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1.
Eur J Neurol ; : e16429, 2024 Aug 07.
Artigo em Inglês | MEDLINE | ID: mdl-39109838

RESUMO

BACKGROUND AND PURPOSE: Healthy lifestyle behaviour modification may improve health outcomes in people with multiple sclerosis (pwMS), but empirical evidence is needed to confirm prior study findings. We developed an online multimodal lifestyle intervention (Multiple Sclerosis Online Course) to examine the impact of lifestyle modification on health outcomes in pwMS via a randomized control trial (RCT). However, the present study specifically analyses baseline data to assess engagement with healthy lifestyles by RCT participants and cross-sectional associations with health outcomes. METHODS: Baseline engagement with six "healthy lifestyle behaviours" of the intervention course (high-quality, plant-based diet; ≥5000 IU/day vitamin D; omega-3 supplementation; ≥30 min physical activity 5 times/week; ≥30 min/week meditation; and nonsmoking) was examined. Associations between individual versus collective behaviours (individual behaviours summated) and health outcomes (quality of life [QoL]/fatigue/disability) were evaluated using multivariate modelling (linear/log-binomial/multinomial). RESULTS: At baseline, 33.7% and 30.0% of participants (n = 857) engaged in one or two healthy behaviours, respectively. In total, engagement with healthy lifestyles by participants was as follows: nonsmoking, 90.7%; omega-3 supplementation, 34.5%; vitamin D supplementation, 29.8%; physical activity, 29.4%; diet, 10.7%; and meditation, 10.5%. Individual behaviours (nonsmoking/physical activity/diet) were independently associated with better health outcomes. Engagement with multiple behaviours, especially diet and physical activity, was associated with better outcomes; engaging with ≥4 behaviours was associated with a 9.0-point higher mental QoL and a 9.5-point higher physical QoL, as well as 23% and 56% lower prevalence of fatigue and moderate disability, respectively. CONCLUSIONS: Baseline engagement with ≥4 healthy behaviours, including diet and physical activity, was associated with better health outcomes.

2.
J Med Internet Res ; 26: e58253, 2024 Aug 28.
Artigo em Inglês | MEDLINE | ID: mdl-39197163

RESUMO

BACKGROUND: Digital health interventions increase access to multiple sclerosis (MS)-related knowledge for people living with MS; however, our understanding of factors associated with engagement in web-based learning is limited. OBJECTIVE: This study aims to examine associations between participant sociodemographic, health, and lifestyle-related characteristics and the commencement and completion of the Multiple Sclerosis Online Course (MSOC) in a randomized controlled trial (RCT). METHODS: An intervention course was developed based on the Overcoming MS Program-an evidence-based lifestyle modification program for MS, and a standard care course was developed based on international MS website information. An RCT was conducted to compare the effectiveness of the intervention course versus the standard care course in improving health outcomes in people living with MS. Participant data were collected from a baseline survey. Associations between baseline participant characteristics and MSOC commencement and completion, respectively, were assessed using multivariate log-binomial regression. RESULTS: Overall, 1893 participants enrolled in the RCT, and 45.27% (n=857) completed the baseline survey: 23.5% (n=444) in the intervention course and 21.8% (n=413) in the standard care course. Of these 857 participants, 631 (73.6%) commenced the standard care course or intervention course, and 49.1% (218/444) and 54.2% (224/413) completed the intervention course and standard care course, respectively. University education, partnered relationship status, and higher mental and physical quality of life were associated with 19%, 12%, 20%, and 22% higher rates of course commencement, respectively. Clinically significant fatigue was associated with a 10% reduction in the likelihood of commencement. Strongest associations with intervention course completion included middle and older adulthood, male sex, fatigue, and preexisting adherence to a diet program, with 96%, 27%, 24%, and 19% higher rates of completion observed, respectively, whereas higher self-efficacy was associated with up to 35% lower intervention course completion. Associations with standard care course completion included practicing meditation (20% higher completion), whereas employment was associated with 22% lower completion. CONCLUSIONS: Sociodemographic and clinical factors, as well as lifestyle-related factors, were important factors in MSOC commencement and completion. These data may help guide the design and enhancement of digital health interventions tailored for people living with MS. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12621001605886; https://tinyurl.com/2vyve9p9. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1186/s12883-023-03298-0.


Assuntos
Internet , Estilo de Vida , Esclerose Múltipla , Humanos , Esclerose Múltipla/psicologia , Masculino , Feminino , Pessoa de Meia-Idade , Adulto , Educação de Pacientes como Assunto/métodos
3.
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
4.
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
5.
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
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.
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
8.
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
9.
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
10.
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
11.
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
12.
Eur J Neurol ; 28(9): 2952-2964, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-34081818

RESUMO

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.


Assuntos
Esclerose Múltipla , Fadiga/epidemiologia , Fadiga/etiologia , Estilo de Vida Saudável , Humanos , Estilo de Vida , Esclerose Múltipla/complicações , Esclerose Múltipla/epidemiologia , Probabilidade
13.
Qual Life Res ; 29(9): 2509-2527, 2020 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-32488685

RESUMO

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.


Assuntos
Estilo de Vida , Esclerose Múltipla/epidemiologia , Qualidade de Vida/psicologia , Adolescente , Adulto , Idoso , Estudos de Coortes , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla/psicologia , Fatores Socioeconômicos , Adulto Jovem
14.
BMC Neurol ; 16(1): 235, 2016 Nov 22.
Artigo em Inglês | MEDLINE | ID: mdl-27876009

RESUMO

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 and QOL suggest significant potential for secondary prevention of the known deterioration of QOL for people with MS through lifestyle risk factor modification.


Assuntos
Estilo de Vida , Esclerose Múltipla/epidemiologia , Qualidade de Vida , Fatores Socioeconômicos , Adulto , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade
15.
BMC Neurol ; 16(1): 210, 2016 Nov 04.
Artigo em Inglês | MEDLINE | ID: mdl-27814701

RESUMO

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 is potential to prevent and treat SD in PwMS by addressing depression and fatigue and their determinants. Clinicians and PwMS should be aware of SD and associated factors as part of a comprehensive preventive approach to managing MS.


Assuntos
Esclerose Múltipla/complicações , Qualidade de Vida , Disfunções Sexuais Fisiológicas/epidemiologia , Adolescente , Adulto , Estudos Transversais , Depressão/epidemiologia , Fadiga/epidemiologia , Feminino , Humanos , Estilo de Vida , Masculino , Pessoa de Meia-Idade , Prevalência , Fatores de Risco , Adulto Jovem
16.
Med J Aust ; 201(10): 607-9, 2014 Nov 17.
Artigo em Inglês | MEDLINE | ID: mdl-25390270

RESUMO

The Coroners Prevention Unit at the Coroners Court of Victoria (CCV) is a multidisciplinary team that investigates deaths referred by the state's coroners, with a view to identifying prevention opportunities. The death of a woman from acute aortic dissection (AAD) after an emergency department attendance prompted the coroner to request a roundtable meeting with emergency physicians (EPs) from Melbourne. The round table was attended by 17 EPs from Melbourne hospitals, along with representatives from the CCV. The meeting identified important clinical, system and cultural features of AAD presentation and management that might be useful in improving case detection and management, and hence outcomes. A key recommendation was that EPs teach junior staff that AAD is the "subarachnoid haemorrhage of chest pain", to change the way patients with chest pain are assessed, with an emphasis on red flags for AAD being considered at the beginning of any discussion. This innovative collaboration between the CCV and EPs may serve as a model for future interactions between the CCV and the medical profession.


Assuntos
Aneurisma da Aorta Torácica/diagnóstico , Dor no Peito/etiologia , Médicos Legistas , Medicina de Emergência , Comunicação Interdisciplinar , Idoso , Dissecção Aórtica/diagnóstico , Ruptura Aórtica , Diagnóstico Diferencial , Serviço Hospitalar de Emergência , Evolução Fatal , Feminino , Humanos , Isquemia Miocárdica/diagnóstico
17.
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
18.
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
19.
Med J Aust ; 199(6): 402-5, 2013 Sep 16.
Artigo em Inglês | MEDLINE | ID: mdl-24033213

RESUMO

OBJECTIVE: To better understand the non-reporting of reportable deaths by determining the frequency and nature of reportable deaths referred to the Coroners Court of Victoria (CCOV) by the Registry of Births, Deaths and Marriages (BDM). DESIGN AND SETTING: Review of referrals from BDM to the CCOV between 2003 and 2011 where an external cause of death was recorded on the death certificate, with detailed review for the period 1 July 2010 to 30 June 2011. MAIN OUTCOME MEASURES: Frequency and nature of deaths referred, accuracy of cause of death recorded on death certificate, and degree of change made to cause of death after investigation. RESULTS: Over 9 years, there were 4283 referrals (annual mean, 476). Of 656 deaths referred between 1 July 2010 and 30 June 2011, 320 (48.8%) were found to be reportable. Most causes of death related to injuries; less common were choking, deaths after medical procedures, poisoning and transport-related deaths. Most of the deceased were women (55.9%), were aged ≥ 80 years (80.0%), and died in hospital (68.4%). In 309 cases (96.6%), the coroner changed the cause of death after investigation, with a major change in 146 (45.6%), minor change in 160 (50.0%), and deletion of comorbidities in three (0.9%). Twenty-one cases (6.6%) were investigated further, with one proceeding to an inquest. CONCLUSIONS: Deaths referred by BDM represent a proportion of the unquantified pool of non-reported deaths. Non-reporting of potentially reportable deaths and inaccurate completion of death certificates have significant implications for the health system and community. Further education of medical practitioners about reportable deaths and death certificates is required. Doctors should report any death about which they have doubt.


Assuntos
Causas de Morte , Médicos Legistas , Documentação/estatística & dados numéricos , Prontuários Médicos/estatística & dados numéricos , Adulto , Idoso , Idoso de 80 Anos ou mais , Austrália , Atestado de Óbito , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos
20.
Prog Transplant ; 23(3): 278-89, 2013 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-23996949

RESUMO

OBJECTIVES: To determine Australian emergency department clinicians' cultural and religious barriers to organ and tissue donation (OTD). METHOD: A national cross-sectional survey of physicians and nurses working in Australian emergency departments. An online questionnaire of 133 items was delivered via e-mail. RESULTS: Responses were received from 599 of 2969 (20%) physicians and 212 of 1026 (21%) nurses. Respondents were generally representative of the colleges. Participants were from 26 cultures and 9 religious groups. Self-rated competence in OTD tasks was low for some minority groups: South American, Caribbean, and Pacific Islanders reported little competence in identifying, referring, and caring for potential donors, introducing OTD to families, and approaching distressed families. Those of Arabic, Jewish, North African, and Middle Eastern background reported low competence in referring and caring for potential donors and comforting distressed families. They reported low support for OTD after cardiac death, low familiarity with OTD processes after cardiac death, and poor familiarity with the coroner's process. Those of Southern Asian background reported low comfort in undertaking OTD processes, poor familiarity with the coroner's process, and low competence in caring for potential donors. Those of Islamic faith reported low competence in identifying potential donors, low support for OTD after cardiac death, and thought that the emergency department was an inappropriate location to identify potential donors. Those of Buddhist and Hindu faiths reported low competence in identifying potential donors. Respondent numbers for members of minority groups were low, thereby limiting the statistical accuracy of results. CONCLUSIONS: Among clinicians working in Australian emergency departments, religion and culture may be barriers to facilitating OTD in emergency departments because of the perceptions and attitudes held by particular religious and cultural groups. Improving access to education may address these differences.


Assuntos
Características Culturais , Serviço Hospitalar de Emergência , Conhecimentos, Atitudes e Prática em Saúde , Enfermeiras e Enfermeiros/psicologia , Médicos/psicologia , Religião , Obtenção de Tecidos e Órgãos , Adulto , Austrália , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários
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