Weiland, TJ and De Livera, AM and Brown, CR and Jelinek, GA and Aitken, Z and Simpson Jr, SL and Neate, SL and Taylor, KL and O'Kearney, E and Bevens, W and Marck, CH, Health outcomes and lifestyle in a sample of people with multiple sclerosis (HOLISM): longitudinal and validation cohorts, Frontiers in Neurology, 9 Article 1074. ISSN 1664-2295 (2018) [Refereed Article]
Copyright 2018 Weiland, De Livera, Brown, Jelinek, Aitken, Simpson, Neate, Taylor, O'Kearney, Bevens and Marck. Licensed under Creative Commons Attribution 4.0 International (CC BY 4.0) https://creativecommons.org/licenses/by/4.0/
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.
|Item Type:||Refereed Article|
|Keywords:||cohort study, multiple sclerosis, lifestyle, disability, risk factor|
|Research Division:||Biomedical and Clinical Sciences|
|Research Field:||Central nervous system|
|Objective Group:||Clinical health|
|Objective Field:||Clinical health not elsewhere classified|
|UTAS Author:||Simpson Jr, SL (Dr Steve Simpson JR)|
|Web of Science® Times Cited:||16|
|Deposited By:||Menzies Institute for Medical Research|
|Downloads:||69 View Download Statistics|
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