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.

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.

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.

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.

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.

Collaboration between the coroner and emergency physicians: efforts to improve outcomes from aortic dissection.

The Coroners Prevention Unit at the Coroners Court of Victoria (CCV) is a multidisciplinary team that investigates deaths referred by the state's coroners, with a view to identifying prevention opportunities. The death of a woman from acute aortic dissection (AAD) after an emergency department attendance prompted the coroner to request a roundtable meeting with emergency physicians (EPs) from Melbourne. The round table was attended by 17 EPs from Melbourne hospitals, along with representatives from the CCV. The meeting identified important clinical, system and cultural features of AAD presentation and management that might be useful in improving case detection and management, and hence outcomes. A key recommendation was that EPs teach junior staff that AAD is the "subarachnoid haemorrhage of chest pain", to change the way patients with chest pain are assessed, with an emphasis on red flags for AAD being considered at the beginning of any discussion. This innovative collaboration between the CCV and EPs may serve as a model for future interactions between the CCV and the medical profession.

Stressful life events and depression and fatigue in people with multiple sclerosis: a cross-sectional analysis of an international cohort.

BACKGROUND: Relationships between stressful life events (SLEs) and health outcomes in people living with multiple sclerosis (plwMS), beyond relapse, are not well-established. We examined associations between SLEs and fatigue and symptoms of depression in plwMS. METHODS: 948 participants were queried whether they had experienced any of the 16 SLEs (Holmes-Rahe Social Readjustment Rating Scale) in the preceding 12 months. SLEs were summated to estimate SLE number and SLE load (weighted for the degree of associated stress). Cross-sectional associations between SLE (number, load and individual) and fatigue, and depressive symptoms were examined using log-binomial or log-multinomial regression adjusted for age, sex, relapse symptoms, education, MS type at baseline, disability, fatigue, comorbidity, depression, and antidepressant/antifatigue medications, as appropriate. Sub-analyses restricted to SLEs with a negative emotional impact were performed. RESULTS: Median SLE number and load were 2 (IQR 1-2) and 57 (IQR 28-97), respectively. SLE number and load were not associated with a higher prevalence of fatigue, or depressive symptoms, even when restricting analyses to SLEs with a perceived negative emotional impact. A new relationship or family member with a negative impact was associated with a threefold and 2.5-fold higher prevalence of depressive symptoms, respectively. Serious illness was associated with a 28% higher prevalence of depressive symptoms. CONCLUSION: Psychological support for SLEs, and/or intervention targeted to SLE appraisal, may be beneficial in mitigating the adverse effects of SLEs with a perceived negative emotional impact on depressive symptoms in plwMS. Potential associations between serious illness and increased prevalence of depressive symptoms may warrant further investigation.

Non-reporting of reportable deaths to the coroner: when in doubt, report.

OBJECTIVE: To better understand the non-reporting of reportable deaths by determining the frequency and nature of reportable deaths referred to the Coroners Court of Victoria (CCOV) by the Registry of Births, Deaths and Marriages (BDM). DESIGN AND SETTING: Review of referrals from BDM to the CCOV between 2003 and 2011 where an external cause of death was recorded on the death certificate, with detailed review for the period 1 July 2010 to 30 June 2011. MAIN OUTCOME MEASURES: Frequency and nature of deaths referred, accuracy of cause of death recorded on death certificate, and degree of change made to cause of death after investigation. RESULTS: Over 9 years, there were 4283 referrals (annual mean, 476). Of 656 deaths referred between 1 July 2010 and 30 June 2011, 320 (48.8%) were found to be reportable. Most causes of death related to injuries; less common were choking, deaths after medical procedures, poisoning and transport-related deaths. Most of the deceased were women (55.9%), were aged ≥ 80 years (80.0%), and died in hospital (68.4%). In 309 cases (96.6%), the coroner changed the cause of death after investigation, with a major change in 146 (45.6%), minor change in 160 (50.0%), and deletion of comorbidities in three (0.9%). Twenty-one cases (6.6%) were investigated further, with one proceeding to an inquest. CONCLUSIONS: Deaths referred by BDM represent a proportion of the unquantified pool of non-reported deaths. Non-reporting of potentially reportable deaths and inaccurate completion of death certificates have significant implications for the health system and community. Further education of medical practitioners about reportable deaths and death certificates is required. Doctors should report any death about which they have doubt.

Attitudes of Australian emergency department clinicians toward organ and tissue donation: an analysis of cultural and religious influences.

OBJECTIVES: To determine Australian emergency department clinicians' cultural and religious barriers to organ and tissue donation (OTD). METHOD: A national cross-sectional survey of physicians and nurses working in Australian emergency departments. An online questionnaire of 133 items was delivered via e-mail. RESULTS: Responses were received from 599 of 2969 (20%) physicians and 212 of 1026 (21%) nurses. Respondents were generally representative of the colleges. Participants were from 26 cultures and 9 religious groups. Self-rated competence in OTD tasks was low for some minority groups: South American, Caribbean, and Pacific Islanders reported little competence in identifying, referring, and caring for potential donors, introducing OTD to families, and approaching distressed families. Those of Arabic, Jewish, North African, and Middle Eastern background reported low competence in referring and caring for potential donors and comforting distressed families. They reported low support for OTD after cardiac death, low familiarity with OTD processes after cardiac death, and poor familiarity with the coroner's process. Those of Southern Asian background reported low comfort in undertaking OTD processes, poor familiarity with the coroner's process, and low competence in caring for potential donors. Those of Islamic faith reported low competence in identifying potential donors, low support for OTD after cardiac death, and thought that the emergency department was an inappropriate location to identify potential donors. Those of Buddhist and Hindu faiths reported low competence in identifying potential donors. Respondent numbers for members of minority groups were low, thereby limiting the statistical accuracy of results. CONCLUSIONS: Among clinicians working in Australian emergency departments, religion and culture may be barriers to facilitating OTD in emergency departments because of the perceptions and attitudes held by particular religious and cultural groups. Improving access to education may address these differences.

Resource barriers to the facilitation of organ and tissue donation reported by Australian emergency clinicians.

OBJECTIVE: To explore emergency department clinicians' perceived resource barriers to facilitating organ and tissue donation (OTD). METHODS: A cross-sectional national online survey of Australian emergency department (ED) clinicians. RESULTS: ED clinicians reported a range of resource barriers that hinder the facilitation of OTD, most notably a lack of time to discuss OTD with a patient's family (74.6%). Those reporting more resource barriers had been less involved in OTD-related tasks. For example, those reporting a lack of time to assess a patient's suitability to be a potential donor had less experience with OTD-related tasks in the last calendar year than did those who reported that they often or always have enough time for this (P<0.01). In addition, ED clinicians working in DonateLife network hospitals were more involved in OTD-related tasks (P<0.01) and reported fewer resource shortages in the ED and the hospital overall. CONCLUSIONS: Resource shortages hinder the facilitation of OTD in the ED and are related to decreased involvement in OTD-related tasks. In addition, ED clinicians working in DonateLife hospitals are more involved in OTD-related tasks and report fewer resource shortages overall. Addressing resource shortages and extending the DonateLife network could benefit OTD rates initiated from the ED.

The association between tobacco smoking and depression and anxiety in people with multiple sclerosis: A systematic review.

BACKGROUND: The link between tobacco smoking and Multiple Sclerosis (MS) onset and progression is well-established. While clinical levels of depression and anxiety are highly prevalent in people living with MS (plwMS), and both are recognized as common MS-related symptoms, the relationships between smoking behavior and depression and anxiety are unclear. This systematic review aimed to synthesize evidence on the relationships between current-smoking and former-smoking and depression and anxiety in plwMS. METHODS: Systematic review of all studies investigating associations between tobacco smoking and depression and anxiety in plwMS was conducted. Relevant studies published before 26 April 2022 were identified by searching seven databases; MEDLINE® (Ovid and PubMed), Embase, CINAHL®, Cochrane Library and PsycInfo), and citation and reference list checking. Joanna Briggs Institute Critical Appraisal Checklists for respective study designs assessed the risk of bias. RESULTS: Thirteen publications reporting on 12 studies met study inclusion criteria. Nine of 12 studies examining current-smoking and depression in plwMS identified a positive association. Four prospective studies provided evidence supporting a causal smoking-depression relationship, with 1.3-2.3-fold higher depression prevalence found in current-smokers than non-smokers. Three cross-sectional studies found no smoking-depression association. Four of five included studies found current-smoking was associated with anxiety, with three prospective studies indicating anxiety prevalence was around 20% higher in current-smokers. Former-smoking was associated with increased prevalence of depression, but not anxiety. CONCLUSION: We provide strong evidence for increased depression prevalence in plwMS who are either current-smokers or former-smokers. However, only current-smoking was associated with increased prevalence of anxiety.

Australian emergency doctors' and nurses' acceptance and knowledge regarding brain death: a national survey.

Healthcare staff's acceptance of brain death (BD) being a valid determination of death is essential for optimized organ and tissue donation (OTD) rates. Recently, resources to increase Australian OTD rates have been aimed at emergency departments (ED) as a significant missed donor potential was discovered. A cross-sectional survey was conducted to assess Australian ED clinicians' acceptance and knowledge regarding BD. Most (86%) of the 599 medical and 212 nursing staff accepted BD, but only 60% passed a 5-item-validated BD knowledge tool. BD knowledge was related to the acceptance of BD. Accepting BD influenced attitudes toward OTD, including willingness to donate. BD acceptance and knowledge were related to education/training regarding OTD, years of experience in EDs, experience with OTD-related tasks, and increased perceived competence and comfort with OTD-related tasks. Of concern, more than half of respondents who did not pass the BD test reported feeling competent and comfortable explaining BD to next of kin; of respondents who had recent experience with this, more than a third failed the BD test. Despite being generally positive toward OTD, Australian ED clinicians do not have a sound knowledge of BD. This may be hampering efforts to increase donation rates from the ED.

Personal attitudes and beliefs regarding organ and tissue donation: a cross-sectional survey of Australian emergency department clinicians.

CONTEXT: Resources are currently targeted at increasing organ and tissue donation rates from emergency departments in Australia. Health care professionals' beliefs and personal attitudes regarding organ and tissue donation are known to influence professional attitudes and practice. OBJECTIVE: To assess emergency department clinicians' general beliefs and personal attitudes toward organ and tissue donation, how general beliefs influence personal attitudes, and which demographic characteristics are related. DESIGN: A cross-sectional online survey, based on available literature and the validated and widely used Hospital Attitude Survey (DonorAction). PARTICIPANTS: Data were collected from 811 Australian emergency department clinicians, invited to participate through the College of Emergency Nursing Australasia, and the Australasian College for Emergency Medicine. RESULTS: Most clinicians were very supportive of organ and tissue donation (96.2%), believed that organ and tissue donation can save lives (98.5%), and that organs and tissues will be allocated fairly (82.6%); however, 30.1% did not agree that organ and tissue donation can help the next of kin cope with grief. Holding positive general beliefs increased positive personal attitudes toward organ and tissue donation (P < .001). Most reported willingness to donate their own organs and tissues after death (90%) and give family consent for their children (79.6%) or adult family (86.6%) member to donate. Eighty-six percent had discussed their wishes with next of kin, but only 50.7% had registered on the Australian Organ Donor Register. Older clinicians, male clinicians, and clinicians of certain religious and cultural backgrounds were identified as having less positive general beliefs and personal attitudes. CONCLUSION: Although Australian emergency department clinicians are generally positive toward organ and tissue donation, some groups could potentially benefit from education to change their beliefs and attitudes about organ and tissue donation further.

A qualitative analysis of free text comments of participants from a massive open online mindfulness course.

Introduction: Mindfulness-based interventions are associated with improved health and wellbeing. Online mindfulness interventions offer potential scalability and cost advantages over face-to-face interventions. However, little is known about the experiences of learners, what they identify as being helpful to developing a practice of mindfulness and what outcomes they experience from undertaking an online mindfulness program. Methods: The Mindfulness for Wellbeing and Peak Performance Massive Open Online Course is a 4-week mindfulness program which includes psychoeducation, mindfulness meditation, applications and moderated discussion forums. Of the 3,335 participants who completed the March 2020 course, 527 (16%) responded to the final forum which invited participants to describe the highlights of the course. In order to enhance understanding of participant experiences and perceived outcomes of undertaking the course, a qualitative analysis of these free text comments was conducted using reflexive thematic analysis. Results: Two overarching themes were identified: (1) internal mechanisms of developing mindfulness (subthemes: paying attention to the present moment, learning to let go and find acceptance, cultivating an attitude of gentleness, and learning through a sense of belonging) and (2) the translation of mindfulness into daily living (subthemes: mindfulness being a support to mental wellbeing, learning to deal with uncertainty and adversity, living a more conscious life, a greater connection with self and others and channeling attention into productivity). Discussion: The themes and subthemes provided insights into the mechanisms learners used to develop mindfulness and how they translated mindfulness into their lives in a variety of beneficial ways. This understanding of learners' experiences could inform delivery of future online mindfulness interventions.

The Feasibility of a Web-Based Educational Lifestyle Program for People With Multiple Sclerosis: A Randomized Controlled Trial.

Background: Modifiable lifestyle factors are important to aid people with multiple sclerosis in the self-management of their disease. Current self-management programs are limited by their face-to-face mode of delivery but there is immense potential with the internet to deliver these programs effectively. Objective: The aims of this study are to assess the feasibility of a digitalized educational lifestyle self-management program for people with MS. Methods: In this randomized controlled trial, people with MS were randomly allocated to participate in a 6-week tailored web-based educational lifestyle program or 6-week generic standard-care educational course, and were blinded to their allocation. Participants were recruited through multiple sclerosis (MS) Societies in four countries: Australia, New Zealand, Canada, and the United States. The primary outcome was to assess acceptability of the program defined as percentage completion of all modules at 6-weeks post-course commencement. Secondary outcomes included evaluating participant responses to the follow-up survey across three domains: accessibility, learnability, and desirability. Results: Thirty-five participants from Australia, Canada, New Zealand, and the US completed the baseline survey and were randomized. Four participants were deemed ineligible due to incomplete baseline data; therefore, nine out of 15 and eight out of 16 participants completed 100% of the course in the intervention and standard-care arm courses, respectively. Conclusions: This study found that this web-based educational lifestyle program is a feasible means of delivering educational content to people with MS via the internet according to our a priori targets of >40% of participants in the intervention arm, and >25% in the control arm to completing 100% of the course. It is therefore appropriate to evaluate this intervention further in a large, randomized controlled trial. Trial registration: This study was prospectively registered with the Australian New Zealand Clinical Trials Registry (ID: ACTRN12621000245897).

A multiple sclerosis lifestyle behavior online course: Qualitative analysis of participants' motivations, expectations and experiences.

Background: Modification of lifestyle-related risk factors for multiple sclerosis (MS) has been associated with improved health outcomes when compared with standard medical management alone. Based on an existing lifestyle modification program offered as a residential workshop, the MS Online Course (MSOC) was developed to translate the workshop into an online intervention. We performed a pilot randomized controlled trial (RCT), to assess the feasibility concepts of accessibility, learnability and desirability through quantitative and qualitative analyzes. In the present study, we performed additional qualitative analyzes to explore participants' motivations, expectations, and experiences of the MSOC. This study aims to complement prior feasibility analyzes and inform recruitment strategies and course content redevelopment so that its effectiveness may be assessed by examining behavior change and health outcomes in a future larger RCT. Methods: Participants were recruited via online advertisements and randomized to either: the standard care course, containing material sourced from public facing MS websites; or the intervention course, based on an evidence-based lifestyle modification program for people with MS. Course completers were invited to participate in semi-structured interviews. Within a qualitative paradigm, reflexive thematic analysis of interviews was undertaken. Results: Of 31 eligible participants, 17 completed the MSOC and 14 agreed to be interviewed. Four themes were identified in this analysis: (1) "Wanting to help others" (helping through volunteering, contributing to knowledge base, spreading the word; (2) "Seeking knowledge" (confirmation of existing knowledge; obtaining new knowledge, relevant, credible information); (3) "Doing what I can to help myself" (understanding lifestyle modification, changing my lifestyle, remaining well); and (4) "Changing attitudes" (finding positivity, feeling more confident and in control). Conclusions: Participants were motivated to help others through research, help themselves by improving knowledge and to find ways to better manage their MS. Expectations included obtaining credible, reliable information, to substantiate existing knowledge, and to further understand lifestyle modification. Participants' experiences included confirmation of and obtaining new knowledge, and early implementation of modified lifestyle behaviors. These insights surrounding participants' motivations, expectations and experiences will assist in recruitment strategies, course redevelopment and outcome measures for the future RCT to examine the effectiveness of the MSOC.

Associations between Lifestyle Behaviors and Quality of Life Differ Based on Multiple Sclerosis Phenotype.

Multiple sclerosis (MS), a neuroinflammatory disorder, occurs as non-progressive or progressive phenotypes; both forms present with diverse symptoms that may reduce quality of life (QoL). Adherence to healthy lifestyle behaviors has been associated with higher QoL in people with MS; whether these associations differ based on MS phenotype is unknown. Cross-sectional self-reported observational data from 1108 iConquerMS participants were analysed. Associations between lifestyle behaviors and QoL were assessed by linear regression, and phenotype differences via moderation analyses. Diet, wellness, and physical activity, but not vitamin D or omega-3 supplement use, were associated with QoL. Specifically, certain diet types were negatively associated with QoL in relapsing-remitting MS (RRMS), and positively associated in progressive MS (ProgMS). Participation in wellness activities had mixed associations with QoL in RRMS but was not associated in ProgMS. Physical activity was positively associated with QoL in RRMS and ProgMS. Phenotype differences were observed in diet and wellness with physical QoL, and physical activity with most QoL subdomains. Our findings show lifestyle behaviors are associated with QoL and appear to differ based on MS phenotype. Future studies assessing timing, duration, and adherence of adopting lifestyle behaviors may better inform their role in MS management.

Assessing Lifestyle Behaviours of People Living with Neurological Conditions: A Panoramic View of Community Dwelling Australians from 2007-2018.

Neurological disorders pose a substantial health and economic burden to the individual and society, necessitating strategies for effective prevention and disease management. Lifestyle behaviours play a role in risk and management of some neurological disorders; however, overlap between lifestyle behaviours across disorders has not been well explored. We used log-binomial regression to assess associations of selected lifestyle behaviours in community-dwelling Australians (n = 192,091), some of whom self-reported Alzheimer's disease (AD), motor neurone disease (MND), multiple sclerosis (MS), Parkinson's disease (PD) or stroke. Of six lifestyle behaviours, undertaking physical activity was inversely associated with the presence of all neurological disorders except PD. Smoking was positively associated with MND and stroke, and inversely associated with PD. Participants with AD and stroke shared inverse associations with cognitive engagement, face-to-face social interaction and stress-reducing activities, and MS was positively associated with online social interaction and stress-reduction activities. Of eleven food and beverage consumption categories, no associations were seen in MND, ten categories were inversely associated with people with AD or stroke, and six of these with PD. Vegetable and soft drink consumption were associated with MS. Further detailed assessment of commonalities in lifestyle behaviours across neurological disorders may inform potential strategies for risk reduction across disorders.

Views of the Future of Partners of People with Multiple Sclerosis Who Attended a Lifestyle Modification Workshop: A Qualitative Analysis of Perspectives and Experiences.

People with multiple sclerosis (PwMS) often experience uncertainty and fear about their futures. Partners of PwMS may share their concerns and experience fears about their own futures, limitations on their lives, ability to work, and becoming a carer. For PwMS, modification of lifestyle-related risk factors has been associated with improved health outcomes. For PwMS who attended residential lifestyle modification workshops (RLMW), sustained improved health outcomes have been demonstrated. Whether improved outcomes for PwMS who engage with lifestyle modification translate to improved partner perceptions of the future, is yet to be explored. We explored the perspectives of partners of PwMS who had attended a RLMW and the impact that the person with MS's illness and their engagement with lifestyle modification had on their partners' views of the future. Analysis of 21 semi-structured interviews used a methodology informed by Heidegger's Interpretive Phenomenology. Three themes emerged: 'uncertainty', 'planning for the future' and 'control, empowerment and confidence'. Subthemes included MS and lifestyle modification being a catalyst for positive change; developing a sense of control and empowerment; and hope, optimism and positivity. Lifestyle modification may provide benefits, not only to PwMS, but also to their partners, and should be considered part of mainstream management of MS.