87 results on '"Neate SL"'
Search Results
2. Barriers to continuing medical education in Australian prevocational doctors
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Dent, AW, Jolly, BC, Crotty, B, Weiland, TJ, Farish, S, and Neate, SL
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- 2008
3. Experiences of and attitudes to lifestyle modification for the management of multiple sclerosis: A qualitative analysis of free-text survey data
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Neate, SL, Donald, A, Jelinek, GA, Nag, N, Neate, SL, Donald, A, Jelinek, GA, and Nag, N
- Abstract
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.
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- 2022
4. The feasibility of an online educational lifestyle program for people with multiple sclerosis: A qualitative analysis of participant semi-structured interviews
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Bevens, W, Reece, J, Jelinek, PL, Weiland, TJ, Nag, N, Simpson-Yap, S, Gray, K, Jelinek, GA, Neate, SL, Bevens, W, Reece, J, Jelinek, PL, Weiland, TJ, Nag, N, Simpson-Yap, S, Gray, K, Jelinek, GA, and Neate, SL
- Abstract
OBJECTIVE: To explore the feasibility of a randomised controlled trial of a multiple sclerosis online course (MSOC) via qualitative analysis of participant semi-structured interviews. METHODS: The MSOC was developed in two arms: intervention arm which contained evidence-based lifestyle modification recommendations, and standard-care arm which delivered information from MS websites reflecting standard advice. Participants were recruited via online advertisements, completed a baseline questionnaire, and randomised. Seven modules were delivered over six weeks. Course completers were invited to participate in semi-structured interviews. Within a qualitative paradigm, interviews were analysed using reflexive thematic analysis. RESULTS: Fourteen of the 17 course completers were interviewed: 86% (12/14) female; mean age 50 years; residing in Australia, New Zealand, and the USA, predominantly had relapsing-remitting MS, mean time from diagnosis 9.5 years, and patient-determined disease steps disability assessment distributed evenly across all three categories. Four themes were identified: 1) "Hearing our stories" (hope for the future, feeling represented, exploring the journey of others with MS, learning from diversity, and wanting to connect with others); 2) "Taking the plunge" (not wanting to be first, feelings of nervousness or reluctance and feeling confronted); 3) "The accessibility and safety of being online" (ease of access, going at your own pace, making it work and not letting others down); and 4) "unpacking the course" (ease of navigation, visuals, understandability, and length and timing). CONCLUSION: Participants felt represented, found the course accessible and content was easy to understand. These experiences provide important insights and considerations for this digital health intervention.
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- 2022
5. A qualitative analysis of free text comments of participants from a massive open online mindfulness course.
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Neate, SL, Reece, JC, Hassed, C, Chambers, R, Connaughton, S, Nag, N, Neate, SL, Reece, JC, Hassed, C, Chambers, R, Connaughton, S, and Nag, N
- Abstract
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.
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- 2022
6. The Feasibility of a Web-Based Educational Lifestyle Program for People With Multiple Sclerosis: A Randomized Controlled Trial
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Bevens, W, Weiland, TJ, Gray, K, Neate, SL, Nag, N, Simpson-Yap, S, Reece, J, Yu, M, Jelinek, GA, Bevens, W, Weiland, TJ, Gray, K, Neate, SL, Nag, N, Simpson-Yap, S, Reece, J, Yu, M, and Jelinek, GA
- Abstract
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
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- 2022
7. Characteristics of mHealth app use in an international sample of people with multiple sclerosis
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Bevens, W, Gray, K, Neate, SL, Nag, N, Weiland, TJ, Jelinek, GA, and Simpson-Yap, S
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- 2021
- Full Text
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8. The feasibility of an online educational lifestyle program for people with multiple sclerosis: A qualitative analysis of participant semi-structured interviews
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Bevens, William, primary, Reece, J, additional, Jelinek, PL, additional, Weiland, TJ, additional, Nag, N, additional, Simpson-Yap, S, additional, Gray, K, additional, Jelinek, GA, additional, and Neate, SL, additional
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- 2022
- Full Text
- View/download PDF
9. Associations between Lifestyle Behaviors and Quality of Life Differ Based on Multiple Sclerosis Phenotype
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Nag, N, Yu, M, Jelinek, GA, Simpson-Yap, S, Neate, SL, Schmidt, HK, Nag, N, Yu, M, Jelinek, GA, Simpson-Yap, S, Neate, SL, and Schmidt, HK
- Abstract
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.
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- 2021
10. 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
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Weiland, TJ, Nag, N, De Livera, A, Jelinek, GA, Neate, SL, Bevens, W, Simpson-Yap, S, Weiland, TJ, Nag, N, De Livera, A, Jelinek, GA, Neate, SL, Bevens, W, and Simpson-Yap, S
- Abstract
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.
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- 2021
11. Views of the Future of Partners of People with Multiple Sclerosis Who Attended a Lifestyle Modification Workshop: A Qualitative Analysis of Perspectives and Experiences
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Neate, SL, Taylor, KL, Nag, N, Jelinek, GA, Simpson-Yap, S, Bevens, W, Weiland, TJ, Neate, SL, Taylor, KL, Nag, N, Jelinek, GA, Simpson-Yap, S, Bevens, W, and Weiland, TJ
- Abstract
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.
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- 2021
12. Assessing Lifestyle Behaviours of People Living with Neurological Conditions: A Panoramic View of Community Dwelling Australians from 2007-2018
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Nag, N, Lin, X, Yu, M, Simpson-Yap, S, Jelinek, GA, Neate, SL, Levin, M, Nag, N, Lin, X, Yu, M, Simpson-Yap, S, Jelinek, GA, Neate, SL, and Levin, M
- Abstract
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.
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- 2021
13. SF-6D health state utilities for lifestyle, socio-demographic and clinical characteristics of a large international cohort of people with multiple sclerosis
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Campbell JA, Jelinek GA, Weiland TJ, Nag N, Neate SL, Palmer AJ, Mulhern B, De Livera A, and Simpson S
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Adult ,Male ,Multiple Sclerosis ,Adolescent ,Middle Aged ,Cohort Studies ,Young Adult ,Socioeconomic Factors ,1117 Public Health and Health Services, 1701 Psychology ,Health Policy & Services ,Quality of Life ,Humans ,Female ,Life Style ,Aged - Abstract
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.
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- 2020
14. Therapeutic utilization of meditation resources by people with multiple sclerosis: insights from an online patient discussion forum
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O'Donnell, JM, Jelinek, GA, Gray, KM, De Livera, A, Brown, CR, Neate, SL, O'Kearney, EL, Taylor, KL, Bevens, W, Weiland, TJ, O'Donnell, JM, Jelinek, GA, Gray, KM, De Livera, A, Brown, CR, Neate, SL, O'Kearney, EL, Taylor, KL, Bevens, W, and Weiland, TJ
- Abstract
We aimed to describe website traffic and qualitatively analyze an e-health community discussion forum. Participants in this study were people affected by multiple sclerosis visiting the Overcoming Multiple Sclerosis (OMS) website. This mixed methods study combined descriptive analysis of website traffic over 7 years and 1 month, and qualitative analysis of 1 week of posts in the meditation topic, coded into theme groups using qualitative thematic analysis. There were 166 meditation topics posted with 21,530 initial views of primary post and 785 sub-post responses. Meditation posts and sub-posts received 368,713 replies. Number of views increased from 4,684 in 2011 to over 80,000 in 2017, a considerably greater rate of increase than overall traffic. Qualitative analysis of posts on the meditation forum identified themes of barriers and enablers to utilization of meditation resources. Enablement themes dominated, observed across six of the seven theme groups with various forms of positive social and emotional support to learn and practice meditation. One theme, negative emotion, was identified as a barrier. The OMS peer-to-peer patient online discussion forum serves important functions in encouraging, educating and enabling its growing online community. Our analysis may help improve and innovate online support for lifestyle management in many chronic diseases.
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- 2020
15. Taking active steps: Changes made by partners of people with multiple sclerosis who undertake lifestyle modification
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Soundy, A, Neate, SL, Taylor, KL, Jelinek, GA, De Livera, AM, Brown, CR, Weiland, TJ, Soundy, A, Neate, SL, Taylor, KL, Jelinek, GA, De Livera, AM, Brown, CR, and Weiland, TJ
- Abstract
BACKGROUND: Multiple sclerosis (MS), a demyelinating condition of the central nervous system with an unpredictable course, has a major impact on the lives of people with MS. Partners of people with MS may be significantly affected by the diagnosis, management and uncertainty around disease progression and may provide substantial support and care. Modification of lifestyle risk factors in conjunction with standard medical management has been associated with improved physical and mental quality of life. Adopting major lifestyle modification may have a multi-faceted impact on the person with MS and their partner. Experiences of partners of people with MS have been previously explored, but the experiences of partners of people with MS who adopt this strategy have not. As part of a larger study that aimed to explore partners' lived experiences of and attitudes towards MS and lifestyle modification, this study reports the active steps and significant changes partners undertook to assist the person with MS and, at times, to also modify their own lives. DESIGN: Within an interpretive framework, using Heidegger's phenomenological philosophy, a qualitative study of semi-structured interviews was conducted. PARTICIPANTS: Aged greater than 18 years and in a spousal relationship with a person with MS who had undertaken an intensive residential lifestyle educational intervention promoting healthy lifestyle. RESULTS: Themes identified were: adjusting to lifestyle modification, understanding motivations and practical aspects of adjustment; seeking knowledge and support, exploring the ways partners sought positive support for themselves and the person with MS and abandoned negative influences; and embracing well-being, commitment and change, describing the major changes that partners made to their lives professionally and personally. CONCLUSIONS: The experiences of these partners provide clinicians with insight into potential motivations and outcomes of lifestyle modification and su
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- 2019
16. Self-reported cognitive function in a large international cohort of people with multiple sclerosis: associations with lifestyle and other factors
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Jelinek, PL, Simpson, S, Brown, CR, Jelinek, GA, Marck, CH, De Livera, AM, O'Kearney, E, Taylor, KL, Neate, SL, Weiland, TJ, Jelinek, PL, Simpson, S, Brown, CR, Jelinek, GA, Marck, CH, De Livera, AM, O'Kearney, E, Taylor, KL, Neate, SL, and Weiland, TJ
- Abstract
BACKGROUND AND PURPOSE: We aimed to estimate the prevalence of perceived cognitive impairment (PCI) and explore its associations with lifestyle and disease characteristics in a large international cohort of people with multiple sclerosis (MS). METHODS: This study was a cross-sectional analysis. Participants rated their cognitive function over the preceding 4 weeks using four questions in a subscale within the Multiple Sclerosis Quality of Life questionnaire (MSQOL-54). These questions assessed perceived concentration, attention and memory by the patient and family/friends. Four definitions of PCI were derived, ranging from lowest to highest specificity. Associations with PCI were assessed by log-binomial regression. RESULTS: The prevalence of PCI in our sample ranged from 41.0% (95% confidence interval, 39.0-43.0) using the least-specific definition to 11.6% (95% confidence interval, 10.3-12.9) using the most specific definition. A number of factors were associated with PCI, increasing in magnitude as the definition specificity increased, including positive associations for smoking and body mass index, whereas physical activity, dietary quality and use of vitamin D/omega-3 supplements were inversely associated with PCI. CONCLUSIONS: Our study reports associations between healthy lifestyle behaviours and PCI in people with MS. Although reverse causality is a potential explanation for our findings, previous studies have shown comparable associations with healthy lifestyle and MS onset and progression. Subject to external validation, these results suggest benefits realized from a healthy lifestyle in people with MS.
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- 2019
17. On the path together: Experiences of partners of people with multiple sclerosis of the impact of lifestyle modification on their relationship
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Neate, SL, Taylor, KL, Jelinek, GA, De Livera, AM, Simpson, S, Bevens, W, Weiland, TJ, Neate, SL, Taylor, KL, Jelinek, GA, De Livera, AM, Simpson, S, Bevens, W, and Weiland, TJ
- Abstract
Multiple sclerosis (MS) has a major impact on the relationship of couples living with the illness. Although some positives of dealing with MS as a couple have been identified, MS has been associated with higher rates of relationship breakdown and worse Quality of Life (QOL) for both people in the relationship, especially if the person with MS experiences a decline in mental or physical health or develops disability. Modification of lifestyle-related risk factors has been associated with improved outcomes for people with MS, including physical and mental health-related QOL, and these improved outcomes may lead to improved experiences for their partners. We aimed to explore the perspectives and experiences of the partners of people with MS, when the people with MS had undertaken an intensive residential workshop regarding healthy lifestyle, to understand the impact of MS and lifestyle modification on these partners' experiences of their relationship. Within the framework of Heidegger's interpretive phenomenology, semi-structured interviews were thematically analysed. Participants were in a spousal relationship with people with MS who had attended an intensive residential workshop regarding modification of lifestyle-related risk factors between 2002 and 2016. Participants lived in Australia, New Zealand, the United Kingdom and Europe. Three major themes were identified relating to the couple's relationships: providing support, remaining connected and togetherness. Aspects of these themes, not commonly previously reported, included the personal and relationship benefits experienced from providing support with lifestyle modification, improved communication, and the resultant greater sense of closeness. These experiences of partners of people with MS improve our understanding of both the complexities of living with MS and adopting lifestyle modification, and suggest some potential benefits to relationships.
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- 2019
18. Health Outcomes and Lifestyle in a Sample of People With Multiple Sclerosis (HOLISM): Longitudinal and Validation Cohorts
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Weiland, TJ, De Livera, AM, Brown, CR, Jelinek, GA, Aitken, Z, Simpson Jr, SL, Neate, SL, Taylor, KL, O'Kearney, E, Bevens, W, Marck, CH, Weiland, TJ, De Livera, AM, Brown, CR, Jelinek, GA, Aitken, Z, Simpson Jr, SL, Neate, SL, Taylor, KL, O'Kearney, E, Bevens, W, and Marck, CH
- 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 f
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- 2018
19. Psychological Shift in Partners of People with Multiple Sclerosis Who Undertake Lifestyle Modification: An Interpretive Phenomenological Study
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Neate, SL, Taylor, KL, Jelinek, GA, De Livera, AM, Brown, CR, Weiland, TJ, Neate, SL, Taylor, KL, Jelinek, GA, De Livera, AM, Brown, CR, and Weiland, TJ
- Abstract
UNLABELLED: Introduction: Being in an intimate relationship with a person with multiple sclerosis (MS) may have a substantial impact on the partner's quality of life. Existing research has largely focused on negative impacts of MS for both people with MS (PwMS) and their partners and has sampled the population of partners of PwMS who have primarily adopted standard medical management only. Modifiable lifestyle factors have become increasingly recognized in the management of MS symptoms and disease progression. For partners of PwMS who have undertaken lifestyle modification as an additional strategy to minimize disease progression, the impacts, both positive and negative remain unexplored. This research is unique as it focuses on partners of PwMS who have attempted to adopt major lifestyle interventions outside of the prevailing paradigm of MS management. Aim: To explore and interpret the lived experiences of partners of PwMS who have adopted lifestyle modification, to understand partners' attitudes to and experiences of the effect of MS and lifestyle modification on their life, relationship and view of the future. Method: Design: a qualitative, interpretive, phenomenological study using semi-structured interviews. PARTICIPANTS: English-speaking; aged 18 years or more; in a spousal relationship for 12 months or more with a person with MS who had attended a residential lifestyle educational intervention and undertaken lifestyle modification. ANALYSIS: Interviews were recorded, transcribed verbatim and thematically analyzed using NVivo™ software. Results: Twenty-one partners were interviewed. This paper reports one of the study's themes, the psychological shift experienced by partners of PwMS. Sub-themes included adaptation; loss and grief; difficult emotions; reframing, re-evaluating and re-prioritizing; hope and optimism; empowerment and taking control; and self-awareness, greater understanding and personal growth. Conclusion: Partners of PwMS who have undertaken lif
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- 2018
20. Health outcomes and adherence to a healthy lifestyle after a multimodal intervention in people with multiple sclerosis: Three year follow-up
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Aktas, O, Marck, CH, De Livera, AM, Brown, CR, Neate, SL, Taylor, KL, Weiland, TJ, Hadgkiss, EJ, Jelinek, GA, Aktas, O, Marck, CH, De Livera, AM, Brown, CR, Neate, SL, Taylor, KL, Weiland, TJ, Hadgkiss, EJ, and Jelinek, GA
- Abstract
BACKGROUND: Modifiable 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. METHODS: 95 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). RESULTS: Compared 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-ye
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- 2018
21. Longitudinal Associations of Modifiable Lifestyle Factors With Positive Depression-Screen Over 2.5-Years in an International Cohort of People Living With Multiple Sclerosis
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Taylor, KL, Simpson, S, Jelinek, GA, Neate, SL, De Livera, AM, Brown, CR, O'Kearney, E, Marck, CH, Weiland, TJ, Taylor, KL, Simpson, S, Jelinek, GA, Neate, SL, De Livera, AM, Brown, CR, O'Kearney, E, Marck, CH, and Weiland, TJ
- Abstract
Background: Depression is common and has a significant impact on quality of life for many people with multiple sclerosis (MS). A preventive management approach via modification of lifestyle risk factors holds potential benefits. We examined the relationship between modifiable lifestyle factors and depression risk and the change in depression over 2.5 years. Methods: Sample recruited using online platforms. 2,224 (88.9%) at baseline and 1,309 (93.4%) at 2.5 years follow up completed the necessary survey data. Depression risk was measured by the Patient Health Questionnaire-2 (PHQ-2) at baseline and Patient Health Questionniare-9 (PHQ-9) at 2.5-years follow-up. Multivariable regression models assessed the relationships between lifestyle factors and depression risk, adjusted for sex, age, fatigue, disability, antidepressant medication use, and baseline depression score, as appropriate. Results: The prevalence of depression risk at 2.5-years follow-up in this cohort was 14.5% using the PHQ-2 and 21.7% using the PHQ-9. Moderate alcohol intake, being a non-smoker, diet quality, no meat or dairy intake, vitamin D supplementation, omega 3 supplement use, regular exercise, and meditation at baseline were associated with lower frequencies of positive depression-screen 2.5 years later. Moderate alcohol intake was associated with greater likelihood of becoming depression-free and a lower likelihood of becoming depressed at 2.5-years follow-up. Meditating at least once a week was associated with a decreased frequency of losing depression risk, against our expectation. After adjusting for potential confounders, smoking, diet, physical activity, and vitamin D and omega-3 supplementation were not associated with a change in risk for depression. Conclusion: In a large prospective cohort study of people with MS and depression, in line with the emerging treatment paradigm of early intervention, these results suggest a role for some lifestyle factors in depression risk. Further studies
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- 2018
22. Longitudinal Associations of the Healthy Lifestyle Index Score With Quality of Life in People With Multiple Sclerosis: A Prospective Cohort Study
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Leong, T, Weiland, TJ, Jelinek, GA, Simpson, S, Brown, CR, Neate, SL, Taylor, KL, O'Kearney, E, Milanzi, E, De Livera, AM, Leong, T, Weiland, TJ, Jelinek, GA, Simpson, S, Brown, CR, Neate, SL, Taylor, KL, O'Kearney, E, Milanzi, E, and De Livera, AM
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Objective: To explore the association between combined lifestyle risk factors with quality of life in people with multiple sclerosis (MS) over 2.5 years. Methods: People with MS were recruited to participate in a comprehensive online survey regarding their demographic and clinical characteristics, health-related quality of life (HRQOL), and lifestyle behaviors including physical activity, alcohol consumption, cigarette smoking, body mass index, and dietary habits measured at baseline and 2.5-year follow-up. A combined healthy lifestyle index score (HLIS) was constructed by assigning scores of 0-4 to each of the lifestyle risk factors, for which higher values indicate healthier lifestyle behavior. Multivariable linear regression modeling was used to assess whether the HLIS at baseline was associated with the physical and mental HRQOL over the study period in this sample of people with MS. Results: Of 2,466 participants with confirmed MS, 1,401 (57%) completed the follow-up. Multivariable linear regression analyses demonstrated that every 5-point increase (of a possible total of 20) in the baseline HLIS was associated with 1.7 (95% CI: 0.2-3.2) and 2.5 (95% CI: 1.0-4.0) higher scores in the change in physical and mental HRQOL components from baseline to follow-up respectively. Conclusion: Findings suggest the importance of healthy lifestyle behavior in quality of life in MS. A healthy lifestyle program focusing on these behaviors has the potential to positively influence health-related quality of life for people with MS.
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- 2018
23. The Efficacy of Psychological Interventions for Managing Fatigue in People With Multiple Sclerosis: A Systematic Review and Meta-Analysis
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Phyo, AZZ, Demaneuf, T, De Livera, AM, Jelinek, GA, Brown, CR, Marck, CH, Neate, SL, Taylor, KL, Mills, T, O'Kearney, E, Karahalios, A, Weiland, TJ, Phyo, AZZ, Demaneuf, T, De Livera, AM, Jelinek, GA, Brown, CR, Marck, CH, Neate, SL, Taylor, KL, Mills, T, O'Kearney, E, Karahalios, A, and Weiland, TJ
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BACKGROUND: Multiple sclerosis (MS) is a complex, demyelinating disease of the central nervous system. Fatigue is commonly reported by people with MS (PwMS). MS-related fatigue severely affects daily activities, employment, socioeconomic status, and quality of life. OBJECTIVE: We conducted this systematic review and meta-analysis to determine whether psychological interventions are effective in managing fatigue in PwMS. DATA SOURCES: We performed systematic searches of Medline, EMBASE, PsycINFO, and CINAHL to identify relevant articles published from database inception to April 5, 2017. Reference lists from relevant reviews were also searched. STUDY SELECTION AND DESIGN: Two independent reviewers screened the papers, extracted data, and appraised the included studies. A clinical psychologist verified whether interventions were psychological approaches. A narrative synthesis was conducted for all included studies. For relevant randomized controlled trials that reported sufficient information to determine standardized mean differences (SMDs) and 95% confidence intervals (CIs), meta-analyses were conducted using a random-effects model. RESULTS: Of the 353 identified articles, 20 studies with 1,249 PwMS were included in this systematic review. Narrative synthesis revealed that psychological interventions reduced fatigue in PwMS. Meta-analyses revealed that cognitive behavioral therapy decreased levels of fatigue compared with non-active controls (SMD = -0.32; 95% CI: -0.63 to -0.01) and compared with active controls (relaxation or psychotherapy) (SMD = -0.71; 95% CI: -1.05 to -0.37). Meta-analyses further showed that both relaxation (SMD = -0.90; 95% CI: -1.30 to -0.51), and mindfulness interventions (SMD = -0.62; 95% CI: -1.12 to -0.12), compared with non-active control, decreased fatigue levels. The estimates of heterogeneity for the four meta-analyses varied between none and moderate. CONCLUSION: This study found that the use of psychological interventions for MS-rel
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- 2018
24. International Differences in Multiple Sclerosis Health Outcomes and Associated Factors in a Cross-sectional Survey
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Reilly, GD, Mahkawnghta, AS, Jelinek, PL, De Livera, AM, Weiland, TJ, Brown, CR, Taylor, KL, Neate, SL, Jelinek, GA, Marck, CH, Reilly, GD, Mahkawnghta, AS, Jelinek, PL, De Livera, AM, Weiland, TJ, Brown, CR, Taylor, KL, Neate, SL, Jelinek, GA, and Marck, CH
- Abstract
Multiple sclerosis (MS) is a major cause of disability and poor quality of life (QOL). Previous studies have shown differences in MS health outcomes between countries. This study aimed to examine the associations between international regions and health outcomes in people with MS. Self-reported data were taken from the Health Outcomes and Lifestyle In a Sample of people with Multiple Sclerosis online survey collected in 2012. The 2,401 participants from 37 countries were categorized into three regions: Australasia, Europe, and North America. Differences were observed between regions in disability, physical and mental health QOL, fatigue, and depression, but most of these disappeared after adjusting for sociodemographic, disease, and lifestyle factors in multivariable regression models. However, adjusted odds for disability were higher in Europe [odds ratio (OR): 2.17, 95% confidence interval (CI): 1.28 to 3.67] and North America (OR: 1.79, 95% CI: 1.28 to 2.51) compared to Australasia. There may be other unmeasured factors that vary between regions, including differences in access and quality of healthcare services, determining disability in MS. When assessing differences in MS health outcomes, lifestyle factors and medication use should be taken into consideration.
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- 2017
25. Pain in People with Multiple sclerosis: associations with Modifiable lifestyle Factors, Fatigue, Depression, anxiety, and Mental health Quality of life
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Marck, CH, De Livera, AM, Weiland, TJ, Jelinek, PL, Neate, SL, Brown, CR, Taylor, KL, Khan, F, Jelinek, GA, Marck, CH, De Livera, AM, Weiland, TJ, Jelinek, PL, Neate, SL, Brown, CR, Taylor, KL, Khan, F, and Jelinek, GA
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BACKGROUND: People with multiple sclerosis (MS) often experience pain, which can interfere with mobility, employment, and quality of life (QOL). METHODS: This cross-sectional study explored associations between pain, demographic, disease, and modifiable lifestyle factors in an international sample of people with MS recruited online. RESULTS: Substantial 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. CONCLUSION: Our 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.
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- 2017
26. Sexual function in multiple sclerosis and associations with demographic, disease and lifestyle characteristics: an international cross-sectional study
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Marck, CH, Jelinek, PL, Weiland, TJ, Hocking, JS, De Livera, AM, Taylor, KL, Neate, SL, Pereira, NG, Jelinek, GA, Marck, CH, Jelinek, PL, Weiland, TJ, Hocking, JS, De Livera, AM, Taylor, KL, Neate, SL, Pereira, NG, and Jelinek, GA
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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 i
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- 2016
27. Associations of Lifestyle, Medication, and Socio-Demographic Factors with Disability in People with Multiple Sclerosis: An International Cross-Sectional Study
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Reindl, M, Jelinek, GA, De Livera, AM, Marck, CH, Brown, CR, Neate, SL, Taylor, KL, Weiland, TJ, Reindl, M, Jelinek, GA, De Livera, AM, Marck, CH, Brown, CR, Neate, SL, Taylor, KL, and Weiland, TJ
- Abstract
OBJECTIVE: Emerging 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 METHODS: A 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. RESULTS: RRRs 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). CONCLUSIONS: Healthier 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.
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- 2016
28. Prevalence of Comorbidities, Overweight and Obesity in an International Sample of People with Multiple Sclerosis and Associations with Modifiable Lifestyle Factors
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Ramagopalan, SV, Marck, CH, Neate, SL, Taylor, KL, Weiland, TJ, Jelinek, GA, Ramagopalan, SV, Marck, CH, Neate, SL, Taylor, KL, Weiland, TJ, and Jelinek, GA
- Abstract
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
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- 2016
29. Lifestyle, medication and socio-demographic determinants of mental and physical health-related quality of life in people with multiple sclerosis
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Jelinek, GA, De Livera, AM, Marck, CH, Brown, CR, Neate, SL, Taylor, KL, Weiland, TJ, Jelinek, GA, De Livera, AM, Marck, CH, Brown, CR, Neate, SL, Taylor, KL, and Weiland, TJ
- Abstract
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
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- 2016
30. Lifestyle changes and patient-reported outcomes over five years in a sample of people with multiple sclerosis after a single multimodal intensive lifestyle education workshop.
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Reece J, Jelinek GA, Milanzi E, Simpson-Yap S, Neate SL, Taylor KL, Jelinek PL, Davenport R, Bevens W, and Yu M
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- Humans, Female, Male, Middle Aged, Adult, Self Efficacy, Patient Education as Topic methods, Exercise, Multiple Sclerosis therapy, Life Style, Quality of Life, Patient Reported Outcome Measures
- Abstract
Introduction: Modifiable lifestyle risk factors for progression of multiple sclerosis (MS) have been increasingly studied. This study employed a single-group design involving a one-off intensive live-in educational workshop on lifestyle modification for people with MS. We aimed to examine changes in a range of clinical and lifestyle variables and quality of life, self-efficacy, physical impact of MS and disability from baseline to 3- and 5-years post-intervention., Methods: 95 participants completed the baseline survey. Data included lifestyle risk factors of diet quality, meat and dairy consumption, omega 3 and vitamin D supplementation, physical activity, stress reducing activities, and smoking status, and use of disease-modifying therapies (DMTs). Patient-reported outcomes included health-related quality of life, self-efficacy, physical impact of MS and disability. Generalised estimating equation models were used to account for within-participant correlation over time., Results: Sixty participants (63.2%) provided data at 3- and 5-years. Significant improvements in diet quality, omega 3 supplementation, and non-smoking were seen at both timepoints. Use of DMTs and disability remained unchanged. Mental (8.8- and 6.9-point) and physical (10.5- and 7.3-point) quality of life, and self-efficacy (2.4- and 1.9-point) improved significantly at 3- and 5-years, respectively. Physical impact of MS reduced from baseline to 3-years (-3.7 points) with a trend towards reduction at 5-years (-2.9 points; p = 0.079)., Conclusions: Education on lifestyle modification can lead to lifestyle modification and short and long-term improvements in mental and physical wellbeing outcomes. Results suggest potential value in lifestyle modification as an adjunctive component to standard therapy for MS., Competing Interests: Declarations. Ethical approval: All procedures performed were in accordance with the ethical standards of the institutional research committee (Human Research Ethics Committee of the University of Melbourne [HREC ID: 0723028.1]) and with the 1964 Helsinki declaration and its later amendments. Informed consent: Informed consent was obtained from all participants in the study. Conflict of interest: GAJ [18, 19] and SLN [19] receive royalties from the books referenced., (© 2024. The Author(s).)
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- 2025
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31. Stressful life events and depression and fatigue in people with multiple sclerosis: a cross-sectional analysis of an international cohort.
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Reece JC, Neate SL, Davenport RA, Milanzi E, Nag N, Bevens W, Yu M, Jelinek GA, and Simpson-Yap S
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- Humans, Life Change Events, Cross-Sectional Studies, Fatigue epidemiology, Fatigue etiology, Recurrence, Stress, Psychological psychology, Depression epidemiology, Depression etiology, Depression diagnosis, Multiple Sclerosis complications, Multiple Sclerosis epidemiology, Multiple Sclerosis psychology
- Abstract
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., (© 2023. The Author(s).)
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- 2024
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32. Longitudinal associations between quality of diet and disability over 7.5 years in an international sample of people with multiple sclerosis.
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Simpson-Yap S, Neate SL, Nag N, Probst YC, Yu M, Jelinek GA, and Reece JC
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- Humans, Prospective Studies, Diet, Life Style, Surveys and Questionnaires, Multiple Sclerosis epidemiology, Multiple Sclerosis complications
- Abstract
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 (aβ = -0.38, 95% CI -0.78, 0.01 and aβ = -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 (aβ = 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 (aβ = 0.28, 95% CI 0.02, 0.54 and aβ = 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., (© 2023 The Authors. European Journal of Neurology published by John Wiley & Sons Ltd on behalf of European Academy of Neurology.)
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- 2023
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33. The association between tobacco smoking and depression and anxiety in people with multiple sclerosis: A systematic review.
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Vong V, Simpson-Yap S, Phaiju S, Davenport RA, Neate SL, Pisano MI, and Reece JC
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- Humans, Cross-Sectional Studies, Prospective Studies, Tobacco Smoking, Depression epidemiology, Multiple Sclerosis
- Abstract
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., Competing Interests: Declaration of Competing Interest SN is a co-editor of Overcoming Multiple Sclerosis Handbook: Roadmap to Good Health. SN is a facilitator of Overcoming MS educational workshops for people with MS., (Copyright © 2023 The Author(s). Published by Elsevier B.V. All rights reserved.)
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- 2023
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34. A multiple sclerosis lifestyle behavior online course: Qualitative analysis of participants' motivations, expectations and experiences.
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Neate SL, Bevens W, Jelinek PL, Gray KM, Weiland TJ, Nag N, Simpson-Yap S, Jelinek GA, Yu M, and Reece JC
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- Humans, Life Style, Behavior Therapy, Motivation, Multiple Sclerosis
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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., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2022 Neate, Bevens, Jelinek, Gray, Weiland, Nag, Simpson-Yap, Jelinek, Yu and Reece.)
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- 2022
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35. A qualitative analysis of free text comments of participants from a massive open online mindfulness course.
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Neate SL, Reece JC, Hassed C, Chambers R, Connaughton S, and Nag N
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- Humans, Learning, Mindfulness
- Abstract
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., Competing Interests: CH and RC are creators and educators of the MWPP course and SC is a course mentor and moderates the discussion forums. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2022 Neate, Reece, Hassed, Chambers, Connaughton and Nag.)
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- 2022
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36. The Feasibility of a Web-Based Educational Lifestyle Program for People With Multiple Sclerosis: A Randomized Controlled Trial.
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Bevens W, Weiland TJ, Gray K, Neate SL, Nag N, Simpson-Yap S, Reece J, Yu M, and Jelinek GA
- Subjects
- Australia, Feasibility Studies, Humans, Internet, Life Style, Multiple Sclerosis therapy
- Abstract
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)., Competing Interests: GJ and SN have previously received remuneration for facilitating lifestyle modification workshops. GJ receives royalties from his book “Overcoming multiple sclerosis: the 7-step recovery program.” The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2022 Bevens, Weiland, Gray, Neate, Nag, Simpson-Yap, Reece, Yu and Jelinek.)
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- 2022
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37. Experiences of and attitudes to lifestyle modification for the management of multiple sclerosis: A qualitative analysis of free-text survey data.
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Neate SL, Donald A, Jelinek GA, and Nag N
- Subjects
- Behavior Therapy, Humans, Life Style, Optimism, Surveys and Questionnaires, Multiple Sclerosis psychology, Multiple Sclerosis therapy
- Abstract
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., (© 2021 The Authors. Health Expectations published by John Wiley & Sons Ltd.)
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- 2022
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38. Associations between Lifestyle Behaviors and Quality of Life Differ Based on Multiple Sclerosis Phenotype.
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Nag N, Yu M, Jelinek GA, Simpson-Yap S, Neate SL, and Schmidt HK
- Abstract
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.
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- 2021
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39. 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.
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Weiland TJ, Nag N, De Livera A, Jelinek GA, Neate SL, Bevens W, and Simpson-Yap S
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- Fatigue epidemiology, Fatigue etiology, Healthy Lifestyle, Humans, Life Style, Probability, Multiple Sclerosis complications, Multiple Sclerosis epidemiology
- Abstract
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., (© 2021 European Academy of Neurology.)
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- 2021
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40. Assessing Lifestyle Behaviours of People Living with Neurological Conditions: A Panoramic View of Community Dwelling Australians from 2007-2018.
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Nag N, Lin X, Yu M, Simpson-Yap S, Jelinek GA, Neate SL, and Levin M
- Abstract
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.
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- 2021
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41. Views of the Future of Partners of People with Multiple Sclerosis Who Attended a Lifestyle Modification Workshop: A Qualitative Analysis of Perspectives and Experiences.
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Neate SL, Taylor KL, Nag N, Jelinek GA, Simpson-Yap S, Bevens W, and Weiland TJ
- Subjects
- Adult, Aged, Behavior Therapy, Empowerment, Female, Forecasting, Hope, Humans, Male, Middle Aged, Optimism, Patient Education as Topic, Young Adult, Caregivers psychology, Life Style, Multiple Sclerosis therapy, Psychiatric Rehabilitation
- Abstract
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.
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- 2020
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42. Therapeutic utilization of meditation resources by people with multiple sclerosis: insights from an online patient discussion forum.
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O'Donnell JM, Jelinek GA, Gray KM, De Livera A, Brown CR, Neate SL, O'Kearney EL, Taylor KL, Bevens W, and Weiland TJ
- Subjects
- Chronic Disease, Humans, Meditation, Multiple Sclerosis therapy
- Abstract
We aimed to describe website traffic and qualitatively analyze an e-health community discussion forum. Participants in this study were people affected by multiple sclerosis visiting the Overcoming Multiple Sclerosis (OMS) website. This mixed methods study combined descriptive analysis of website traffic over 7 years and 1 month, and qualitative analysis of 1 week of posts in the meditation topic, coded into theme groups using qualitative thematic analysis. There were 166 meditation topics posted with 21,530 initial views of primary post and 785 sub-post responses. Meditation posts and sub-posts received 368,713 replies. Number of views increased from 4,684 in 2011 to over 80,000 in 2017, a considerably greater rate of increase than overall traffic. Qualitative analysis of posts on the meditation forum identified themes of barriers and enablers to utilization of meditation resources. Enablement themes dominated, observed across six of the seven theme groups with various forms of positive social and emotional support to learn and practice meditation. One theme, negative emotion, was identified as a barrier. The OMS peer-to-peer patient online discussion forum serves important functions in encouraging, educating and enabling its growing online community. Our analysis may help improve and innovate online support for lifestyle management in many chronic diseases.
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- 2020
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43. SF-6D health state utilities for lifestyle, sociodemographic and clinical characteristics of a large international cohort of people with multiple sclerosis.
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Campbell JA, Jelinek GA, Weiland TJ, Nag N, Neate SL, Palmer AJ, Mulhern B, De Livera A, and Simpson-Yap S
- Subjects
- Adolescent, Adult, Aged, Cohort Studies, Female, Humans, Male, Middle Aged, Multiple Sclerosis psychology, Socioeconomic Factors, Young Adult, Life Style, Multiple Sclerosis epidemiology, Quality of Life psychology
- Abstract
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.
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- 2020
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44. Mastery is associated with greater physical and mental health-related quality of life in two international cohorts of people with multiple sclerosis.
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O'Kearney EL, Brown CR, Jelinek GA, Neate SL, Taylor KT, Bevens W, De Livera AM, Simpson S Jr, and Weiland TJ
- Subjects
- Adult, Cross-Sectional Studies, Persons with Disabilities, Female, Humans, Male, Middle Aged, Severity of Illness Index, Multiple Sclerosis psychology, Quality of Life psychology, Self Efficacy
- Abstract
Background: Mastery is the sense of being in control of one's life and improvement in mastery may help to enhance quality of life. Little research has explored mastery in people with multiple sclerosis (MS), including its association with quality of life., Objective: To explore the association between mastery and health-related quality of life (HRQOL) in people with MS., Method: Two cross-sectional cohorts of adults with MS (n = 1401 and n = 573), recruited through convenience sampling, completed an online survey which measured mastery using the Pearlin Mastery Scale, physical and mental HRQOL via physical and mental health composite scores of MSQOL-54, along with other covariates, including demographics, clinical characteristics and lifestyle factors. Linear regression assessed associations between mastery and physical HRQOL adjusting for age, sex, education, disability and depression, and between mastery and mental HRQOL adjusting for age, sex, education, disability and clinically significant fatigue., Results: Greater mastery score was associated with higher physical and mental HRQOL in both cohorts, such that a one-point increase in the PMS was associated with an increase of 2.9 (95% Confidence Interval (CI): 2.6, 3.1) and 2.8 points (95% CI: 2.4, 3.2) in the means of physical HRQOL score in the first and second cohorts respectively, and a 2.9-point (95% CI: 2.7, 3.1) and 3.1-point (95% CI: 2.7, 3.4) increase in the means of mental HRQOL score. A dose-dependent relationship was demonstrated between a quartile categorical mastery variable and both physical and mental HRQOL in both cohorts. Mastery was associated with all subscores of both physical and mental HRQOL., Conclusions: Greater mastery is associated with better physical and mental quality of life. Efforts to improve the sense of self control and agency of people with MS may have benefits for their quality of life, even despite clinical features of the illness., Competing Interests: Declarations of Competing Interest GJ receives royalties for his books, Overcoming Multiple Sclerosis and Recovering from Multiple Sclerosis. GJ, SN and KT have received remuneration for conducting lifestyle educational workshops for people with MS., (Copyright © 2019 Elsevier B.V. All rights reserved.)
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- 2020
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45. On the path together: Experiences of partners of people with multiple sclerosis of the impact of lifestyle modification on their relationship.
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Neate SL, Taylor KL, Jelinek GA, De Livera AM, Simpson S Jr, Bevens W, and Weiland TJ
- Subjects
- Activities of Daily Living psychology, Adaptation, Psychological, Adult, Australia, Europe, Female, Humans, Male, Middle Aged, New Zealand, United Kingdom, Home Nursing psychology, Life Style, Multiple Sclerosis psychology, Quality of Life psychology, Spouses psychology
- Abstract
Multiple sclerosis (MS) has a major impact on the relationship of couples living with the illness. Although some positives of dealing with MS as a couple have been identified, MS has been associated with higher rates of relationship breakdown and worse Quality of Life (QOL) for both people in the relationship, especially if the person with MS experiences a decline in mental or physical health or develops disability. Modification of lifestyle-related risk factors has been associated with improved outcomes for people with MS, including physical and mental health-related QOL, and these improved outcomes may lead to improved experiences for their partners. We aimed to explore the perspectives and experiences of the partners of people with MS, when the people with MS had undertaken an intensive residential workshop regarding healthy lifestyle, to understand the impact of MS and lifestyle modification on these partners' experiences of their relationship. Within the framework of Heidegger's interpretive phenomenology, semi-structured interviews were thematically analysed. Participants were in a spousal relationship with people with MS who had attended an intensive residential workshop regarding modification of lifestyle-related risk factors between 2002 and 2016. Participants lived in Australia, New Zealand, the United Kingdom and Europe. Three major themes were identified relating to the couple's relationships: providing support, remaining connected and togetherness. Aspects of these themes, not commonly previously reported, included the personal and relationship benefits experienced from providing support with lifestyle modification, improved communication, and the resultant greater sense of closeness. These experiences of partners of people with MS improve our understanding of both the complexities of living with MS and adopting lifestyle modification, and suggest some potential benefits to relationships., (© 2019 The Authors. Health and Social Care in the Community published by John Wiley & Sons Ltd.)
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- 2019
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46. Differential multiple sclerosis treatment allocation between Australia and New Zealand associated with clinical outcomes but not mood or quality of life.
- Author
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Phyo AZZ, Jelinek GA, Brown CR, O'Kearney E, Neate SL, De Livera AM, Taylor KL, Bevens W, Simpson S Jr, and Weiland TJ
- Subjects
- Adult, Australia, Fatigue etiology, Female, Humans, Male, Middle Aged, Multiple Sclerosis complications, New Zealand, Affect physiology, Disease Progression, Fatigue physiopathology, Immunologic Factors therapeutic use, Multiple Sclerosis drug therapy, Multiple Sclerosis physiopathology, Quality of Life, Severity of Illness Index, Treatment Outcome
- Abstract
Background: Differential treatment allocation may impact on clinical phenotype in MS and in turn upon quality of life (QoL)., Objectives: (a) Investigate the association between disease-modifying drugs (DMDs) use and relapse frequency, disability, clinically significant fatigue, and physical and mental health-related QoL among participants with MS residing in Australia and New Zealand (NZ); (b) assess whether these associations differed between Australia and NZ., Methods: Disability and fatigue were measured by PDDS and FSS, respectively. QoL was assessed by MSQOL-54. Associations were assessed by binomial and multinomial logistic regression, as appropriate. Multivariable models were adjusted for demographic and clinical covariates, as appropriate., Results: 837 participants (627 from Australia; 210 from NZ) were identified from an online cohort of people with MS. First- and second-generation DMD use was associated with higher adjusted-odds of fatigue and disability, though not with 12-month relapse number. DMD use was not independently associated with physical or mental QoL. The association of first-generation DMD use with moderate disability differed between nations, such that treatment was associated with lower odds in Australia but not in NZ; a similar but a small difference was found for severe disability. No differences were seen in the DMD association with relapse number, nor with fatigue or QoL, between Australia and NZ., Conclusion: The differential treatment allocation associations in NZ are evident in the DMD-disability association, but there is no evidence that this treatment regimen has negative associations with fatigue, mood, or QoL., (Copyright © 2019 The Authors. Published by Elsevier B.V. All rights reserved.)
- Published
- 2019
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47. Associations of demographic and clinical factors with depression over 2.5-years in an international prospective cohort of people living with MS.
- Author
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Simpson S Jr, Taylor KL, Jelinek GA, De Livera AM, Brown CR, O'Kearney E, Neate SL, Bevens W, and Weiland TJ
- Subjects
- Adolescent, Adult, Age Distribution, Aged, Aged, 80 and over, Antidepressive Agents therapeutic use, Cohort Studies, Depression diagnosis, Depression drug therapy, Disability Evaluation, Fatigue epidemiology, Female, Humans, International Cooperation, Male, Marital Status, Middle Aged, Multiple Sclerosis psychology, Psychiatric Status Rating Scales, Quality of Life, Surveys and Questionnaires, Young Adult, Demography methods, Depression epidemiology, Multiple Sclerosis epidemiology
- Abstract
Background: Depression is highly prevalent among people with MS, and determinants thereof would be useful., Objectives: We examined the relationship of demographic and clinical factors with positive depression-screen and change in depression over 2.5 years in people with MS., Methods: Positive depression-screen assessed by Patient Health Questionnaire (PHQ)-2 and PHQ-9. Associations of demographic and clinical factors with depression-screen and change thereof assessed using multivariable regression models, adjusted for age, sex, disability, fatigue, antidepressant use, and baseline PHQ-2, as appropriate., Results: Overweight/obese BMI, comorbidity number, fatigue, and disability were associated with positive depression-screen, while married/partnered state, being employed, higher perceived socioeconomic status, and greater education were inversely associated with depression-screen. After adjustment, only marital status, socioeconomic status, antidepressant medication use, and fatigue were associated with risk of newly positive depression-screen. MS type, relapse number and immunomodulatory medication use were not associated with depression-screen after controlling for disability and fatigue., Conclusion: In a large prospective cohort study of depression in people with MS, we substantiated several potential determinants of a positive depression-screen and depression trajectory, particularly fatigue. Given that fatigue is the most common and most significant clinical symptom for people with MS, efforts to reduce fatigue may have follow-on benefits for reducing depression., (Copyright © 2019. Published by Elsevier B.V.)
- Published
- 2019
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48. Taking active steps: Changes made by partners of people with multiple sclerosis who undertake lifestyle modification.
- Author
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Neate SL, Taylor KL, Jelinek GA, De Livera AM, Brown CR, and Weiland TJ
- Subjects
- Adaptation, Psychological, Adult, Aged, Attitude to Health, Female, Health Promotion methods, Humans, Interviews as Topic, Male, Middle Aged, Patient Education as Topic, Psychosocial Support Systems, Young Adult, Healthy Lifestyle, Multiple Sclerosis psychology, Multiple Sclerosis therapy, Risk Reduction Behavior, Spouses psychology
- Abstract
Background: Multiple sclerosis (MS), a demyelinating condition of the central nervous system with an unpredictable course, has a major impact on the lives of people with MS. Partners of people with MS may be significantly affected by the diagnosis, management and uncertainty around disease progression and may provide substantial support and care. Modification of lifestyle risk factors in conjunction with standard medical management has been associated with improved physical and mental quality of life. Adopting major lifestyle modification may have a multi-faceted impact on the person with MS and their partner. Experiences of partners of people with MS have been previously explored, but the experiences of partners of people with MS who adopt this strategy have not. As part of a larger study that aimed to explore partners' lived experiences of and attitudes towards MS and lifestyle modification, this study reports the active steps and significant changes partners undertook to assist the person with MS and, at times, to also modify their own lives., Design: Within an interpretive framework, using Heidegger's phenomenological philosophy, a qualitative study of semi-structured interviews was conducted., Participants: Aged greater than 18 years and in a spousal relationship with a person with MS who had undertaken an intensive residential lifestyle educational intervention promoting healthy lifestyle., Results: Themes identified were: adjusting to lifestyle modification, understanding motivations and practical aspects of adjustment; seeking knowledge and support, exploring the ways partners sought positive support for themselves and the person with MS and abandoned negative influences; and embracing well-being, commitment and change, describing the major changes that partners made to their lives professionally and personally., Conclusions: The experiences of these partners provide clinicians with insight into potential motivations and outcomes of lifestyle modification and suggest potentially positive aspects for those directly and indirectly affected by MS., Competing Interests: I have read the journal's policy and the authors of this manuscript have the following competing interests: SN, KT and GJ have received remuneration for facilitation of the lifestyle educational interventions. GJ has received royalties for his book “Overcoming Multiple Sclerosis: the evidence-based 7 step guide to recovery.”
- Published
- 2019
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49. Self-reported cognitive function in a large international cohort of people with multiple sclerosis: associations with lifestyle and other factors.
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Jelinek PL, Simpson S Jr, Brown CR, Jelinek GA, Marck CH, De Livera AM, O'Kearney E, Taylor KL, Neate SL, and Weiland TJ
- Subjects
- Adolescent, Adult, Aged, Aged, 80 and over, Attention, Cognition Disorders etiology, Cognition Disorders psychology, Cohort Studies, Cross-Sectional Studies, Female, Health Surveys, Humans, Male, Memory, Middle Aged, Quality of Life, Self Report, Young Adult, Cognition, Life Style, Multiple Sclerosis psychology
- Abstract
Background and Purpose: We aimed to estimate the prevalence of perceived cognitive impairment (PCI) and explore its associations with lifestyle and disease characteristics in a large international cohort of people with multiple sclerosis (MS)., Methods: This study was a cross-sectional analysis. Participants rated their cognitive function over the preceding 4 weeks using four questions in a subscale within the Multiple Sclerosis Quality of Life questionnaire (MSQOL-54). These questions assessed perceived concentration, attention and memory by the patient and family/friends. Four definitions of PCI were derived, ranging from lowest to highest specificity. Associations with PCI were assessed by log-binomial regression., Results: The prevalence of PCI in our sample ranged from 41.0% (95% confidence interval, 39.0-43.0) using the least-specific definition to 11.6% (95% confidence interval, 10.3-12.9) using the most specific definition. A number of factors were associated with PCI, increasing in magnitude as the definition specificity increased, including positive associations for smoking and body mass index, whereas physical activity, dietary quality and use of vitamin D/omega-3 supplements were inversely associated with PCI., Conclusions: Our study reports associations between healthy lifestyle behaviours and PCI in people with MS. Although reverse causality is a potential explanation for our findings, previous studies have shown comparable associations with healthy lifestyle and MS onset and progression. Subject to external validation, these results suggest benefits realized from a healthy lifestyle in people with MS., (© 2018 The Authors. European Journal of Neurology published by John Wiley & Sons Ltd on behalf of European Academy of Neurology.)
- Published
- 2019
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50. Health Outcomes and Lifestyle in a Sample of People With Multiple Sclerosis (HOLISM): Longitudinal and Validation Cohorts.
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Weiland TJ, De Livera AM, Brown CR, Jelinek GA, Aitken Z, Simpson SL Jr, Neate SL, Taylor KL, O'Kearney E, Bevens W, and Marck CH
- 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.
- Published
- 2018
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