Multiple sclerosis (MS) is a chronic neurological disorder, often affecting young people. Comorbid disorders such as depression, anxiety and hypertension are common and can affect disease course, treatment, and quality of life (QOL) of people with MS (PwMS). The associations between comorbidities, body mass index (BMI) and health outcomes are not well studied in MS, although research shows most PwMS are overweight. Most data on the prevalence of comorbidities and obesity in PwMS comes from North American populations. This study describes the prevalence of comorbidities, overweight and obesity and associations with modifiable factors in an international sample of PwMS recruited online through social media, MS societies and websites. The online survey consisted of validated and researcher-devised instruments to assess self-reported health outcomes and lifestyle behaviors. Of the 2399 respondents, 22.5% were overweight, 19.4% were obese and 67.2% reported at least one comorbidity, with back pain (36.2%), depression (31.7%), anxiety (29.1%) and arthritis (13.7%) most prevalent and most limiting in daily activities. Obesity and most comorbid disorders were significantly more prevalent in North America. Obese participants were more likely to have comorbidities, especially diabetes (OR 4.8) and high blood pressure (OR 4.5) but also depression (OR 2.2). Being overweight, obese, or a former, or current smoker was associated with an increase in the number of comorbidities; while healthy diet, physical activity (borderline significant) and moderate alcohol consumption were associated with decreased number of comorbidities. Increasing number of comorbidities was related to worse QOL, increased odds of disability and prior relapse. Obese PwMS had higher odds of disability and lower QOL. The associations between BMI, comorbidities and health outcomes are likely to be bi-directional and associated with lifestyle behaviors. Preventing and treating comorbid disorders and obesity in PwMS is warranted, and advice regarding healthy and risky lifestyle may assist in improving health outcomes.

BackgroundSexual 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.MethodsWe 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.Results2062 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.ConclusionThis 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.

BackgroundPeople with multiple sclerosis (MS) often experience pain, which can interfere with mobility, employment, and quality of life (QOL).MethodsThis cross-sectional study explored associations between pain, demographic, disease, and modifiable lifestyle factors in an international sample of people with MS recruited online.ResultsSubstantial pain, of moderate/severe intensity and interfering at least moderately with work/household or enjoyment of life in the past 4 weeks, was reported by 682/2,362 (28.9%). Substantial pain was associated with fatigue (odds ratio (OR): 6.7, 95% confidence interval (CI): 4.9,9.3), depression (OR:4.0, 95% CI:3.2,5.1), anxiety (OR:2.4, 95% CI:1.9,2.9), and lower mental health QOL (Mean Difference: −14.7, 95% CI:−16.6,−12.8). Regression analyses showed that smoking (OR: 2.0, 95% CI:1.35,2.87) and obesity (OR:2.1, 95% CI: 1.5,2.8), moderate alcohol use (OR: 0.7, 95% CI:0.5,0.9), moderate (OR 0.7, 95% CI: 0.55,0.98) or high (OR 0.6, 95% CI: 0.4,0.8) physical activity level, and healthy diet (OR 0.8, 95% CI: 0.75,0.95, per 10 points) were associated with substantial pain.ConclusionOur results show clear associations with modifiable lifestyle factors and substantial pain in MS. These factors are already considered in the prevention and management of pain in other populations but have not previously been considered in MS. Conversely, pain and associated common MS comorbidities, such as depression, anxiety, and fatigue, may hamper efforts to start or maintain healthy behaviors. Strategies to overcome these barriers need to be considered. Further research should clarify the direction of these associations.

We aimed to describe the experiences of families of potential organ and tissue donors eligible for donation after circulatory death or brain death. Forty-nine family members of potential donors from four Melbourne hospitals were interviewed to assess their experiences of communication, processes and the outcomes of donation. Interviews were recorded, transcribed verbatim and analysed thematically. Families expressed a range of perspectives on the themes of communication, hospital processes and care, the processes of consent and donation and reflected on decisions and outcomes. They expressed satisfaction overall with communication when receiving bad news, discussing death and donation. Honest and frank communication and being kept up-to-date and prepared for potential outcomes were important aspects for families, especially those of post circulatory death donors. Participants reported high levels of trust in healthcare professionals and satisfaction with the level of care received. Many donor families indicated the process was lengthy and stressful, but not significantly enough to adversely affect their satisfaction with the outcome. Both the decision itself and knowing others' lives had been saved provided them with consolation. No consenting families, and only some non-consenting families, regretted their decisions. Many expressed they would benefit from a follow-up opportunity to ask questions and clarify possible misunderstandings. Overall, while experiences varied, Australian families valued frank communication, trusted health professionals, were satisfied with the care their family member received and with donation processes, despite some apparent difficulties. Family satisfaction, infrequently assessed, is an important outcome and these findings may assist education for Australian organ donation professionals.

BackgroundModifiable risk factors such as smoking and sedentary lifestyle adversely affect multiple sclerosis (MS) progression. Few multimodal behavioural interventions have been conducted for people with MS, and follow-up beyond 1 year is rare for lifestyle interventions. This study assessed adoption and adherence to healthy lifestyle behaviours and health outcomes 3 years after a lifestyle modification intervention, using generalized estimating equation models to account for within-participant correlation over time.Methods95 people with MS completed baseline surveys before participating in 5-day MS lifestyle risk-factor modification workshops. 76 and 78 participants completed the 1-year and 3-year follow-up surveys respectively. Mean age at 3-year follow-up was 47 years, 72% were female, most (62.8%) had MS for 5 years or less, and 73% had relapsing remitting MS (RRMS).ResultsCompared to baseline, participants reported clinically meaningful increases in physical (mean difference (MD): 8.0, 95% Confidence Interval (CI): 5.2–10.8) and mental health (MD: 9.2, CI: 5.8–12.6) quality of life (QOL) at 1-year, and physical (MD: 8.7, CI: 5.3–12.2) and mental health (MD: 8.0, CI: 4.2–11.8) QOL at 3-year follow-up. There was a small decrease in disability from baseline to 1-year follow-up (MD: 0.9, CI: 0.9,1.0) and to 3-year follow-up (MD: 1.0, CI: 0.9,1.0), which was not clinically meaningful. Of those with RRMS, compared to baseline, fewer had a relapse during the year before 1-year follow-up (OR: 0.1, CI 0.0–0.2) and 3-year follow-up (OR: 0.15, CI 0.06–0.33). Participants’ healthy diet score, the proportion meditating ≥1 hours a week, supplementing with ≥ 5000IU vitamin D daily, and supplementing with omega-3 flaxseed oil increased at 1-year follow-up and was sustained, although slightly lower at 3-year follow-up. However, there was no evidence for a change in physical activity and not enough smokers to make meaningful comparisons. Medication use increased at 1-year follow-up and at 3-year follow-up.ConclusionThe results provide evidence that lifestyle risk factor modification is feasible and sustainable over time, in a small self-selected and motivated sample of people with MS. Furthermore, participation in a lifestyle intervention is not associated with a decrease in MS medication use.

Numbers of deceased organ donors in Australia have increased, but rates of consent to donation remain at around 60%. Increasing family consent is a key target for the Australian Organ and Tissue Authority. Reasons for donation decisions have been reported in the international literature, but little is known of reasons for Australian families' decisions. Potential organ donors in four Melbourne hospitals were identified and 49 participants from 40 families (23 consenting and 17 nonconsenting) were interviewed to understand reasons for consent decisions. Themes for consent to organ donation included that: donation was consistent with the deceased's explicit wishes or known values, the desire to help others or self-including themes of altruism, pragmatism, preventing others from being in the same position, consolation received from donation and aspects of the donation conversation and care that led families to believe donation was right for them. Themes for nonconsent included: lack of knowledge of wishes, social, cultural and religious beliefs; factors related to the donation process and family exhaustion; and conversation factors where negative events influenced decisions. While reasons for consent were similar to those described in international literature, reasons for non-consent differed in that there was little emphasis on lack of trust of the medical profession, concerns regarding level of care provided to the potential donor, preserving the deceased's body, fears of body invasion or organ allocation fairness.

ObjectiveEmerging evidence links modifiable lifestyle risk factors to disease progression in multiple sclerosis (MS). We sought further evidence around this hypothesis through detailed analysis of the association with disability of lifestyle behaviours of a large international sample of people with MS.Materials and MethodsA total of 2469 people with MS from 57 countries provided self-reported data via cross-sectional online survey on lifestyle (mostly with validated tools) and the primary outcome measure, disability (Patient Determined Disease Steps), categorised from 8 steps into 3 categories, mild, moderate and major disability. Multinomial logistic regression modelling derived relative risk ratios (RRRs) for disability categories.ResultsRRRs of having moderate vs mild disability were: diet (per 30 points on 100 point scale) 0.72 (95%CI 0.52–0.98), ever smoking 1.32 (1.06–1.65), exercise (moderate/high vs low) 0.35 (0.28–0.44), latitude (per degree from the equator) 1.02 (1.01–1.04), and number of comorbidities (2 vs none) 1.43 (1.04–1.95), (3 vs none) 1.56 (1.13–2.16). RRRs of having major vs mild disability were: exercise (moderate/high vs low) 0.07 (0.04–0.11), alcohol consumption (moderate vs low) 0.45 (0.30–0.68), plant-based omega 3 supplementation 0.39 (0.18–0.86), and disease-modifying medication use 0.45 (0.29–0.70).ConclusionsHealthier lifestyle has strong associations with disability in our large international sample of people with MS, supporting further investigation into the role of lifestyle risk factors in MS disease progression.

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.