaviours and QoL. RESULTS: At baseline, healthy diet and regular physical activity were associated with higher mQoL (5.3/100 and 4.0/100) and higher pQoL (7.8/100 and 6.7/100). Prospectively, diet was positively associated with mQoL, and physical activity with both mQoL and pQoL. At baseline, engagement with ≥3 behaviours was positively associated with mQoL and pQoL, with additive positive associations for each additional behaviour. Prospectively, engagement with ≥3 behaviours was positively associated with mQoL and pQoL, with strongest associations observed with engagement with five behaviours. CONCLUSION: Consumption of a healthy diet, and regular physical activity, are both potential interventions to improve QoL. Engagement with multiple lifestyle behaviours may provide additional benefits and should be encouraged and supported for multiple sclerosis management.

Longitudinal associations between quality of diet and disability over 7.5 years in an international sample of people with multiple sclerosis.

BACKGROUND AND PURPOSE: Modifiable lifestyle factors, including diet, have been implicated in multiple sclerosis (MS) progression, but prospective evidence is limited. The aim of this study was to examine prospective relationships between quality of diet and subsequent disability over 7.5 years in an international cohort of people living with MS (pwMS). METHODS: Data from 602 participants in the HOLISM (Health Outcomes and Lifestyle In a Sample of people with Multiple sclerosis) study were analysed. Quality of diet was assessed using the modified Diet Habits Questionnaire (DHQ). Disability was assessed using the Patient-determined MS Severity Score (P-MSSS). Characteristics of disability were assessed by log-binomial, log-multinomial and linear regression, adjusted for demographic and clinical covariates, as appropriate. RESULTS: Higher baseline total DHQ scores (>80-89, >89%) were associated with lower risks of increased P-MSSS at 7.5 years (adjusted risk ratio [aRR] 0.46, 95% confidence interval [CI] 0.23, 0.91 and aRR 0.48, 95% CI 0.26, 0.89, respectively), and with less P-MSSS accrual (aß = -0.38, 95% CI -0.78, 0.01 and aß = -0.44, 95% CI -0.81, -0.06). Of the DHQ domains, fat subscore was most strongly associated with subsequent disability. Participants with reducing baseline-to-2.5- years total DHQ scores had greater risk of increased P-MSSS at 7.5 years (aRR 2.77, 95% CI 1.18, 6.53) and higher P-MSSS accrual (aß = 0.30, 95% CI 0.01, 0.60). Participants reporting baseline meat and dairy consumption had greater risk of increased P-MSSS at 7.5 years (aRR 2.06, 95% CI 1.23, 3.45 and aRR 2.02, 95% CI 1.25, 3.25) and higher P-MSSS accrual (aß = 0.28, 95% CI 0.02, 0.54 and aß = 0.43, 95% CI 0.16, 0.69, respectively). However, reported meat consumption was confounded by quality of diet. Changes in meat or dairy consumption from baseline were inconsistently associated with subsequent disability. CONCLUSIONS: We show for the first time robust long-term associations between quality of diet and subsequent disability progression in pwMS. Subject to replication, dietary modification may represent a point of intervention for reducing disability in pwMS.

Study protocol for an online lifestyle modification education course for people living with multiple sclerosis: the multiple sclerosis online course (MSOC).

BACKGROUND: People living with multiple sclerosis (plwMS) seek access to information on evidence-based lifestyle-related risk factors associated with multiple sclerosis (MS). As the internet has made delivery of lifestyle information increasingly accessible and cost-effective, we designed the Multiple Sclerosis Online Course (MSOC) to deliver a multimodal lifestyle modification program for plwMS. Two MS online courses were developed: the intervention course based on lifestyle recommendations of the Overcoming Multiple Sclerosis (OMS) program and the standard-care course representing standard lifestyle recommendations from other MS websites. We examined for feasibility in a pilot randomised controlled trial (RCT), where satisfactory completion and accessibility were achieved across both study arms. From this success, a protocol for a larger RCT was developed to examine the effectiveness of MSOC in improving health-related quality of life (HRQoL) and other health outcomes in plwMS. METHODS/DESIGN: This single-blinded RCT will recruit n = 1,054 plwMS. Participants in the intervention arm will receive access to a MSOC with seven modules providing evidence-based information on the OMS program. Participants in the control group will receive access to a MSOC of identical format, with seven modules providing general MS-related information and lifestyle recommendations sourced from popular MS websites, e.g. MS societies. Participants will complete questionnaires at baseline and at 6, 12, and 30 months after course completion. The primary endpoint is HRQoL, as measured by MSQOL-54 (both physical and mental health domains) at 12 months following course completion. Secondary outcomes are changes to depression, anxiety, fatigue, disability, and self-efficacy as measured by Hospital Anxiety and Depression Scale, Patient-Determined Disease Steps and University of Washington Self-Efficacy Scale, respectively, assessed at each timepoint. Further assessments will include quantitative post-course evaluation, adoption and maintenance of behaviour change from follow-up survey data, and qualitative analysis of participants' outcomes and reasons for course completion or non-completion. DISCUSSION: This RCT aims to determine whether an online intervention course delivering evidence-based lifestyle modification recommendations based on the Overcoming Multiple Sclerosis program to plwMS is more effective at improving HRQoL, and other health outcomes post-intervention, compared with an online standard-care course. TRIAL REGISTRATION: This trial was registered prospectively with the Australian New Zealand Clinical Trials Registry, www.anzctr.org.au , identifier ACTRN12621001605886. DATE OF REGISTRATION: 25 November 2021.

Applying multidimensional computerized adaptive testing to the MSQOL-54: a simulation study.

BACKGROUND: The Multiple Sclerosis Quality of Life-54 (MSQOL-54) is one of the most commonly-used MS-specific health-related quality of life (HRQOL) measures. It is a multidimensional, MS-specific HRQOL inventory, which includes the generic SF-36 core items, supplemented with 18 MS-targeted items. Availability of an adaptive short version providing immediate item scoring may improve instrument usability and validity. However, multidimensional computerized adaptive testing (MCAT) has not been previously applied to MSQOL-54 items. We thus aimed to apply MCAT to the MSQOL-54 and assess its performance. METHODS: Responses from a large international sample of 3669 MS patients were assessed. We calibrated 52 (of the 54) items using bifactor graded response model (10 group factors and one general HRQOL factor). Then, eight simulations were run with different termination criteria: standard errors (SE) for the general factor and group factors set to different values, and change in factor estimates from one item to the next set at < 0.01 for both the general and the group factors. Performance of the MCAT was assessed by the number of administered items, root mean square difference (RMSD), and correlation. RESULTS: Eight items were removed due to local dependency. The simulation with SE set to 0.32 (general factor), and no SE thresholds (group factors) provided satisfactory performance: the median number of administered items was 24, RMSD was 0.32, and correlation was 0.94. CONCLUSIONS: Compared to the full-length MSQOL-54, the simulated MCAT required fewer items without losing precision for the general HRQOL factor. Further work is needed to add/integrate/revise MSQOL-54 items in order to make the calibration and MCAT performance efficient also on group factors, so that the MCAT version may be used in clinical practice and research.

Higher diet quality is associated with short and long-term benefits on SF-6D health state utilities: a 5-year cohort study in an international sample of people with multiple sclerosis.

BACKGROUND/PURPOSE: Health state utilities (HSU) are a subjective measure of an individual's health-related quality of life (HRQoL), adjusted by societal or patient relative preference weights for living in different states of health-related quality of life (HRQoL), derived from patient-reported responses to multi-attribute utility instrument (MAUI), and can be used as inputs for cost-utility analyses and in clinical assessment. This research assessed associations of diet with subsequent HSU in a large international cohort of people living with multiple sclerosis (MS), a progressive autoimmune condition of the central nervous system. METHODS: HSUs were generated from responses to Short-Form Six-Dimension (SF-6D) MAUI, and quality-of-the-diet by Diet Habits Questionnaire (DHQ). Cross-sectional, and short- and long-term prospective associations of DHQ with HSU evaluated by linear regression at 2.5- and 5-years. Pooled prospective associations between DHQ and HSU evaluated using linear and quantile regression. Analyses adjusted for relevant demographic and clinical covariates. RESULTS: Among 839 participants, baseline DHQ scores showed short- and long-term associations with subsequent HSU, each 10-unit increase in total DHQ score associated with 0.008-0.012 higher HSU (out of 1.00). These associations were dose-dependent, those in the top two quartiles of baseline DHQ scores having 0.01-0.03 higher HSU at follow-up, 0.03 being the threshold for a minimally clinically important difference. Fat, fiber, and fruit/vegetable DHQ subscores were most strongly and consistently associated with better HSU outcomes. However, baseline meat and dairy consumption were associated with 0.01-0.02 lower HSU at subsequent follow-up. CONCLUSIONS: A higher quality-of-the-diet showed robust prospective relationships with higher HSUs 2.5- and 5-years later, substantiating previous cross-sectional relationships in this cohort. Subject to replication, these results suggest interventions to improve the quality-of-the-diet may be effective to improve HRQoL in people living with MS.

Higher-quality diet and non-consumption of meat are associated with less self-determined disability progression in people with multiple sclerosis: A longitudinal cohort study.

BACKGROUND AND PURPOSE: Modifiable lifestyle factors, including diet, may affect clinical outcomes in multiple sclerosis (MS). This study assessed the relationships between diet, and disability, fatigue, and depression risk in people with MS. METHODS: Participants from the Health Outcomes and Lifestyle In a Sample of people with Multiple sclerosis (HOLISM) international cohort were assessed over 2.5 years. Dietary data were obtained using a modified Diet Habits Questionnaire (DHQ), disability using the calculated Patient-determined MS Severity Score (P-MSSS), fatigue using the Fatigue Severity Scale, and depression risk using the Patient Health Questionnaire-2. Participants reported whether they were experiencing symptoms due to a recent relapse. Cross-sectional and prospective relationships of diet and disease outcomes were explored, adjusted for relevant confounders. RESULTS: Among 1,346 participants, higher DHQ scores showed significant dose-dependent associations with lower frequencies of severe disability, fatigue, and depression risk, cross-sectionally. Prospectively, higher baseline DHQ scores were associated with a lower risk of increasing disability, those above the median having 41% and 36% lower risk of increasing disability, and 0.30 P-MSSS points less disability progression, but were not associated with fatigue or depression risk. Meat consumption was associated with 0.22 P-MSSS points higher disability cross-sectionally, while prospectively, baseline meat consumption was associated with 76% higher risk of increasing disability and 0.18 P-MSSS points higher disability progression. Dairy consumption showed mixed associations cross-sectionally and prospectively. CONCLUSIONS: These results show that better quality of diet, as well as not consuming meat, were associated with reduced disability progression in people with MS. Substantiation of these findings in other settings may inform opportunities to manage disability progression in people with MS using dietary modifications.

Greater mastery is associated with lower depression risk in a large international cohort of people with multiple sclerosis over 2.5 years.

BACKGROUND: Mastery is the extent to which an individual perceives their life circumstances as being under their control and not predominantly influenced by external factors. The relationship of mastery with clinical outcomes in people with multiple sclerosis (pwMS) has not been well-researched. We assessed the relationships of mastery with fatigue, disability, relapse number, and depression risk among pwMS over 2.5 years' follow-up. METHODS: Data from the Health Outcomes and Lifestyle in a Sample of people with Multiple sclerosis study, among 839 participants who completed the 2.5 and 5-year reviews, were analysed. Mastery was measured by the Pearlin Mastery Scale, fatigue by Fatigue Severity Scale, depression risk by Patient Health Questionnaire-9, and disability by Patient-Determined Disease Steps, and diagnosed relapse number in the previous 12 months was queried. Cross-sectional and prospective analyses were undertaken by log-binomial, log-multinomial, and Poisson regression, as appropriate, adjusted for relevant confounders. RESULTS: Cross-sectionally, pwMS with the highest quartile mastery (> 25/28) had 90% lower frequency of depression risk, 60% lower frequency of clinically significant fatigue, and 77% fewer had severe disability, all largely robust to adjustment. Prospectively, those in the top two quartiles of mastery (> 21-25, > 25/28) had 66% and 74% lower subsequent depression risk, robust to adjustment. No significant associations were seen prospectively for change in fatigue, disability, or relapse number, however, and no robust associations of mastery with relapse number were evident. CONCLUSIONS: Prospectively, a protective relationship of mastery with subsequent risk of depression was observed, suggesting this may be a point of intervention to improve wellbeing in pwMS.

Experiences of and attitudes to lifestyle modification for the management of multiple sclerosis: A qualitative analysis of free-text survey data.

BACKGROUND: Growing evidence suggests a role of lifestyle modification in improved health outcomes for people with multiple sclerosis (pwMS); however, perspectives of pwMS who engage in lifestyle modification are lacking. OBJECTIVE: We explored perspectives of pwMS regarding the modification of lifestyle-related risk factors in multiple sclerosis (MS) for disease management to understand attitudes to and experiences of lifestyle modification as part of self-management from a patient perspective. DESIGN: Participants were ≥18 years and English speaking who responded to a free-text open-ended question in the Health Outcomes and Lifestyle In a Sample of pwMS (HOLISM), an international online survey. Responses were analysed utilizing inductive thematic analysis. RESULTS: Under the exploration of lifestyle modification, themes describing the experiences and attitudes of participants included practical challenges and physical and psychological barriers, enablers of change and experienced outcomes. Although participants reported some practical and psychological challenges to adoption and maintenance of lifestyle behaviours, many expressed an ability to gain control of MS through engagement with lifestyle behaviours and the development of hope and optimism that accompanied this sense of control, at times leading to a sense of personal transformation. CONCLUSION: Findings highlight the challenges experienced by pwMS in adopting lifestyle modifications for disease management as well as the positive benefits from following healthy lifestyle behaviours. Our findings may form the basis of more focussed qualitative explorations of the experiences and outcomes of lifestyle modification in MS in the future. PATIENT CONTRIBUTION: Consenting pwMS completed a survey capturing data on demographics, clinical course, lifestyle behaviours and health outcomes.

Attrition Within Digital Health Interventions for People With Multiple Sclerosis: Systematic Review and Meta-analysis.

BACKGROUND: Digital health interventions have revolutionized multiple sclerosis (MS) care by supporting people with MS to better self-manage their disease. It is now understood that the technological elements that comprise this category of digital health interventions can influence participant engagement in self-management programs, and people with MS can experience significant barriers, influenced by these elements, to remaining engaged during a period of learning. It is essential to explore the influence of technological elements in mitigating attrition. OBJECTIVE: This study aimed to examine the study design and technological elements of documented digital health interventions targeted at people with MS-digital health interventions that were intended to support a program of engagement over a defined period-and to explore how these correlated with attrition among participants of randomized controlled trials (RCTs). METHODS: We conducted a systematic review and meta-analysis of RCTs (n=32) describing digital health self-management interventions for people with MS. We analyzed attrition in included studies, using a random-effects model and meta-regression to measure the association between potential moderators. RESULTS: There were no measured differences in attrition between the intervention and control arms; however, some of the heterogeneity observed was explained by the composite technological element score. The pooled attrition rates for the intervention and control arms were 14.7% and 15.6%, respectively. CONCLUSIONS: This paper provides insight into the technological composition of digital health interventions designed for people with MS and describes the degree of attrition in both study arms. This paper will aid in the design of future studies in this area, particularly for digital health interventions of this type.

Two healthy lifestyle scores are associated with lower subsequent fatigue risk using inverse probability weighting in an international longitudinal cohort of people with multiple sclerosis.

BACKGROUND AND PURPOSE: Several modifiable lifestyle factors have been associated with the onset and health outcomes of multiple sclerosis (MS), including clinically significant fatigue. A combined lifestyle score approach represents one method of assessing their relationship with clinical outcomes. The aim was to examine the association of two lifestyle scores with clinically significant fatigue and change thereof over 2.5 years' follow-up using inverse probability treatment weighting (IPTW). METHODS: Data on sociodemographic, lifestyle, and clinical characteristics surveyed from an international cohort of people with MS at baseline and at 2.5-year follow-up were used. Fatigue was defined by the Fatigue Severity Scale (FSS >5) and healthy lifestyle by the Healthy Lifestyle Index Score (HLIS) and the Smoking, Nutrition, Alcohol Consumption and Physical Activity (SNAP) score. Analyses were by IPTW accounting for age, sex, MS type, disability, treated comorbidity number, immunomodulatory medication use, prescription antifatigue medication use, and ongoing relapse symptoms. RESULTS: In total, 1268 participants completed the FSS at both time points; approximately 62% had fatigue. Using doubly robust IPTW, high (>11/20) HLIS (odds ratio [OR] 0.90, 95% confidence interval [CI] 0.81-0.98) and high (>3/5) SNAP (OR 0.82, 95% CI 0.73-0.90) were each associated with lower risk of fatigue at follow-up. Evaluating change in fatigue, a higher SNAP score was associated with a lower risk of fatigue (OR 0.89, 95% CI 0.80-0.97) but the score for HLIS did not reach statistical significance (OR 0.93, 95% CI 0.85-1.01). CONCLUSION: These results suggest a robust role for key lifestyle factors in preventing clinically significant fatigue and may represent a place for lifestyle modification in improving clinical outcomes in MS.

Viability of a MSQOL-54 general health-related quality of life score using bifactor model.

BACKGROUND: MSQOL-54 is a multidimensional, widely-used, health-related quality of life (HRQOL) instrument specific for multiple sclerosis (MS). Findings from the validation study suggested that the two MSQOL-54 composite scores are correlated. Given this correlation, it could be assumed that a unique total score of HRQOL may be calculated, with the advantage to provide key stakeholders with a single overall HRQOL score. We aimed to assess how well the bifactor model could account for the MSQOL-54 structure, in order to verify whether a total HRQOL score can be calculated. METHODS: A large international database (3669 MS patients) was used. By means of confirmatory factor analysis, we estimated a bifactor model in which every item loads onto both a general factor and a group factor. Fit of the bifactor model was compared to that of single and two second-order factor models by means of Akaike information and Bayesian information criteria reduction. Reliability of the total and subscale scores was evaluated with Mc Donald's coefficients (omega, and omega hierarchical). RESULTS: The bifactor model outperformed the two second-order factor models in all the statistics. All items loaded satisfactorily (≥ 0.40) on the general HRQOL factor, except the sexual function items. Omega coefficients for total score were very satisfactory (0.98 and 0.87). Omega hierarchical for subscales ranged between 0.22 to 0.57, except for the sexual function (0.70). CONCLUSIONS: The bifactor model is particularly useful when it is intended to acknowledge multidimensionality and at the same time take account of a single general construct, as the HRQOL related to MS. The total raw score can be used as an estimate of the general HRQOL latent score.

SF-6D health state utilities for lifestyle, sociodemographic and clinical characteristics of a large international cohort of people with multiple sclerosis.

BACKGROUND: While many studies have examined the impacts of multiple sclerosis (MS) on health-related quality of life (HRQoL), none have used the SF-6D multi-attribute utility instrument in a large international cohort (> 2000 subjects) of people with MS. OBJECTIVES: To derive SF-6D health state utilities (HSUs) for participants of the HOLISM (Health Outcomes and Lifestyle In a Sample of people with Multiple Sclerosis) international cohort and to describe the distribution and determinants thereof. METHODS: HSUs were generated using the SF-6D for participants with sufficient SF-36 data [n = 2185/2466 (88.6%)]. Mean HSUs for sociodemographic, clinical and modifiable lifestyle factors (including diet, physical activity, supplement use) were evaluated. Determinants of HSU were then evaluated by linear regression, adjusted for age, sex, MS type, disability, fatigue, and prescription antidepressant use. RESULTS: Mean HSU for the sample was 0.67 (SD = 0.13) and diminished with increasing MS-related disability, robust to adjustment, supporting the SF-6D's discriminatory power in people with MS. Severe disability and clinically significant fatigue were each associated with 11% lower HSU (95% CI = - 0.13, - 0.10 and - 0.12, - 0.10), and depression risk with 10%-lower HSU (95% CI = - 0.11, - 0.08). Employment, higher socioeconomic and married/partnered statuses, larger social-network size, greater physical activity, and vitamin D and omega-3 supplement use were associated with significantly higher HSU, and overweight/obese BMI and tobacco smoking with lower HSU. Age, sex, and education were not associated. CONCLUSION: Modifiable lifestyle factors including healthy diet, increased physical activity and supplement use were associated with higher HRQOL among people with MS. The SF-6D instrument revealed significant discriminatory power in this international cohort of people with MS.

Assessing measurement invariance of MSQOL-54 across Italian and English versions.

PURPOSE: The Multiple Sclerosis Quality of Life-54 (MSQOL-54) is a specific multiple sclerosis (MS) health-related quality of life inventory consisting of 52 items organized into 12 subscales plus two single items. No study was found in literature assessing its measurement invariance across language versions. We investigated whether MSQOL-54 items provide unbiased measurements of underlying constructs across Italian and English versions. METHODS: Three constrained levels of measurement invariance were evaluated: configural invariance where equivalent numbers of factors/factor patterns were required; metric invariance where equivalent factor loadings were required; and scalar invariance where equivalent item intercepts between groups were required. Comparative fit index (CFI), root mean square error of approximation (RMSEA), and standardized root mean square residual (SRMR) fit indices and their changes between nested models were used to assess tenability of invariance constraints. RESULTS: Overall, the dataset included 3669 MS patients: 1605 (44%) Italian, mean age 41 years, 62% women, 69% with mild level of disability; 2064 (56%) English-speaking (840 [41%] from North America, 797 [39%] from Australasia, 427 [20%] from UK and Ireland), mean age 46 years, 83% women, 54% with mild level of disability. The configural invariance model showed acceptable fit (RMSEA = 0.052, CFI = 0.904, SRMR = 0.046); imposing loadings and intercepts equality constraints produced negligible worsening of fit (ΔRMSEA < 0.001, ΔCFI = - 0.002, ΔSRMR = 0.002 for metric invariance; ΔRMSEA = 0.003, ΔCFI = - 0.013, ΔSRMR = 0.003 for scalar invariance). CONCLUSIONS: These findings support measurement invariance of the MSQOL-54 across the two language versions, suggesting that the questionnaire has the same meaning and the same measurement paramaters in the Italian and English versions.

Predictors of Change in Employment Status and Associations with Quality of Life: A Prospective International Study of People with Multiple Sclerosis.

Purpose This prospective international study aimed to assess the changes in employment, and predictors thereof, and associated change in mental health quality of life in people with multiple sclerosis (MS). Methods People with MS were recruited online through social media, forums and newsletters to complete an online English-language survey in 2012 and again in 2015, to assess changes in employment and clinical characteristics. Results 1276 people with MS of working age were included of whom 35.9% were employed full time, 25.6% part-time, 3.1% were unemployed and seeking employment, 19.7% were retired due to disability and 15.7% were not in the labour force. Part/full time employment decreased from 61.4 to 57.1% of the sample 2.5 years later, and 25.5% experienced some change in employment status. Lower level of education and higher level of disability at baseline predicted loss of employment at follow-up. 62.0% of the sample indicated that MS impacted on employment over their lifetime, associated with a lower level of education and progressive MS at time of diagnosis. Retiring due to disability was predictive of a decreased mental health related QOL score. Conclusion Employment status was negatively impacted by MS for most participants. We showed for the first time that employment loss was prospectively associated with poorer mental health related quality of life. Employment support including vocational services, reasonable flexibility in the workplace, and legal protection against discrimination should be widely available to assist people with MS, especially for those with progressive onset MS, higher disability and lower levels of education who are at higher risk of employment loss.

Effectiveness of Exercise Interventions for Pain Reduction in People With Multiple Sclerosis: A Systematic Review and Meta-analysis of Randomized Controlled Trials.

OBJECTIVE: To systematically review the evidence of the effect of exercise compared with passive control on pain in people with multiple sclerosis. DATA SOURCE AND STUDY SELECTION: Five electronic databases were searched for randomized controlled trials published up to March 2017 that recruited people with multiple sclerosis where exercise was the intervention and pain was an outcome (PROSPERO registration number CRD42017060489). STATISTICAL ANALYSIS: A random-effects meta-analysis was conducted to estimate the standardized mean difference of the effect of exercise on pain between treatment and control groups. We assessed risk of bias, fitted meta-regression models to explore heterogeneity between studies, and assessed small study effects. DATA SYNTHESIS: Ten studies met the inclusion criteria (total sample size=389), and all studies were at high risk of bias. We found that exercise interventions were associated with less pain compared with passive control groups (standardized mean difference=-.46; 95% CI, -.92 to .00). There was high between-study heterogeneity (I2=77.0%), which was not explained by the prespecified study characteristics. There was also some evidence of small study effects. CONCLUSION: This is the first systematic review of the effect of exercise interventions on pain in people with multiple sclerosis, a chronic neurological disorder that affects 2.5 million people. We found some evidence that exercise compared with passive control alleviates pain in this population, but there were limitations in reporting and study quality with high risk of bias of individual studies and heterogeneity between studies.

A Narrative Review of Lifestyle Factors Associated with Parkinson's Disease Risk and Progression.

Parkinson's disease is a complex slowly progressive neurodegenerative disorder with motor and non-motor symptoms affecting daily living. Despite effective symptomatic treatments, with various degrees of side effects, no disease-modifying therapeutic options presently exist. Symptoms progress, with an accumulating burden, reducing the quality of life and forming the impression that medications are no longer effective. Adopting positive lifestyle behaviours can empower patients, improve the quality of life, alleviate symptoms, and potentially slow disease progression. Lifestyle behaviours including nutrition, cognitive enrichment, physical activity, and stress management have beneficial effects on brain health and quality of life. While some evidence of an association of lifestyle with Parkinson's disease risk and progression exists, the sparse and often conflicting data make it difficult to provide clinical recommendations. Herein, we highlight studies showing promising associations between lifestyle and Parkinson's disease. Given the increasing aging of populations worldwide and the prevalence of neurological disorders, further research into self-management through adoption of positive lifestyle behaviours is clearly warranted to better enable individualized care.

The experiences of patients with advanced cancer and caregivers presenting to Emergency Departments: A qualitative study.

BACKGROUND: Despite being a common event in the course of an advanced cancer illness, there is little understanding of patients' perceptions of hospital Emergency Department presentations. AIM: To explore the experiences and perceptions of Emergency Departments held by patients with advanced cancer and their informal caregivers. DESIGN: Cross-sectional study involving semi-structured interviews with advanced cancer patients and their informal caregivers. Qualitative data analysis was underpinned by a phenomenological approach utilising a data-driven inductive thematic frame. SETTING/PARTICIPANTS: In total, 19 patients with advanced cancer who presented to Emergency Departments in the previous 6 months and 10 informal caregivers from an Australian public hospital and community palliative care service were interviewed. RESULTS: Patients reported that Emergency Department presentations were largely prompted by worsening symptoms or were a means to expedite hospital admission, with many instructed to attend by their health care provider. The experience in the Emergency Department was described as a time of anxiety and uncertainty with concerns over communication, the general environment and delays in the symptom management highlighted. Long waits were common. Despite this, patients described relief at receiving care. While the Emergency Department was viewed as a safety net for the health system, many believed advanced cancer patients should have alternative options. CONCLUSION: Relatively simple changes of regular communication updates and early symptom relief would improve patient experience of Emergency Department care. However, since an Emergency Department presentation is frequently serving as a default to access medical care, a significant re-orientation of the health care system is required to meet patient needs.

Lifestyle, medication and socio-demographic determinants of mental and physical health-related quality of life in people with multiple sclerosis.

BACKGROUND: Health-related quality of life (QOL) is a key outcome for people with multiple sclerosis (MS). While modifiable lifestyle factors, like smoking, physical activity and vitamin D, have strong associations with development and progression of MS, few studies have examined such associations with QOL. METHODS: Using patient-reported data from 2312 people with MS from 54 countries, regression models explored associations of socio-demographic, therapeutic and lifestyle factors with QOL, using the Multiple Sclerosis Quality of Life-54 (MSQOL-54). RESULTS: Participants were on average 45.6 years old, 82.4% women, mostly partnered (74.1%), with a university degree (59.5%). Controlling for socio-demographic factors and disability, factors associated with better physical health composite (PHC) (on a 100 point scale) were: moderate and high physical activity compared to low (5.9 [95% confidence interval: 4.2, 7.6] and 9.9 [CI: 8.1, 11.6] points higher score respectively); non-smoking compared to current smoking (4.6 points [CI: 2.4, 6.7]); better diet (per 10 points on the 100 point Diet Habits Questionnaire scale (DHQ) 1.6 points [CI: 1.0, 2.2] points); normal body mass index (BMI) versus overweight or obese (2.1 points [CI: 0.4, 3.7] and 2.4 points [CI: 0.5, 4.3]); fewer comorbidities (4.4 points [CI: 3.9, 4.9]); and not taking a disease-modifying drug (DMD) (2.1 points [CI: 0.7, 3.4]). Better mental health composite (MHC) determinants were: moderate and high physical activity compared to low (4.0 points [CI: 2.0, 6.0] and 5.7 points [CI: 3.5, 8.0]); non-smoking compared to current (6.7 points [CI: 4.1, 9.3]); better diet (2.8 points [CI: 1.9, 3.5]); normal BMI versus overweight or obese (3.1 points [CI: 1.1, 5.1] and 3.5 points [CI: 1.3, 5.7]); meditating regularly (2.2 points [CI: 0.2, 4.2]); and no DMD use (2.9 points [CI: 1.3, 4.6]). CONCLUSIONS: While causality cannot be concluded from cross-sectional data, the associations between modifiable lifestyle factors and QOL suggest significant potential for secondary prevention of the known deterioration of QOL for people with MS through lifestyle risk factor modification.

Sexual function in multiple sclerosis and associations with demographic, disease and lifestyle characteristics: an international cross-sectional study.

BACKGROUND: Sexual dysfunction (SD) is very common in people with multiple sclerosis (PwMS) and contributes a significant burden of disease, particularly for young people. SD has direct neurological contributions from depression and fatigue, which occur commonly in PwMS. Modifiable factors may represent potential targets for treatment and prevention of SD. We aimed to assess the prevalence of SD and explore associations between SD and demographic and modifiable risk factors, as well as depression and fatigue in a large cohort of PwMS. METHODS: We analysed self-reported data from a large, international sample of PwMS recruited via Web 2.0 platforms, including demographic, lifestyle and disease characteristics. Specific sexual function questions included 4 items from the sexual function scale and 1 item regarding satisfaction with sexual function, part of the MS Quality of Life-54 instrument. RESULTS: 2062 PwMS from 54 countries completed questions on sexual function. 81.1 % were women, mean age was 45 years, most (62.8 %) reported having relapsing-remitting MS. The majority (54.5 %) reported one or more problems with sexual function and were classified as having SD. Lack of sexual interest (41.8 % of women), and difficulty with erection (40.7 % of men) were most common. The median total sexual function score was 75.0 out of 100, and 43.7 % were satisfied with their sexual function. Regression modeling revealed independent associations between sexual function and satisfaction and a range of demographic factors, including age, as well as depression risk, antidepressant use, and fatigue in PwMS. CONCLUSION: This cross-sectional study shows that SD and lack of satisfaction with sexual function are associated with depression risk and fatigue, as well as modifiable lifestyle factors diet and physical activity (after adjusting for depression and fatigue). Planned longitudinal follow-up of this sample may help clarify these associations and the underlying mechanisms. There is potential to prevent and treat SD in PwMS by addressing depression and fatigue and their determinants. Clinicians and PwMS should be aware of SD and associated factors as part of a comprehensive preventive approach to managing MS.