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1.
Mult Scler Relat Disord ; 86: 105615, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38636270

RESUMO

BACKGROUND: Fatigue and disability are indicators of disease progression experienced by many people with multiple sclerosis (pwMS). Understanding trajectories of these outcomes, and their predictors, may provide insight to potential interventions for MS management. METHODS: Survey data from 839 pwMS from the Health Outcomes and Lifestyle in pwMS study were analysed. Fatigue was defined as mean Fatigue Severity Scale >5, and severe disability as Patient Determined Disease Steps >5. Group-based trajectory modelling was used to identify fatigue and disability trajectories over five-years. Dietary predictors associated with outcome trajectory group membership were assessed using log-binomial regression. Demographic and clinical characteristics were considered in multivariable models. RESULTS: Distinct trajectories for fatigue and disability were identified. For fatigue, 58 % of pwMS were assigned to low-, and 42 % to high-, fatigue trajectory groups. For disability, 85 % of pwMS were assigned to low-, and 15 % to high-, disability groups. Baseline high-quality diet, and omega-3 and vitamin D supplement use, were associated with reduced risk of being in high-fatigue and high-disability trajectories, while meat and dairy consumption were associated with increased risk. CONCLUSIONS: A high-quality diet, avoiding meat and dairy, and omega-3 and vitamin D supplement use, individually predict better fatigue and disability trajectories. Dietary modifications should be considered in MS management.


Assuntos
Dieta , Suplementos Nutricionais , Fadiga , Ácidos Graxos Ômega-3 , Esclerose Múltipla , Vitamina D , Humanos , Esclerose Múltipla/dietoterapia , Esclerose Múltipla/fisiopatologia , Feminino , Masculino , Fadiga/etiologia , Pessoa de Meia-Idade , Vitamina D/administração & dosagem , Ácidos Graxos Ômega-3/administração & dosagem , Adulto , Dieta/estatística & dados numéricos , Progressão da Doença , Pessoas com Deficiência/estatística & dados numéricos , Índice de Gravidade de Doença
2.
J Med Internet Res ; 26: e53372, 2024 Feb 09.
Artigo em Inglês | MEDLINE | ID: mdl-38335016

RESUMO

BACKGROUND: Digital technologies have afforded people living with multiple sclerosis (MS) access to telehealth consultations, diagnostic tools, and monitoring. Although health care professionals remain the most trusted source of information, the internet has emerged as a valuable resource for providing MS-related information, particularly during the COVID-19 pandemic. Notably, people living with MS are increasingly seeking educational content for a range of topics related to the self-management of MS; however, web-based information seeking remains largely underevaluated. To address this gap and ensure that web-based health-related information is accessible and engaging, this study used qualitative methods to analyze the reflections from participants of web-based educational programs for people living with MS. OBJECTIVE: This study aimed to explore the motivations, behaviors, and expectations of web-based health information seeking for people living with MS. METHODS: We conducted semistructured interviews for 38 people living with MS 1 month after they completed the novel MS Online Course, which provided information on modifiable lifestyle-related risk factors for people living with MS. Of the 38 participants, 22 (58%) completed the intervention course and 16 (42%) completed the standard care course. Inductive thematic analysis was used within a qualitative paradigm, and 2 authors coded each interview separately and arrived at themes with consensus. RESULTS: We identified 2 themes: motivation to learn and MS information on the web. The diagnosis of MS was described as a pivotal moment for precipitating web-based information seeking. People living with MS sought lifestyle-related information to facilitate self-management and increase control of their MS. Although social media sites and MS websites were considered useful for providing both support and information, discretion was needed to critically appraise information. Recognizable institutions were frequently accessed because of their trustworthiness. CONCLUSIONS: This study provided novel insights into the motivations of people living with MS for seeking web-based health information. Furthermore, their preferences for the content and format of the web-based information accessed and their experiences and reactions to this information were explored. These findings may guide educators, researchers, and clinicians involved in MS care to optimize the engagement and processing of web-based health information seeking by people living with MS.


Assuntos
Comportamento de Busca de Informação , Esclerose Múltipla , Humanos , Esclerose Múltipla/terapia , Pandemias , Pessoal de Saúde , Internet
3.
Acta Neurol Belg ; 124(2): 457-466, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-37770791

RESUMO

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.


Assuntos
Depressão , Esclerose Múltipla , Humanos , Depressão/epidemiologia , Depressão/etiologia , Depressão/diagnóstico , Acontecimentos que Mudam a Vida , Estudos Transversais , Esclerose Múltipla/complicações , Esclerose Múltipla/epidemiologia , Esclerose Múltipla/psicologia , Fadiga/epidemiologia , Fadiga/etiologia , Recidiva , Estresse Psicológico/psicologia
4.
Eur J Neurol ; 30(10): 3200-3211, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37433564

RESUMO

BACKGROUND AND PURPOSE: Modifiable lifestyle factors, including diet, have been implicated in multiple sclerosis (MS) progression, but prospective evidence is limited. The aim of this study was to examine prospective relationships between quality of diet and subsequent disability over 7.5 years in an international cohort of people living with MS (pwMS). METHODS: Data from 602 participants in the HOLISM (Health Outcomes and Lifestyle In a Sample of people with Multiple sclerosis) study were analysed. Quality of diet was assessed using the modified Diet Habits Questionnaire (DHQ). Disability was assessed using the Patient-determined MS Severity Score (P-MSSS). Characteristics of disability were assessed by log-binomial, log-multinomial and linear regression, adjusted for demographic and clinical covariates, as appropriate. RESULTS: Higher baseline total DHQ scores (>80-89, >89%) were associated with lower risks of increased P-MSSS at 7.5 years (adjusted risk ratio [aRR] 0.46, 95% confidence interval [CI] 0.23, 0.91 and aRR 0.48, 95% CI 0.26, 0.89, respectively), and with less P-MSSS accrual (aß = -0.38, 95% CI -0.78, 0.01 and aß = -0.44, 95% CI -0.81, -0.06). Of the DHQ domains, fat subscore was most strongly associated with subsequent disability. Participants with reducing baseline-to-2.5- years total DHQ scores had greater risk of increased P-MSSS at 7.5 years (aRR 2.77, 95% CI 1.18, 6.53) and higher P-MSSS accrual (aß = 0.30, 95% CI 0.01, 0.60). Participants reporting baseline meat and dairy consumption had greater risk of increased P-MSSS at 7.5 years (aRR 2.06, 95% CI 1.23, 3.45 and aRR 2.02, 95% CI 1.25, 3.25) and higher P-MSSS accrual (aß = 0.28, 95% CI 0.02, 0.54 and aß = 0.43, 95% CI 0.16, 0.69, respectively). However, reported meat consumption was confounded by quality of diet. Changes in meat or dairy consumption from baseline were inconsistently associated with subsequent disability. CONCLUSIONS: We show for the first time robust long-term associations between quality of diet and subsequent disability progression in pwMS. Subject to replication, dietary modification may represent a point of intervention for reducing disability in pwMS.


Assuntos
Esclerose Múltipla , Humanos , Esclerose Múltipla/epidemiologia , Esclerose Múltipla/complicações , Estudos Prospectivos , Dieta , Estilo de Vida , Inquéritos e Questionários
5.
Health Qual Life Outcomes ; 21(1): 61, 2023 Jun 25.
Artigo em Inglês | MEDLINE | ID: mdl-37357308

RESUMO

BACKGROUND: The Multiple Sclerosis Quality of Life-54 (MSQOL-54) is one of the most commonly-used MS-specific health-related quality of life (HRQOL) measures. It is a multidimensional, MS-specific HRQOL inventory, which includes the generic SF-36 core items, supplemented with 18 MS-targeted items. Availability of an adaptive short version providing immediate item scoring may improve instrument usability and validity. However, multidimensional computerized adaptive testing (MCAT) has not been previously applied to MSQOL-54 items. We thus aimed to apply MCAT to the MSQOL-54 and assess its performance. METHODS: Responses from a large international sample of 3669 MS patients were assessed. We calibrated 52 (of the 54) items using bifactor graded response model (10 group factors and one general HRQOL factor). Then, eight simulations were run with different termination criteria: standard errors (SE) for the general factor and group factors set to different values, and change in factor estimates from one item to the next set at < 0.01 for both the general and the group factors. Performance of the MCAT was assessed by the number of administered items, root mean square difference (RMSD), and correlation. RESULTS: Eight items were removed due to local dependency. The simulation with SE set to 0.32 (general factor), and no SE thresholds (group factors) provided satisfactory performance: the median number of administered items was 24, RMSD was 0.32, and correlation was 0.94. CONCLUSIONS: Compared to the full-length MSQOL-54, the simulated MCAT required fewer items without losing precision for the general HRQOL factor. Further work is needed to add/integrate/revise MSQOL-54 items in order to make the calibration and MCAT performance efficient also on group factors, so that the MCAT version may be used in clinical practice and research.


Assuntos
Teste Adaptativo Computadorizado , Esclerose Múltipla , Qualidade de Vida , Teste Adaptativo Computadorizado/métodos , Simulação por Computador , Esclerose Múltipla/diagnóstico , Inquéritos e Questionários , Humanos , Adolescente , Adulto , Pessoa de Meia-Idade , Idoso , Idoso de 80 Anos ou mais , Psicometria
6.
BMC Neurol ; 23(1): 249, 2023 Jun 29.
Artigo em Inglês | MEDLINE | ID: mdl-37386385

RESUMO

BACKGROUND: People living with multiple sclerosis (plwMS) seek access to information on evidence-based lifestyle-related risk factors associated with multiple sclerosis (MS). As the internet has made delivery of lifestyle information increasingly accessible and cost-effective, we designed the Multiple Sclerosis Online Course (MSOC) to deliver a multimodal lifestyle modification program for plwMS. Two MS online courses were developed: the intervention course based on lifestyle recommendations of the Overcoming Multiple Sclerosis (OMS) program and the standard-care course representing standard lifestyle recommendations from other MS websites. We examined for feasibility in a pilot randomised controlled trial (RCT), where satisfactory completion and accessibility were achieved across both study arms. From this success, a protocol for a larger RCT was developed to examine the effectiveness of MSOC in improving health-related quality of life (HRQoL) and other health outcomes in plwMS. METHODS/DESIGN: This single-blinded RCT will recruit n = 1,054 plwMS. Participants in the intervention arm will receive access to a MSOC with seven modules providing evidence-based information on the OMS program. Participants in the control group will receive access to a MSOC of identical format, with seven modules providing general MS-related information and lifestyle recommendations sourced from popular MS websites, e.g. MS societies. Participants will complete questionnaires at baseline and at 6, 12, and 30 months after course completion. The primary endpoint is HRQoL, as measured by MSQOL-54 (both physical and mental health domains) at 12 months following course completion. Secondary outcomes are changes to depression, anxiety, fatigue, disability, and self-efficacy as measured by Hospital Anxiety and Depression Scale, Patient-Determined Disease Steps and University of Washington Self-Efficacy Scale, respectively, assessed at each timepoint. Further assessments will include quantitative post-course evaluation, adoption and maintenance of behaviour change from follow-up survey data, and qualitative analysis of participants' outcomes and reasons for course completion or non-completion. DISCUSSION: This RCT aims to determine whether an online intervention course delivering evidence-based lifestyle modification recommendations based on the Overcoming Multiple Sclerosis program to plwMS is more effective at improving HRQoL, and other health outcomes post-intervention, compared with an online standard-care course. TRIAL REGISTRATION: This trial was registered prospectively with the Australian New Zealand Clinical Trials Registry, www.anzctr.org.au , identifier ACTRN12621001605886. DATE OF REGISTRATION: 25 November 2021.


Assuntos
Estilo de Vida , Esclerose Múltipla , Humanos , Austrália , Qualidade de Vida , Ansiedade , Ensaios Clínicos Controlados Aleatórios como Assunto
7.
Eur J Neurol ; 30(10): 3190-3199, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37338134

RESUMO

BACKGROUND AND PURPOSE: People with multiple sclerosis (pwMS) report reduced quality of life (QoL). Engagement with healthy lifestyle behaviours, including consuming a healthy diet, regular physical activity, and adequate vitamin D exposure, is associated with higher QoL. We aim to assess whether individual lifestyle behaviours are more beneficial to QoL than others, and whether there are additive benefits to QoL by engaging in multiple healthy behaviours concurrently. METHODS: Data from pwMS who completed an online survey at baseline, and at 2.5-, 5- and 7.5-year follow-up, were analysed. Behaviours assessed were consumption of a no-meat/dairy-plus-omega-3 supplementation diet, meditation practice, physical activity, non-smoking, and vitamin D exposure. Mental QoL (mQoL) and physical QoL (pQoL) were assessed by the Multiple Sclerosis Quality of Life (MSQOL-54) questionaire. Linear regression analyses were performed to assess associations of individual behaviours at baseline and follow-up time points with QoL, as well as between number of behaviours and QoL. RESULTS: At baseline, healthy diet and regular physical activity were associated with higher mQoL (5.3/100 and 4.0/100) and higher pQoL (7.8/100 and 6.7/100). Prospectively, diet was positively associated with mQoL, and physical activity with both mQoL and pQoL. At baseline, engagement with ≥3 behaviours was positively associated with mQoL and pQoL, with additive positive associations for each additional behaviour. Prospectively, engagement with ≥3 behaviours was positively associated with mQoL and pQoL, with strongest associations observed with engagement with five behaviours. CONCLUSION: Consumption of a healthy diet, and regular physical activity, are both potential interventions to improve QoL. Engagement with multiple lifestyle behaviours may provide additional benefits and should be encouraged and supported for multiple sclerosis management.


Assuntos
Esclerose Múltipla , Qualidade de Vida , Humanos , Esclerose Múltipla/terapia , Estilo de Vida Saudável , Estilo de Vida , Vitamina D , Vitaminas
8.
Front Nutr ; 10: 979380, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36937366

RESUMO

Introduction: Increasingly, dietary improvements have been shown to have positive associations with health outcomes in people with multiple sclerosis (pwMS). However, adhering to a MS-specific or high-quality diet may be a challenge. We therefore assessed the level of diet-adherence necessary to improve health outcomes of depression, fatigue, and disability. Methods: Data from an international population of pwMS followed over 7.5 years (n = 671) were analyzed. Self-reported diet quality via diet habits questionnaire (DHQ), and adherence to six MS-diets [Ashton Embry Best Bet, McDougall, Overcoming MS (OMS), Paleolithic (Paleo), Swank, and Wahls] were queried at two timepoints. Four levels of diet adherence were assessed: non-adherence at either timepoint; ceased at second timepoint; commenced at second timepoint; and ongoing at both timepoints. Associations between adherence to OMS and high-quality diet (DHQ score > median) with depression, fatigue, and disability, were assessed by log-binomial regression models adjusted for confounders. Results: Forty-two percent of pwMS reported ongoing-adherence to a MS-diet at both timepoints, OMS (33%), Swank (4%), Wahls (1.5%), other (<1%). Of these, only OMS-diet adherence was analyzed for associations due to data availability. Ongoing-adherence to the OMS-diet or a high-quality diet, was associated with lower depression compared to non-adherence [OMS: Risk ratios (RR) = 0.80, p = 0.021; DHQ: RR = 0.78, p = 0.009] and ceased-adherence (OMS: RR = 0.70, p = 0.008; DHQ: RR = 0.70, p = 0.010), respectively. Ongoing-adherence to OMS-diet was associated with lower fatigue (RR = 0.71, p = 0.031) and lower severe disability (RR = 0.43, p = 0.033) compared to ceased-adherence. Conclusion: Results suggest potential benefits of adherence to the OMS- or a high-quality diet on MS health outcomes, with ongoing-adherence likely best. Diet modification and maintenance may serve as a point of intervention to manage MS symptoms, especially depression, in pwMS.

9.
Qual Life Res ; 32(7): 1883-1896, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-36821020

RESUMO

BACKGROUND/PURPOSE: Health state utilities (HSU) are a subjective measure of an individual's health-related quality of life (HRQoL), adjusted by societal or patient relative preference weights for living in different states of health-related quality of life (HRQoL), derived from patient-reported responses to multi-attribute utility instrument (MAUI), and can be used as inputs for cost-utility analyses and in clinical assessment. This research assessed associations of diet with subsequent HSU in a large international cohort of people living with multiple sclerosis (MS), a progressive autoimmune condition of the central nervous system. METHODS: HSUs were generated from responses to Short-Form Six-Dimension (SF-6D) MAUI, and quality-of-the-diet by Diet Habits Questionnaire (DHQ). Cross-sectional, and short- and long-term prospective associations of DHQ with HSU evaluated by linear regression at 2.5- and 5-years. Pooled prospective associations between DHQ and HSU evaluated using linear and quantile regression. Analyses adjusted for relevant demographic and clinical covariates. RESULTS: Among 839 participants, baseline DHQ scores showed short- and long-term associations with subsequent HSU, each 10-unit increase in total DHQ score associated with 0.008-0.012 higher HSU (out of 1.00). These associations were dose-dependent, those in the top two quartiles of baseline DHQ scores having 0.01-0.03 higher HSU at follow-up, 0.03 being the threshold for a minimally clinically important difference. Fat, fiber, and fruit/vegetable DHQ subscores were most strongly and consistently associated with better HSU outcomes. However, baseline meat and dairy consumption were associated with 0.01-0.02 lower HSU at subsequent follow-up. CONCLUSIONS: A higher quality-of-the-diet showed robust prospective relationships with higher HSUs 2.5- and 5-years later, substantiating previous cross-sectional relationships in this cohort. Subject to replication, these results suggest interventions to improve the quality-of-the-diet may be effective to improve HRQoL in people living with MS.


Assuntos
Esclerose Múltipla , Qualidade de Vida , Humanos , Qualidade de Vida/psicologia , Estudos de Coortes , Dieta , Inquéritos e Questionários
10.
Front Public Health ; 10: 1022185, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36568793

RESUMO

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.


Assuntos
Motivação , Esclerose Múltipla , Humanos , Estilo de Vida , Terapia Comportamental
11.
Nutrients ; 14(21)2022 Oct 31.
Artigo em Inglês | MEDLINE | ID: mdl-36364830

RESUMO

Understanding the dietary characteristics of people living with multiple sclerosis (plwMS) may assist in the planning of nutrition interventions for multiple sclerosis; yet dietary assessment methods in existing studies are not well established. The aim of this study was to validate the psychometric properties (construct validity and internal consistency) of the Dietary Habits Questionnaire (DHQ) against repeated online 24-h recall dietary assessments. The DHQ is a 24-item tool that is scored using ten dietary sub-scores. Total DHQ scores can range from 20−100 and are considered indicative of the quality of dietary intake with higher scores reflecting increased quality. People living with a relapsing-remitting MS phenotype who had completed a modified DHQ were recruited from the international Health Outcomes and Lifestyle In a Sample of people with Multiple sclerosis (HOLISM) cohort. Repeated 24-h recall via the online Automated Self-administered Assessment-24 (ASA-24) tool were modelled to reflect usual dietary intakes using the Multiple Source Method. DHQ scores of eight sub-scores: three key nutrients, three food groups and two food preparation practices, were calculated and statistically compared with ASA-24 usual intake data. Principal component analysis of the ASA-24 data was undertaken to understand dietary patterns of the sample. Of the 105 participants, valid 24-h recall data were available for 96 plwMS (n = 66 1 day, n = 30 ≥ 2 day). The median total DHQ score was 84.50 (IQR: 77.04, 91.83) points. The highest absolute correlations were between the DHQ scores and ASA-24 data for cereal (r = 0.395, p < 0.001), fruit and vegetables (r = 0.436, p < 0.001), and total dietary fiber (r = 0.482, p < 0.001). Five dietary patterns emerged from the data explaining 42.12% variance and reflecting exposure of plwMS to the influence of 'MS diets'. The DHQ appears to be appropriate for screening participants with relapsing-remitting MS. Evidence-based dietary models focusing on food are required to monitor the quality of an overall dietary pattern and set priorities for the planning nutrition interventions for plwMS.


Assuntos
Ingestão de Energia , Esclerose Múltipla , Psicometria , Dieta , Inquéritos e Questionários , Verduras , Reprodutibilidade dos Testes
12.
Front Public Health ; 10: 852214, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35570898

RESUMO

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).


Assuntos
Esclerose Múltipla , Austrália , Estudos de Viabilidade , Humanos , Internet , Estilo de Vida , Esclerose Múltipla/terapia
13.
Mult Scler Relat Disord ; 62: 103804, 2022 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-35461058

RESUMO

BACKGROUND: Multiple sclerosis is a demyelinating autoimmune disease, presenting with heterogenous symptoms that impact daily living. Undertaking stress-reducing activities may reduce symptoms including depression and fatigue, and enhance mastery, the sense of control of one's life. We assessed cross-sectional associations of undertaking stress-reducing activities or meditation on depression, fatigue, and mastery, and 5-year prospective relationships between meditation and these outcomes. METHODS: Data were extracted from the longitudinal Health Outcomes and Lifestyle In a Sample of people with Multiple sclerosis (HOLISM) study. Stress-reducing activities were categorised to relaxation, physical, mind-body, and spiritual. Meditation was analysed as a dichotomous term, and for duration and frequency of practice. Depression, fatigue, and mastery were assessed by Patient's Health Questionnaire-9, Fatigue Severity Scale, and Pearlin Mastery Scale, respectively. Associations with depression, fatigue and mastery were assessed by log-binomial regression. Models were adjusted for age, sex, symptoms due to relapse, socioeconomic status, employment status, and antidepressant and anti-fatigue medication use, as appropriate. RESULTS: Cross-sectionally, physical and relaxation activities were associated with 40% and 33% lower frequencies of depression, respectively. Physical activities were additionally associated with 19% lower frequency of fatigue. Meditation was associated with 30% lower frequency of depression and 17% higher mastery. Prospectively, meditation was associated with 28% decreased depression, and 48% reduction of developing depression at 5-year follow-up. CONCLUSION: Potential benefits of undertaking stress-reducing activities, or meditation, on depression, fatigue, and mastery are promising and should be further assessed prospectively. Meditation practice should be encouraged as a safe and inexpensive intervention for prevention of depression.


Assuntos
Esclerose Múltipla , Estudos Transversais , Depressão/terapia , Fadiga/complicações , Fadiga/terapia , Humanos , Esclerose Múltipla/complicações , Esclerose Múltipla/terapia , Estudos Prospectivos , Qualidade de Vida
14.
J Med Internet Res ; 24(2): e27735, 2022 02 09.
Artigo em Inglês | MEDLINE | ID: mdl-35138262

RESUMO

BACKGROUND: Digital health interventions have revolutionized multiple sclerosis (MS) care by supporting people with MS to better self-manage their disease. It is now understood that the technological elements that comprise this category of digital health interventions can influence participant engagement in self-management programs, and people with MS can experience significant barriers, influenced by these elements, to remaining engaged during a period of learning. It is essential to explore the influence of technological elements in mitigating attrition. OBJECTIVE: This study aimed to examine the study design and technological elements of documented digital health interventions targeted at people with MS-digital health interventions that were intended to support a program of engagement over a defined period-and to explore how these correlated with attrition among participants of randomized controlled trials (RCTs). METHODS: We conducted a systematic review and meta-analysis of RCTs (n=32) describing digital health self-management interventions for people with MS. We analyzed attrition in included studies, using a random-effects model and meta-regression to measure the association between potential moderators. RESULTS: There were no measured differences in attrition between the intervention and control arms; however, some of the heterogeneity observed was explained by the composite technological element score. The pooled attrition rates for the intervention and control arms were 14.7% and 15.6%, respectively. CONCLUSIONS: This paper provides insight into the technological composition of digital health interventions designed for people with MS and describes the degree of attrition in both study arms. This paper will aid in the design of future studies in this area, particularly for digital health interventions of this type.


Assuntos
Esclerose Múltipla , Autogestão , Humanos , Esclerose Múltipla/terapia , Ensaios Clínicos Controlados Aleatórios como Assunto
15.
Mult Scler Relat Disord ; 60: 103710, 2022 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-35219239

RESUMO

BACKGROUND: There is increasing interest in the role of diet in multiple sclerosis (MS) progression and whether a healthier diet may lead to improved health and wellbeing in people living with MS (plwMS). OBJECTIVE: To assess the prospective relationship of the quality of dietary intakes with quality of life (QoL) in an international cohort of plwMS followed over 7.5 years. METHODS: Data from the Health Outcomes and Lifestyle In a Sample of people with Multiple sclerosis (HOLISM) cohort from baseline to 7.5-year review were analysed. Quality of the diet was assessed using the Diet Habits Questionnaire (DHQ). QoL was measured by the MSQOL-54, including physical and mental health composite scores and multiple subdomains. Linear regression was used to determine cross-sectional and prospective relationships with QoL, adjusted for clinical and demographic covariates. RESULTS: Amongst 948 participants, median physical- and mental-health QoL scores at 7.5-year review were 66.9 and 78.2, respectively. Baseline total DHQ was positively associated with subsequent change in physical-QoL to 7.5-year review, such that participants in the top two quartiles of baseline DHQ had 0.65 and 0.64 higher physical-QoL per year, though a similar association with mental-QoL did not persist on adjustment. Baseline meat consumption was associated with 0.38 lower physical-QoL per year, while baseline dairy consumption was associated with 0.50 and 0.41 lower physical- and mental-QoL per year, respectively. CONCLUSIONS: These results suggest efforts to improve the quality of dietary intake could be beneficial to the wellbeing of plwMS. Subject to replication, this aspect of lifestyle could be a useful intervention in better managing MS.


Assuntos
Esclerose Múltipla , Qualidade de Vida , Estudos Transversais , Dieta , Humanos , Esclerose Múltipla/complicações , Qualidade de Vida/psicologia , Inquéritos e Questionários
16.
Eur J Neurol ; 29(1): 225-236, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-34390078

RESUMO

BACKGROUND AND PURPOSE: Modifiable lifestyle factors, including diet, may affect clinical outcomes in multiple sclerosis (MS). This study assessed the relationships between diet, and disability, fatigue, and depression risk in people with MS. METHODS: Participants from the Health Outcomes and Lifestyle In a Sample of people with Multiple sclerosis (HOLISM) international cohort were assessed over 2.5 years. Dietary data were obtained using a modified Diet Habits Questionnaire (DHQ), disability using the calculated Patient-determined MS Severity Score (P-MSSS), fatigue using the Fatigue Severity Scale, and depression risk using the Patient Health Questionnaire-2. Participants reported whether they were experiencing symptoms due to a recent relapse. Cross-sectional and prospective relationships of diet and disease outcomes were explored, adjusted for relevant confounders. RESULTS: Among 1,346 participants, higher DHQ scores showed significant dose-dependent associations with lower frequencies of severe disability, fatigue, and depression risk, cross-sectionally. Prospectively, higher baseline DHQ scores were associated with a lower risk of increasing disability, those above the median having 41% and 36% lower risk of increasing disability, and 0.30 P-MSSS points less disability progression, but were not associated with fatigue or depression risk. Meat consumption was associated with 0.22 P-MSSS points higher disability cross-sectionally, while prospectively, baseline meat consumption was associated with 76% higher risk of increasing disability and 0.18 P-MSSS points higher disability progression. Dairy consumption showed mixed associations cross-sectionally and prospectively. CONCLUSIONS: These results show that better quality of diet, as well as not consuming meat, were associated with reduced disability progression in people with MS. Substantiation of these findings in other settings may inform opportunities to manage disability progression in people with MS using dietary modifications.


Assuntos
Esclerose Múltipla , Estudos de Coortes , Estudos Transversais , Dieta , Fadiga/complicações , Fadiga/etiologia , Humanos , Estudos Longitudinais , Carne , Esclerose Múltipla/complicações , Esclerose Múltipla/epidemiologia , Estudos Prospectivos , Qualidade de Vida
17.
Qual Life Res ; 31(6): 1789-1798, 2022 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-34813035

RESUMO

BACKGROUND: Mastery is the extent to which an individual perceives their life circumstances as being under their control and not predominantly influenced by external factors. The relationship of mastery with clinical outcomes in people with multiple sclerosis (pwMS) has not been well-researched. We assessed the relationships of mastery with fatigue, disability, relapse number, and depression risk among pwMS over 2.5 years' follow-up. METHODS: Data from the Health Outcomes and Lifestyle in a Sample of people with Multiple sclerosis study, among 839 participants who completed the 2.5 and 5-year reviews, were analysed. Mastery was measured by the Pearlin Mastery Scale, fatigue by Fatigue Severity Scale, depression risk by Patient Health Questionnaire-9, and disability by Patient-Determined Disease Steps, and diagnosed relapse number in the previous 12 months was queried. Cross-sectional and prospective analyses were undertaken by log-binomial, log-multinomial, and Poisson regression, as appropriate, adjusted for relevant confounders. RESULTS: Cross-sectionally, pwMS with the highest quartile mastery (> 25/28) had 90% lower frequency of depression risk, 60% lower frequency of clinically significant fatigue, and 77% fewer had severe disability, all largely robust to adjustment. Prospectively, those in the top two quartiles of mastery (> 21-25, > 25/28) had 66% and 74% lower subsequent depression risk, robust to adjustment. No significant associations were seen prospectively for change in fatigue, disability, or relapse number, however, and no robust associations of mastery with relapse number were evident. CONCLUSIONS: Prospectively, a protective relationship of mastery with subsequent risk of depression was observed, suggesting this may be a point of intervention to improve wellbeing in pwMS.


Assuntos
Esclerose Múltipla , Estudos Transversais , Depressão/epidemiologia , Fadiga/complicações , Fadiga/epidemiologia , Humanos , Esclerose Múltipla/complicações , Estudos Prospectivos , Qualidade de Vida/psicologia , Recidiva
18.
Health Expect ; 25(1): 214-222, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-34599857

RESUMO

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.


Assuntos
Esclerose Múltipla , Terapia Comportamental , Humanos , Estilo de Vida , Esclerose Múltipla/psicologia , Esclerose Múltipla/terapia , Otimismo , Inquéritos e Questionários
19.
J Pers Med ; 11(11)2021 Nov 17.
Artigo em Inglês | MEDLINE | ID: mdl-34834570

RESUMO

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.

20.
Mult Scler Relat Disord ; 56: 103307, 2021 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-34627006

RESUMO

BACKGROUND: Diet has been associated with the onset and progression of multiple sclerosis (MS). Multiple diets, varying in recommendations, have been proposed as beneficial to people with MS. The characteristics of those who follow specific diet-programs and the relationships of these diet-programs with diet quality is under-explored. METHODS: Data from the HOLISM study were analysed. Adherence to selected MS-specific diets (Ashton Embry Best Bet, McDougall, Overcoming MS (OMS), Palaeolithic, Swank, and Wahls Elimination) were each queried on 5-point Likert scales, and moderate (≥3/5) and rigorous (≥4/5) adherence defined. Sociodemographic and clinical characteristics of adherence were evaluated by log-binomial regression. Relationships of diet-program adherence with diet quality as measured by Diet Habits Questionnaire were assessed by linear and log-binomial regression, as appropriate, adjusted for age, sex, socioeconomic status (SES), education, and clinically significant fatigue. RESULTS: Forty-nine percent of participants reported at least 12-month adherence to a diet-program for their MS. Of these, 31.3% rigorously adhered to OMS, 4.9% to Swank, 1.7% to Wahls, and <1.5% to other diet-programs. Only adherence to any diet-program, OMS, Wahls, and Swank, were quantitatively assessed. Females, and participants of lower-than-average SES and longer disease duration were less adherent to any diet-program for MS, as well as those with higher disability, more clinically significant fatigue, greater depression risk, and more comorbidities. Those with higher-than-average SES were more adherent, as were those with higher physical and mental quality of life. Similar relationships were seen for OMS diet-program adherence. Adherence to Wahls diet-program was higher among those with progressive MS types and longer disease duration. No associations were found for adherence to Swank diet-program. Overall diet quality was higher among participants following any diet-program, particularly OMS and Swank, but not Wahls. CONCLUSION: Greater adherence to MS specific diets was associated with higher SES, and higher quality of life. Following any diet program was associated with higher overall diet quality, with those adhering to the OMS diet having the highest diet quality. These results may inform health professionals in providing guidance to patients regarding diet in MS.


Assuntos
Esclerose Múltipla , Estudos de Coortes , Dieta , Fadiga , Feminino , Humanos , Esclerose Múltipla/epidemiologia , Qualidade de Vida
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