Health Outcomes and Lifestyle in a Sample of People With Multiple Sclerosis (HOLISM): Longitudinal and Validation Cohorts

Abstract

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.

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

“…2). Respondents, compared to those lost to follow-up, had higher mental and physical health quality of life, lower levels of disability, shorter disease duration, and were less likely retired due to medical reasons or disability [20]. Participants were mostly female, with a university degree and on average around 45 years of age.…”

“…English-speaking PwMS, recruited through online MS forums, social media, and MS society newsletters completed the online Health Outcomes and Lifestyle In a Sample of people with MS (HOLISM) study survey in 2012 [20]. After reading the participant information and indicating consent for participation in the study, participants entered the survey which took approximately 40 min to complete.…”

Associations of demographic and clinical factors with depression over 2.5-years in an international prospective cohort of people living with MS

“…As described elsewhere (Hadgkiss et al, 2013;Weiland et al, 2018), the cohort was majority female at both timepoints, of mean age in the mid-40s and the mean BMI was in the overweight range. Roughly three-quarters of participants reported relapsing-remitting MS (RRMS), median duration from diagnosis of 6 years, and a low level of disability, though clinically significant fatigue was present in approximately two-thirds of participants at both timepoints.…”

“…Participants were enrolled in the HOLISM study for which methodology has been described previously (Hadgkiss et al, 2013;Weiland et al, 2018). Participants were recruited via online platforms, and SurveyMonkey® was used to provide respondents with a participant information sheet and survey.…”

“…A range of demographic, lifestyle, and clinical parameters were measured as described previously (Hadgkiss et al, 2013;Weiland et al, 2018). BMI was estimated from participant-reported height (metres) and weight (kilograms) using the function, weight/height 2 .…”