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We documented reporting and rates of drop-out, adherence, and compliance from 40 randomized controlled trials (RCTs) included in our meta-analysis on safety of exercise training (ET) in MS. We adopted definitions and metrics of adherence and compliance provided by the MoXFo adherence group. Drop-out was reported in 100% of the RCTs and approximated 10% for intervention and control conditions. Adherence and compliance were reported in approximately 50% and 10% of the RCTs, respectively, and approximated 80% and 70%, respectively. Standardized metrics for reporting adherence and compliance are important in future RCTs for understanding the impact on outcomes and translation of research evidence into practice.
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Ejercicio Físico , Esclerosis Múltiple , Humanos , Ensayos Clínicos Controlados Aleatorios como Asunto , Terapia por Ejercicio , Esclerosis Múltiple/terapiaRESUMEN
OBJECTIVES: To conduct a systematic review of clinical guidelines, guidance documents and consensus statements regarding physical activity (PA) promotion by healthcare providers (HCPs) to people with multiple sclerosis (MS), and to assess the methodological quality, and actionability of the recommendations. The protocol was registered with Prospero (CRD42023495137). DATA SOURCES: Clinical guidelines, guidance documents and consensus statements (hereafter guidelines) published in English between 2013-2023 were identified through extensive grey and scientific literature searches, and through contacting relevant HCP organisations in English speaking countries. STUDY SELECTION: Two researchers independently screened titles and abstracts of the 939 identified records and included 19 guidelines which were developed for PA promotion as part of MS clinical management, and for which the target user was HCPs. DATA EXTRACTION: Two researchers independently extracted data and appraised the methodological quality using the Appraisal of Guidelines for Research and Evaluation (AGREE-II). Behavioural actionability was analysed using the Actor, Action, Context, Target and Time (AACTT) framework. DATA SYNTHESIS: Seventy-eight recommendations from 19 guidelines were identified. Two guidelines had high methodological quality. Actor, Action, Context, Target and Time was clearly specified in 57 (73%), 45 (58%), 0 (0%), 51 (65%), and 24 (31%) of the 78 recommendations, respectively. Guidelines with the highest methodological quality did not always score well on actionability, and vice-versa. CONCLUSIONS: Our comprehensive analysis of guidelines for PA promotion in MS reveals the need for more actionable recommendations and better reporting of guideline development, which has the potential to improve the translation of evidence into practice.
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There are reports of poor working conditions for early and mid-career academics (EMCAs) in universities, however, empirical data using validated tools are scarce. We conducted an online, cross-sectional survey using validated tools to assess workplace satisfaction, exposure to workplace abuse, and mental health. Participants included employees of medical and health faculties of two of the largest Australian universities, surveyed between October 2020 and January 2021.Overall, 284 participants responded. Many reported job insecurity: half (50.7%) working on contracts with less than one remaining year. Workloads were considerable, with 89.5% of participants working overtime and 54.8% reporting burnout. Workplace abuse in the forms of bullying (46.6%), sexual harassment (25.3%), sexism (49.8%) and racism (22.5%) were commonly reported. Clinically significant symptoms of depression (28.0%), anxiety (21.7%) and suicidal ideation or self-harm (13.6%) were reported; with a higher prevalence among those working more overtime, and those exposed to workplace abuse. Priorities include providing a stable and safe workplace, increasing accountability and transparency in addressing workplace abuse, and supporting professional development.In summary, EMCAs in our study were commonly exposed to precarious employment conditions and workplace abuse. Our findings provide empirical evidence on where universities and funding bodies should direct resources and change organisational risk factors, to improve workplace culture.
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Cultura Organizacional , Lugar de Trabajo , Humanos , Estudios Transversales , Masculino , Femenino , Adulto , Australia/epidemiología , Lugar de Trabajo/psicología , Lugar de Trabajo/estadística & datos numéricos , Persona de Mediana Edad , Universidades , Salud Mental/estadística & datos numéricos , Acoso Escolar/psicología , Acoso Escolar/estadística & datos numéricos , Encuestas y Cuestionarios , Agotamiento Profesional/epidemiología , Agotamiento Profesional/psicología , Satisfacción en el Trabajo , Acoso Sexual/estadística & datos numéricos , Acoso Sexual/psicologíaRESUMEN
We know very little about exercise adherence, compliance and sustainability in multiple sclerosis (MS), yet adherence is seemingly important for yielding immediate and sustained health benefits. This paper is focused on exercise adherence, compliance and sustainability in the context of informing research and practice involving MS. This focus is critical for clarifying terminology for future research and providing a roadmap guiding clinical research and practice. Our objective was accomplished through a narrative summary of the literature by a panel of experts on exercise adherence from the Moving Exercise Research in Multiple Sclerosis Forward (MoXFo) initiative and a concluding summary of the state of the literature and future research directions. The panel of experts identified three overall themes (Background and Importance; Understanding and Promoting Exercise Adherence, Compliance and Sustainability and Challenges to Exercise Adherence, Compliance and Sustainability) that represented a categorization of nine subthemes. These overall themes and subthemes formed the basis of our recommendations regarding future research broadly involving exercise adherence in MS. Overall, there is limited evidence on rates and determinants of exercise adherence and compliance in MS, and little is known about techniques and interventions for immediate and long-term exercise behaviour change.
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Esclerosis Múltiple , Humanos , Esclerosis Múltiple/terapia , Ejercicio Físico , Terapia por Ejercicio/métodosRESUMEN
BACKGROUND: A review of the safety profile of exercise training in multiple sclerosis (MS) has not been conducted since 2013. OBJECTIVE: We undertook a systematic review and meta-analysis of randomised controlled trials (RCTs) of exercise training published since 2013 and quantified estimated population risks of clinical relapse, adverse events (AE) and serious adverse event (SAE). METHODS: Articles reporting safety outcomes from comparisons of exercise training with non-exercise among persons with MS were identified. The risk of bias was established from study's internal validity assessed using Physiotherapy Evidence Database (PEDro). Rates and estimated mean population relative risks (RRs; 95% confidence interval (CI)) of safety outcomes were calculated, and random-effects meta-analysis estimated the mean RR. RESULTS: Forty-six interventions from 40 RCTs (N = 1780) yielded 46, 40 and 39 effects for relapse, AE, adverse effects and SAE, respectively. The mean population RRs ((95% CI), p-value) for relapse, AE and SAE were 0.95 ((0.61, 1.48), p = 0.82), 1.40 ((0.90, 2.19), p = 0.14) and 1.05 ((0.62, 1.80), p = 0.85), respectively. No significant heterogeneity is observed for any outcome. CONCLUSION: In studies that reported safety outcomes, there was no higher risk of relapse, AE, adverse effects or SAE for exercise training than the comparator. Exercise training may be promoted as safe and beneficial to persons with MS.
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Ejercicio Físico , Esclerosis Múltiple , Humanos , Terapia por Ejercicio/efectos adversos , Enfermedad Crónica , Esclerosis Múltiple/terapia , RecurrenciaRESUMEN
Management of multiple sclerosis (MS) may comprise clinical interventions and self-management strategies, including complementary therapies and modifiable lifestyle factors such as exercise and smoking cessation. Lifestyle modifications and complementary therapies with proven safety and efficacy are essential as part of best-practice MS management, especially when faced with limited access to healthcare services. However, it is unclear to what extent MS clinical practice guidelines and consensus statements address these strategies. A systematic review was conducted, wherein MEDLINE, EMBASE, PsycINFO, CINAHL, Scopus, Web of Science, guideline databases and developer sites were searched for guidelines and consensus statements that addressed lifestyle modifications and complementary therapies of interest. Two researchers independently screened articles, extracted data and assessed guideline quality using the Appraisal of Guidelines for Research and Evaluation version II. Thirty-one guidelines and consensus statements were included. Quality was high for 'clarity of presentation' (77%) and 'scope and purpose' (73%), moderate for 'stakeholder development' (56%), 'rigour of development' (48%) and 'editorial independence' (47%), and low for 'applicability' (29%). Two guidelines, related to physical activity and exercise, mindfulness, smoking cessation, and vitamin D and polyunsaturated fatty acid supplementation, scored high in all domains. These guidelines were two of only four guidelines intended for use by people with MS. High-quality guidelines and consensus statements to guide lifestyle modifications and complementary therapies in MS management are limited. Our findings indicate the need for more guidelines intended for use by people with MS, and a further focus on implementation resources.
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Terapias Complementarias , Esclerosis Múltiple , Cese del Hábito de Fumar , Consenso , Humanos , Estilo de Vida , Esclerosis Múltiple/terapiaRESUMEN
Tobacco smoking is a well-established risk factor for multiple sclerosis (MS) onset, progression and poor health outcomes in people with MS. Despite smoking being a modifiable risk factor, no research has been undertaken to understand how, or who is best placed, to assess or understand smoking behaviour in people with MS, or how healthcare professionals can best assist people with MS to quit. People with MS may have unique motivators to continue smoking, or unique barriers to smoking cessation, that are not addressed by existing cessation tools. Research is urgently needed in this area if the aim is to maximise health outcomes for all people with MS.
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Esclerosis Múltiple/terapia , Cese del Hábito de Fumar , Fumar , Humanos , Esclerosis Múltiple/epidemiología , Esclerosis Múltiple/etiología , Factores de Riesgo , Fumar/efectos adversos , Fumar/epidemiología , Fumar/terapia , Cese del Hábito de Fumar/métodos , Cese del Hábito de Fumar/estadística & datos numéricosRESUMEN
Purpose This prospective international study aimed to assess the changes in employment, and predictors thereof, and associated change in mental health quality of life in people with multiple sclerosis (MS). Methods People with MS were recruited online through social media, forums and newsletters to complete an online English-language survey in 2012 and again in 2015, to assess changes in employment and clinical characteristics. Results 1276 people with MS of working age were included of whom 35.9% were employed full time, 25.6% part-time, 3.1% were unemployed and seeking employment, 19.7% were retired due to disability and 15.7% were not in the labour force. Part/full time employment decreased from 61.4 to 57.1% of the sample 2.5 years later, and 25.5% experienced some change in employment status. Lower level of education and higher level of disability at baseline predicted loss of employment at follow-up. 62.0% of the sample indicated that MS impacted on employment over their lifetime, associated with a lower level of education and progressive MS at time of diagnosis. Retiring due to disability was predictive of a decreased mental health related QOL score. Conclusion Employment status was negatively impacted by MS for most participants. We showed for the first time that employment loss was prospectively associated with poorer mental health related quality of life. Employment support including vocational services, reasonable flexibility in the workplace, and legal protection against discrimination should be widely available to assist people with MS, especially for those with progressive onset MS, higher disability and lower levels of education who are at higher risk of employment loss.
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Personas con Discapacidad/psicología , Discriminación en Psicología , Empleo/psicología , Trastornos Mentales/psicología , Esclerosis Múltiple/psicología , Calidad de Vida , Desempleo/estadística & datos numéricos , Adulto , Empleo/estadística & datos numéricos , Femenino , Humanos , Masculino , Trastornos Mentales/complicaciones , Persona de Mediana Edad , Esclerosis Múltiple/complicaciones , Estudios Prospectivos , Encuestas y CuestionariosRESUMEN
OBJECTIVES: Modifiable lifestyle factors are implicated in multiple sclerosis (MS) symptoms but their role in mood is unclear. This study aimed to investigate associations between lifestyle and depression and anxiety in Australian participants with MS. MATERIALS AND METHODS: Self-reported data from the Australian Multiple Sclerosis Longitudinal Study included the Hospital Anxiety and Depression Scale (HADS) and lifestyle measurements from 1500 participants. SNAP score (range 0-5) was the sum of non-smoking, sufficient fruit/vegetable intake, non-hazardous alcohol consumption, sufficient physical activity and healthy BMI. Analyses by log-binomial and linear regression were adjusted for confounding. RESULTS: Symptoms of depression and anxiety were prevalent in 27% and 40%, respectively; 20% had both. Mean SNAP score was 2.7/5; only 3% met all healthy lifestyle recommendations. Only 10% reported adequate fruit/vegetable intake, and 22% reported a combination of unhealthy BMI, inadequate physical activity and inadequate nutrition. A healthier SNAP score was associated with lower depression prevalence (adjusted prevalence ratio 0.83 [95% CI 0.75, 0.92] per unit increase) and depression severity (adjusted ß-0.44 [95% CI -0.64, -0.24]), but not with anxiety. CONCLUSIONS: Modifiable lifestyle factors are associated with lower frequency and severity of depression, but not anxiety, in Australian people with multiple sclerosis. The associations between a healthier SNAP score and lower depression are likely bi-directional. SNAP risk factor prevalence and co-occurrence, especially inadequate nutrition and low physical activity, were high among Australians with MS.
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Ansiedad/epidemiología , Depresión/epidemiología , Esclerosis Múltiple/psicología , Adulto , Afecto , Ejercicio Físico , Femenino , Humanos , Estilo de Vida , Masculino , Persona de Mediana Edad , Esclerosis Múltiple/complicaciones , Esclerosis Múltiple/epidemiología , Factores de RiesgoRESUMEN
OBJECTIVE: To systematically review the evidence of the effect of exercise compared with passive control on pain in people with multiple sclerosis. DATA SOURCE AND STUDY SELECTION: Five electronic databases were searched for randomized controlled trials published up to March 2017 that recruited people with multiple sclerosis where exercise was the intervention and pain was an outcome (PROSPERO registration number CRD42017060489). STATISTICAL ANALYSIS: A random-effects meta-analysis was conducted to estimate the standardized mean difference of the effect of exercise on pain between treatment and control groups. We assessed risk of bias, fitted meta-regression models to explore heterogeneity between studies, and assessed small study effects. DATA SYNTHESIS: Ten studies met the inclusion criteria (total sample size=389), and all studies were at high risk of bias. We found that exercise interventions were associated with less pain compared with passive control groups (standardized mean difference=-.46; 95% CI, -.92 to .00). There was high between-study heterogeneity (I2=77.0%), which was not explained by the prespecified study characteristics. There was also some evidence of small study effects. CONCLUSION: This is the first systematic review of the effect of exercise interventions on pain in people with multiple sclerosis, a chronic neurological disorder that affects 2.5 million people. We found some evidence that exercise compared with passive control alleviates pain in this population, but there were limitations in reporting and study quality with high risk of bias of individual studies and heterogeneity between studies.
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Dolor Crónico/rehabilitación , Terapia por Ejercicio/métodos , Esclerosis Múltiple/complicaciones , Manejo del Dolor/métodos , Adulto , Dolor Crónico/etiología , Evaluación de la Discapacidad , Femenino , Humanos , Masculino , Persona de Mediana Edad , Dimensión del Dolor , Calidad de Vida , Ensayos Clínicos Controlados Aleatorios como Asunto , Análisis de Regresión , Resultado del TratamientoRESUMEN
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.
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Estilo de Vida , Esclerosis Múltiple/epidemiología , Calidad de Vida , Factores Socioeconómicos , Adulto , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana EdadRESUMEN
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.
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Esclerosis Múltiple/complicaciones , Calidad de Vida , Disfunciones Sexuales Fisiológicas/epidemiología , Adolescente , Adulto , Estudios Transversales , Depresión/epidemiología , Fatiga/epidemiología , Femenino , Humanos , Estilo de Vida , Masculino , Persona de Mediana Edad , Prevalencia , Factores de Riesgo , Adulto JovenRESUMEN
PURPOSE: People with cancer attend emergency departments (EDs) for many reasons. Improved understanding of the specific needs of these patients may assist in optimizing health service delivery. ED presentation and hospital utilization characteristics were explored for people with cancer and compared with those patients without cancer. METHODS: This descriptive, retrospective, multicentre cohort study used hospital administrative data. Descriptive and inferential statistics were used to summarise and compare ED presentation characteristics amongst cancer and non-cancer groups. Predictive analyses were used to identify ED presentation features predictive of hospital admission for cancer patients. Outcomes of interest were level of acuity, ED and inpatient length of stay, re-presentation rates and admission rates amongst cancer patients and non-cancer patients. RESULTS: ED (529,377) presentations occurred over the 36 months, of which 2.4% (n = 12,489) were cancer-related. Compared with all other attendances, cancer-related attendances had a higher level of acuity, requiring longer management time and length of stay in ED. Re-presentation rates for people with cancer were nearly double those of others (64 vs 33%, p < 0.001), with twice the rate of hospital admission (90 vs 46%, p < 0.001), longer inpatient length of stay (5.6 vs 2.8 days, p < 0.001) and had higher inpatient mortality (7.9 vs 1.0%, p < 0.001). Acuity and arriving by ambulance were significant predictors of hospital admission, with cancer-related attendances having ten times the odds of admission compared to other attendances (OR = 10.4, 95% CI 9.8-11.1). CONCLUSIONS: ED presentations by people with cancer represent a more urgent, complex caseload frequently requiring hospital admission when compared to other presentations, suggesting that for optimal cancer care, close collaboration and integration of oncology, palliative care and emergency medicine providers are needed to improve pathways of care.
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Servicio de Urgencia en Hospital/estadística & datos numéricos , Hospitalización/estadística & datos numéricos , Neoplasias/terapia , Adulto , Anciano , Anciano de 80 o más Años , Estudios de Cohortes , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/mortalidad , Estudios Retrospectivos , Resultado del Tratamiento , Victoria , Adulto JovenRESUMEN
BACKGROUND: A growing evidence base implicates vitamin D, sun exposure and latitude in the aetiology of multiple sclerosis (MS), however there are less data on the associations of these variables with disease outcomes. METHODS: We undertook a cross-sectional survey of over 2000 people with MS recruited through internet platforms, seeking self-reported data on geographical location, intentional sun exposure for health, and supplementation with vitamin D, among other lifestyle variables. We also requested data on health-related quality of life (MSQOL-54), self-reported doctor-diagnosed relapse rate, and disability (Patient Determined Disease Steps). Bivariate and multivariate analyses were used for comparisons, including multiple linear regression modeling. RESULTS: Of 2301 participants, 82.3 % were female, median age was 45 years (IQR 38-53 years), with a median time since diagnosis of 6 years (IQR 3-12 years), the majority (61.6 %) having relapsing-remitting MS. Nearly two-thirds (64.6 %) lived in the Northern hemisphere, mostly in developed countries. Most (66.8 %) reported deliberate sun exposure to raise their vitamin D level, and the vast majority (81.8 %) took vitamin D supplements, mostly 2000-5000 IU a day on average. Unadjusted regression modeling incorporating deliberate sun exposure, latitude and vitamin D supplementation showed strong associations of sun exposure with HRQOL which disappeared when controlling for gender, age, disability, physical activity, and fish consumption. In contrast, associations between vitamin D supplementation and HRQOL were maintained adjusting for these variables, with a dose-response effect. Only latitude had significant adjusted associations with disability, with an increase of latitude by one degree (further from the equator) predicting increased odds of moderate disability (OR 1.02 (95 % CI 1.01-1.04)) or high disability (OR 1.03 (95 % CI 1.01-1.05)) compared to no/mild disability. Similarly, latitude was related to relapse rate, with increase in latitude of 1 degree associated with increased odds of having more relapses over the previous year (1.01 (1.00-1.02)). CONCLUSIONS: We detected significant associations between latitude, deliberate sun exposure and vitamin D supplementation and health outcomes of this large group of people with MS. Vitamin D is likely to have a key role in these associations and its role in the health outcomes of people with MS urgently requires further study.
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Suplementos Dietéticos , Esclerosis Múltiple Recurrente-Remitente/fisiopatología , Calidad de Vida , Luz Solar , Vitamina D/uso terapéutico , Vitaminas/uso terapéutico , Actividades Cotidianas , Adulto , Estudios de Cohortes , Estudios Transversales , Femenino , Geografía , Estado de Salud , Humanos , Estilo de Vida , Modelos Lineales , Masculino , Persona de Mediana Edad , Esclerosis Múltiple/fisiopatología , Factores Protectores , Recurrencia , Factores de Riesgo , Índice de Severidad de la EnfermedadRESUMEN
OBJECTIVES: To explore the association between dietary factors including fat, fruit and vegetable intake, dairy and meat consumption, and health-related quality of life (HRQOL), disability and relapse rate in a large international sample of people with multiple sclerosis (MS). METHODS: Participants with MS were recruited to the study via Web 2.0 platforms and completed a comprehensive survey measuring demographic and clinical characteristics, HRQOL, disability, relapse rate, and the Diet Habits Questionnaire (DHQ). RESULTS: Of 2469 participants with confirmed MS, 2087 (84.5%) provided complete data on their dietary habits (DHQ total score). Multivariate regression models demonstrated that every 10-point increase on the DHQ total score was associated with nearly a six-point and five-point increase in physical and mental HRQOL, respectively, and 30.0% reduced likelihood of a higher level of disability. After controlling for age and gender, and the other dietary covariates, 'healthy' consumption of fruit and vegetables and dietary fat predicted better quality of life and less likelihood of higher disability when compared to respondents with a 'poor' diet. For those with relapsing-remitting MS, the DHQ total significantly predicted a lower relapse rate and reduced odds of increasing disease activity, but the model fit was poor and the predicted change only marginal. DISCUSSION: This study supports significant associations of healthy dietary habits with better physical and mental HRQOL and a lower level of disability. Further research is urgently required to explore these associations including randomized controlled trials of dietary modification for people with MS.
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Dieta , Evaluación de la Discapacidad , Conducta Alimentaria , Esclerosis Múltiple/complicaciones , Esclerosis Múltiple/psicología , Calidad de Vida/psicología , Adulto , Enfermedad Crónica , Progresión de la Enfermedad , Femenino , Estado de Salud , Humanos , Internacionalidad , Estilo de Vida , Masculino , Persona de Mediana Edad , Recurrencia , Factores de Riesgo , Encuestas y CuestionariosRESUMEN
BACKGROUND: The understanding of what palliative care is, and which patients may benefit from palliative care, has important implications for optimal patient care in all areas of health provision. AIM: To explore the understanding of palliative care by healthcare professionals caring for patients with advanced cancer attending emergency departments. DESIGN: Qualitative study, with two phases: the first, a series of focus groups with healthcare professionals from various disciplines and settings caring for patients with advanced cancer presenting to emergency departments; the second, semi-structured telephone interviews with emergency healthcare professionals across Australian States and Territories, including outside metropolitan centers. The data were audio-recorded and transcribed, with analysis undertaken using a qualitative thematic analysis. SETTING/PARTICIPANTS: Saturation of themes was reached after 8 focus groups (22 emergency nurses, 21 emergency physicians, 6 oncologists, 6 hospital palliative care clinicians, and 28 community palliative care clinicians) and 11 telephone interviews (8 emergency physicians and 3 emergency nurses), a total of 94 participants. RESULTS: The overarching theme was that healthcare professionals held contradictory understandings of palliative care and its application in the emergency department; subthemes highlighted these inconsistencies when the term "palliative" is used, in understandings of and engagement with palliative care services and in perceptions about the practical utility of palliative care. CONCLUSION: There are entrenched contradictions and tensions surrounding the term "palliative care"; confronting these is likely to require more than re-branding, and will promote better care for this vulnerable patient group in the emergency department.
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Actitud del Personal de Salud , Servicio de Urgencia en Hospital , Cuidados Paliativos , Adulto , Australia , Comprensión , Femenino , Grupos Focales , Conocimientos, Actitudes y Práctica en Salud , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/terapia , Relaciones Profesional-Paciente , Investigación CualitativaRESUMEN
There is increasing interest in patient-centered approaches to chronic disease management and prevention. For people with multiple sclerosis (PwMS), patient empowerment plays a role in improving a range of health-related outcomes. This study aimed to compare health-related quality of life (HRQOL), fatigue, and depression risk between people who have and have not attended a week-long physician-led residential educational retreat or accessed other self-help resources (a book and online content) that foster patient empowerment including the adoption of healthy lifestyle behaviors. PwMS were recruited to the study using online platforms and asked to complete a comprehensive online survey. Data from 2,233 respondents were analysed. Bivariate results indicated that PwMS who had attended a retreat (n = 247), read the associated book (n = 1,167) or regularly visited online sites promoting lifestyle modification (n = 795), had better HRQOL and lower rates of depression and fatigue than those who had not. The depression risk among retreat attendees (8.6 %) was around half that of the whole sample. Regression analysis showed that, controlling for age and gender, compared to the highest level of engagement, no engagement with the resources was associated with nearly threefold higher odds of clinically significant fatigue, tenfold higher odds of depression risk, and physical and mental HRQOL scores 19.5 and 15.6 points lower, respectively. These results are congruent with previously reported post-retreat improvements in HRQOL, and strongly support a role for patient engagement in resources promoting lifestyle modification. Physicians should encourage more active involvement of PwMS in their own health care.
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Estilo de Vida , Esclerosis Múltiple/terapia , Evaluación del Resultado de la Atención al Paciente , Calidad de Vida , Adolescente , Adulto , Enfermedad Crónica , Fatiga/complicaciones , Fatiga/terapia , Femenino , Estado de Salud , Humanos , Masculino , Persona de Mediana Edad , Esclerosis Múltiple/complicaciones , Encuestas y Cuestionarios , Resultado del Tratamiento , Adulto JovenRESUMEN
BACKGROUND: Multiple Sclerosis (MS) is a common neurodegenerative disease, which often has a devastating effect on physical and emotional wellbeing of people with MS (PwMS). Several studies have shown positive effects of physical activity (PA) on disability, health related quality of life (HRQOL), and other outcomes. However, many studies include only people with mild disability making it difficult to generalize findings to those with moderate or severe disability. This study investigated the associations between PA and HRQOL, relapse rate (RR), disability, and demographic variables in PwMS with varying disability. METHODS: Through online platforms this large international survey recruited 2232 participants with MS who completed items regarding PA, MS and other health characteristics. RESULTS: PwMS who were younger (p < .001), male (p = 0.006), and with lower body mass index (BMI) (p < .001) undertook more PA, which was associated with decreased disability (p < 0.001) and increased HRQOL measures (all p < 0.001). For the subsample of people with relapsing-remitting MS, PA was associated with a decreased RR (p = 0.009). Regression analyses showed that increased PA predicted clinically significant improvements in HRQOL while controlling for level of disability, age and gender. More specifically, increasing from low to moderate and to high PA increased estimated mean physical health composite from 47.7 to 56.0 to 59.9 respectively (25.6% change), mental health composite from 60.6 to 67.0 to 68.8 (13.5% change), energy subscale from 35.9 to 44.5 to 49.8 (38.7% change), social function subscale from 57.8 to 66.1 to 68.4 (18.3% change), and overall QOL subscale from 58.5 to 64.5 to 67.7 (15.7% change). CONCLUSIONS: For PwMS, regardless of disability level, increased PA is related to better HRQOL in terms of energy, social functioning, mental and physical health. These are important findings that should be taken into consideration by clinicians treating PwMS.
Asunto(s)
Actividad Motora , Esclerosis Múltiple/complicaciones , Esclerosis Múltiple/psicología , Calidad de Vida , Adulto , Recolección de Datos , Evaluación de la Discapacidad , Femenino , Humanos , Masculino , Persona de Mediana EdadRESUMEN
BACKGROUND: Depression is the most common co-morbidity for people with Multiple Sclerosis (MS); irrespective of disease severity, depression has the greatest impact on quality of life. An emerging paradigm in the treatment of depression is lifestyle medicine. There is significant potential to prevent and treat depression through modification of lifestyle risk factors for people with MS. This study sought to understand the association between lifestyle risk factors, medication and depression risk through the analysis of self-reported data from a large international sample of people with MS. METHODS: This cross-sectional analysis recruited a total of 2459 participants via Web 2.0 platforms. Survey data included socio-demographics; a range of lifestyle risk factors; medication; disease variables and depression risk using the Patient Health Questionnaire-2 (PHQ-2). RESULTS: In total approximately one fifth (19.3%) of our sample screened positive for depression (PHQ-2 score ≥3). Several demographic factors were significantly associated with this depression risk in bivariate analysis. Regression analyses showed that poor diet, low levels of exercise, obesity, smoking, marked social isolation and taking interferon were associated with greater depression risk. Participants who supplemented with omega 3s, particularly flaxseed oil, had frequent fish consumption, supplemented with vitamin D, meditated, and had moderate alcohol consumption had significantly reduced depression risk. CONCLUSIONS: This study demonstrates a significant association between modifiable lifestyle factors and depression risk. Planned longitudinal follow up may clarify causality. Clinicians and people with MS should be aware of the wide range of modifiable lifestyle factors that may reduce depression risk as part of a comprehensive secondary and tertiary preventive medical approach to managing MS.