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1.
BMC Public Health ; 24(1): 1122, 2024 Apr 23.
Article in English | MEDLINE | ID: mdl-38654184

ABSTRACT

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.


Subject(s)
Organizational Culture , Workplace , Humans , Cross-Sectional Studies , Male , Female , Adult , Australia/epidemiology , Workplace/psychology , Workplace/statistics & numerical data , Middle Aged , Universities , Mental Health/statistics & numerical data , Bullying/psychology , Bullying/statistics & numerical data , Surveys and Questionnaires , Burnout, Professional/epidemiology , Burnout, Professional/psychology , Job Satisfaction , Sexual Harassment/statistics & numerical data , Sexual Harassment/psychology
2.
Mult Scler ; 30(4-5): 605-611, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38333909

ABSTRACT

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.


Subject(s)
Exercise , Multiple Sclerosis , Humans , Randomized Controlled Trials as Topic , Exercise Therapy , Multiple Sclerosis/therapy
3.
Mult Scler ; 29(13): 1595-1603, 2023 Nov.
Article in English | MEDLINE | ID: mdl-37880951

ABSTRACT

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.


Subject(s)
Multiple Sclerosis , Humans , Multiple Sclerosis/therapy , Exercise , Exercise Therapy/methods
4.
Mult Scler ; 29(13): 1604-1631, 2023 Nov.
Article in English | MEDLINE | ID: mdl-37880997

ABSTRACT

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.


Subject(s)
Exercise , Multiple Sclerosis , Humans , Exercise Therapy/adverse effects , Chronic Disease , Multiple Sclerosis/therapy , Recurrence
5.
Mult Scler Relat Disord ; 71: 104531, 2023 Mar.
Article in English | MEDLINE | ID: mdl-36709575

ABSTRACT

BACKGROUND: In 2019 and 2020, over 17 million hectares of Australia burned, and half of the Australian population was affected by toxic bushfire smoke. Then in 2020, restrictions designed to curtail the spread of COVID-19 resulted in significant changes to healthcare access. There is no Australian emergency management standard for persons with disabilities, including those with multiple sclerosis (MS). Persons with MS often require multidisciplinary and complex care, with continuity of treatment essential to prevent disease progression. OBJECTIVE: To identify limitations in access to healthcare from the perspective of persons with MS as well as MS care providers during recent crises and make recommendations for policy to improve MS healthcare access during a crisis. METHOD: In mid-2020, we undertook online surveys and interviews with persons with MS, their carers, healthcare professionals and staff of MS service providers (i.e., care providers). We used descriptive analysis for quantitative, and a general inductive approach for qualitative data. RESULTS: One-hundred and thirteen persons with MS and a total of 63 MS care providers, who were close carers, healthcare professionals and service providers provided survey responses. For participants with MS, limited access to general practitioners and medical tests were of the most significant concern during the bushfires and the pandemic. In contrast, during the pandemic accessing physiotherapy was another top concern. Twenty-nine people participated in in-depth interviews, revealing that reduced healthcare access during the bushfire and the pandemic caused concern. The use of telehealth received both positive and negative reviews. All participants indicated a need for preparation and planning for healthcare access before a crisis. Persons with MS recommended centralised information sources, prioritised access to healthcare and increased levels of MS nurses and other allied healthcare. Care providers recommended centralised information sources, more nursing and mental health care access, and increased opportunities for multidisciplinary telehealth delivery. CONCLUSIONS: We recommend the involvement of the MS community in creating and designing disaster preparation plans, which should cater to a range of disaster types, to improve disaster preparedness in a community that is vulnerable to increasingly common community crises.


Subject(s)
COVID-19 , Multiple Sclerosis , Humans , Multiple Sclerosis/therapy , Australia , Health Personnel , Health Services Accessibility
6.
Disabil Rehabil ; 45(12): 1969-1974, 2023 06.
Article in English | MEDLINE | ID: mdl-35666818

ABSTRACT

PURPOSE: Physical activity (PA) participation offers many benefits for persons with multiple sclerosis (MS). Persons with MS are significantly less active than the general population; however, there is insufficient evidence regarding the association between geographical remoteness and PA participation in persons with MS. We identify PA levels across levels of rurality in an Australian MS population. MATERIALS AND METHODS: The Australian MS Longitudinal Study collects regular survey data from persons with MS in Australia, including demographic, clinical, and health behavioural data. Physical activity engagement was identified with the International Physical Activity Questionnaire-short form and geographical remoteness was identified from participants' postcode using the Access and Remoteness Index for Australia. Hurdle regression analysis examined the relationship between remoteness and PA participation, and level of PA, after controlling for confounding. RESULTS: Data from 1260 respondents showed that 24% of persons with MS did not participate in any PA. Remoteness was not associated with the participation in any PA (OR 1.04; 89% highest density probability interval (HDPI) estimate 0.88, 1.22). Amongst those with any PA (n = 960), those living in more remote areas had, on average, higher levels of PA (RR 1.21; 89% HDPI estimate 1.11, 1.34). CONCLUSIONS: Physical activity promotion does not need to differ based on geographical location. Implications for rehabilitationAlmost one quarter of persons with MS in our study recorded no participation in any physical activity (PA).Healthcare practitioners are encouraged to include the promotion of PA as part of MS management.Physical activity participation is similar for persons with MS across different geographical locations.Physical activity promotion does not need to differ based on geographical location.


Subject(s)
Multiple Sclerosis , Humans , Australia , Exercise , Longitudinal Studies , Rural Population
7.
Disabil Rehabil ; 45(4): 630-643, 2023 Feb.
Article in English | MEDLINE | ID: mdl-35166613

ABSTRACT

PURPOSE: The Australian multiple sclerosis (MS) community experienced two recent major crises, widespread bushfires and the COVID 19 pandemic. We aimed to understand the needs of persons with MS during times of crisis. MATERIALS AND METHODS: A consumer-directed mixed-method study. We included an online survey, semi-structured interviews, and a workshop with persons with MS, carers, healthcare professionals, and disability advocates. Data were collected via: (1) 176 people completing online surveys to identify crisis concerns and communications, (2) 29 people completing online interviews on bushfire and pandemic impact, and (3) 13 people participating in a crises-priorities workshop. Descriptive data were calculated for survey response, and a general inductive analytical approach was taken with interview and workshop responses. RESULTS: The most significant concerns were bushfire smoke exposure and disease-modifying-medication and susceptibility to COVID-19 (66% and 63% mean concern score, respectively). Interviews indicated crises experiences from the bushfires, and the pandemic overlapped respective of changes in mood and symptom stability. For bushfires, a need for future preparations, and for the pandemic, the benefits of social restrictions, disclosing personal health information and increased care burden were important. CONCLUSIONS: Multiple crises challenged the MS community but offered lessons for healthcare in future crises. Continued progress in centralised crisis information, with considered use of telehealth and rural healthcare support, is needed.Implications for rehabilitationThe MS community showed high concerns for the effect of toxic smoke from the 2019/2020 Australian bushfires and, separately, for the disease-modifying-medication and susceptibility to COVID-19.The MS community placed priority on a crisis management plan for individuals.Reduced social activity due to restrictions was beneficial for MS symptom self-awareness and may help overall fatigue management.Healthcare system preparation must prepare to alleviate increased carer workload at times of crisis.


Subject(s)
COVID-19 , Multiple Sclerosis , Humans , Pandemics , Australia , Smoke
8.
Nat Rev Neurol ; 18(12): 723-734, 2022 12.
Article in English | MEDLINE | ID: mdl-36369488

ABSTRACT

Social determinants of health are the conditions in which people are born, grow, live, work and age. These circumstances are the non-medical factors that influence health outcomes. Evidence indicates that health behaviours, comorbidities and disease-modifying therapies all contribute to multiple sclerosis (MS) outcomes; however, our knowledge of the effects of social determinants - that is, the 'risks of risks' - on health has not yet changed our approach to MS. Assessing and addressing social determinants of health could fundamentally improve health and health care in MS; this approach has already been successful in improving outcomes in other chronic diseases. In this narrative Review, we identify and discuss the body of evidence supporting an effect of many social determinants of health, including racial background, employment and social support, on MS outcomes. It must be noted that many of the published studies were subject to bias, and screening tools and/or practical interventions that address these social determinants are, for the most part, lacking. The existing work does not fully explore the potential bidirectional and complex relationships between social determinants of health and MS, and the interpretation of findings is complicated by the interactions and intersections among many of the identified determinants. On the basis of the reviewed literature, we consider that, if effective interventions targeting social determinants of health were available, they could have substantial effects on MS outcomes. Therefore, funding for and focused design of studies to evaluate and address social determinants of health are urgently needed.


Subject(s)
Multiple Sclerosis , Humans , Multiple Sclerosis/epidemiology , Multiple Sclerosis/therapy , Social Determinants of Health , Social Support
9.
BMJ Open ; 12(7): e059637, 2022 07 29.
Article in English | MEDLINE | ID: mdl-35906060

ABSTRACT

OBJECTIVES: To assess smoking habits, nicotine use, exposure to passive smoking, awareness of associated harms, and experiences with and preferences for smoking cessation support among people with multiple sclerosis (MS). DESIGN: Online survey, convenience sampling. SETTING: Community setting, Australia. PARTICIPANTS: Adults living in Australia with probable or diagnosed MS were recruited via social media and newsletters to participate in 2020. RESULTS: Of the 284 participants in our convenience sample, 25.7% were current smokers (n=73) and 38.0% were former smokers (n=108). Awareness of the harms of smoking on MS onset (n=68, 24.3%) and progression (n=116, 41.6%) was low. Almost a quarter (n=67, 23.8%) of participants were regularly exposed to passive smoke, and awareness of associated harm was also low (n=47, 16.8%). Among current smokers, 76.1% (n=54) had tried quitting and 73.2% considered quitting within 6 months (n=52). Many participants reported perceived short-term benefits of smoking, and long-term benefits of quitting, on MS symptoms and general well-being (short-term n=28, 40.0%; long-term n=28, 82.4%). While most participants reported that their neurologist (n=126, 75.4%) or other healthcare providers (n=125, 74.9%) had assessed smoking status, very few neurologists (n=3, 1.8%) or other healthcare providers (n=14, 8.4%) had provided help with quitting. Most current smokers preferred speaking about smoking to a neurologist (n=36, 52.2%) or general practitioner (n=41, 59.4%). Almost 60% of the current smokers wanted additional cessation information specific to MS (n=41, 59.4%), and 45.5% said this information would motivate them to quit smoking (n=30). CONCLUSIONS: Our convenience sample, which may not be representative, indicated an urgent need for regular evidence-based smoking cessation supports for people with MS. Most participants felt they would benefit from smoking cessation advice. MS clinicians, in collaboration with patient organisations, smoking cessation services and general practitioners, should make smoking cessation promotion with people with MS a priority.


Subject(s)
Multiple Sclerosis , Smoking Cessation , Tobacco Smoke Pollution , Adult , Australia/epidemiology , Humans , Nicotine , Smoking/epidemiology
10.
BMJ Open ; 12(6): e055796, 2022 06 09.
Article in English | MEDLINE | ID: mdl-35680262

ABSTRACT

BACKGROUND: Comorbid depression is prevalent in people with multiple sclerosis (MS). Depression is commonly untreated or undertreated, thus, there is a need for effective and safe interventions and current guidelines recommend psychological and pharmaceutical interventions for people with MS. However, research suggests that other interventions, such as exercise, could also be effective. The comparative efficacy and safety of intervention modalities have not been quantified.We plan to conduct a systematic review and network meta-analysis to compare efficacy and safety of psychological, pharmaceutical, physical and magnetic stimulation interventions for depression in people with MS. METHODS AND ANALYSIS: We will search EMBASE, Medline, Cochrane CENTRAL, APA PsycINFO, Web of Science, CINAHL and PEDro from inception to 31 December 2021. Search terms will stem from three concepts: MS, depression and randomised controlled trials. Included studies will be randomised controlled trials, where participants are people with MS randomised to receive one of the aforementioned intervention types, and depression or depressive symptoms is the primary outcome, only outcome or secondary outcome with an a priori power calculation. Screening, data extraction and risk of bias assessment (using the Risk of Bias 2 tool) will be conducted independently by two reviewers. If possible, we will synthesise the evidence by fitting a frequentist network meta-analysis model with multivariate random effects, or a pairwise random-effects meta-analysis model. For each model, efficacy will be measured using a standardised mean difference, and safety using an OR. We plan to provide summary measures including forest plots, a geometry of the network, surface under the cumulative ranking curve, and a league table, and perform subgroup analyses. Otherwise, a narrative review will be provided. ETHICS AND DISSEMINATION: Ethics is not required for a systematic review and network meta-analysis. Results will be published in a peer reviewed journal. PROSPERO REGISTRATION NUMBER: CRD42020209803.


Subject(s)
Depression , Multiple Sclerosis , Comorbidity , Depression/therapy , Humans , Meta-Analysis as Topic , Multiple Sclerosis/complications , Network Meta-Analysis , Pharmaceutical Preparations , Randomized Controlled Trials as Topic , Systematic Reviews as Topic
11.
Mult Scler Relat Disord ; 57: 103362, 2022 Jan.
Article in English | MEDLINE | ID: mdl-35158469

ABSTRACT

BACKGROUND: Depression is common in people with multiple sclerosis (MS), with lifetime prevalence estimates between 25 and 50%. Depression is commonly underdiagnosed and undertreated in people with MS. This qualitative study assessed current practices, as well as facilitators and required resources to improve detection and management of depression in people with MS. METHODS: MS clinicians living in Australia were recruited through MS healthcare provider clinics and networks for online interviews. Interviews were transcribed and coded in NVivo for framework analysis. RESULTS: Participants included 15 MS specialists: nine nurses and six neurologists. Participants appreciated that depression was a common symptom of MS, and that untreated depression impacted patients' wellbeing, medication adherence, capacity for self-care, employment, and interpersonal relationships. Participants did not routinely screen for depression and noted that they lack the time and skills to manage depression once identified, most often recommending patients see their general practitioner. Clinicians recognised that people with MS commonly experience barriers to identifying and managing depressive symptoms, however few clinics provide information or discussion about depression as a symptom of MS with patients. CONCLUSION: Participants indicated a need for evidence-based guidance, more education and training to improve practices including screening for depression, and an urgent need for local referral pathways to affordable and accessible mental health services for people with MS. Findings suggest a need for better collaborative management of depression and improvement of systematic practices related to depression information, screening and treatment support.


Subject(s)
Multiple Sclerosis , Depression/diagnosis , Depression/epidemiology , Depression/therapy , Health Personnel , Humans , Multiple Sclerosis/complications , Multiple Sclerosis/diagnosis , Multiple Sclerosis/epidemiology , Qualitative Research , Specialization
12.
Acta Neurol Scand ; 145(4): 379-392, 2022 Apr.
Article in English | MEDLINE | ID: mdl-35037722

ABSTRACT

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.


Subject(s)
Complementary Therapies , Multiple Sclerosis , Smoking Cessation , Consensus , Humans , Life Style , Multiple Sclerosis/therapy
13.
Disabil Rehabil ; 44(8): 1380-1388, 2022 04.
Article in English | MEDLINE | ID: mdl-32940535

ABSTRACT

PURPOSE: Multiple sclerosis (MS) often leads to reduced physical activity and exercise participation. Sedentary behaviour is associated with poor health, whereas exercise is effective in managing MS symptoms. This study assessed physical activity, exercise and sedentary sitting time, and identified associations with symptoms. MATERIAL AND METHODS: Participants of the Australian MS Longitudinal Study completed surveys in 2016. We measured physical activity and sitting time via the International Physical Activity Questionnaire (short-form), and assessed participation in exercise (type and duration). Multivariable regression models assessed associations between physical activity, sitting time and exercise; and demographic characteristics and MS-related symptoms. RESULTS: Of the 1216 participants, 53.0% reported moderate-high physical activity levels (71.5% among those with no/mild disability). Median sitting time was 7 h/day. Most (78.4%) participated in aerobic exercise, while only 16.4% participated in strength training. Having a progressive MS onset, more severe symptoms (i.e., cognitive impairment, depression, fatigue, mobility impairment) and being male was indicative of lower physical activity levels and higher sitting time. CONCLUSIONS: Health promotion efforts should encourage physical activity and exercise, in particular strength training, among people with MS. People with more severe symptoms and progressive disease may require focused exercise promotion from healthcare professionals.Implications for RehabilitationComprehensive MS management should include strategies to increase physical activity and exercise participation, with particular focus upon people with higher MS-symptom burden (i.e., depression, fatigue and mobility and cognitive impairment), men, and those with progressive onset MS.Efforts to promote physical activity guidelines for people with MS and address barriers to physical activity must be implemented in standard MS care, with a particular focus on adhering to strength training guidelines.Exercise type and duration varies among people with MS, and it would behove healthcare professionals and researchers to consider promoting activities which align with individuals preferences and abilities when promoting exercise.


Subject(s)
Multiple Sclerosis, Chronic Progressive , Multiple Sclerosis , Australia , Exercise , Fatigue , Female , Humans , Longitudinal Studies , Male , Multiple Sclerosis/psychology , Sitting Position
14.
Mult Scler Relat Disord ; 56: 103290, 2021 Nov.
Article in English | MEDLINE | ID: mdl-34614457

ABSTRACT

BACKGROUND: Depression is common in people with multiple sclerosis (MS), yet often goes undetected, untreated or undertreated. OBJECTIVE: This qualitative research explored current practices, barriers and facilitators for detection and treatment of depression in Australians with MS. METHODS: Participants were 26 people with MS recruited through social media. Participants completed the Centre for Epidemiological Studies Depression-Revised (CESD-R) scale and in-depth telephone or video interviews. Interviews were analysed using framework analysis. RESULTS: Scores measured on the CESD-R proposed 73% of participants were experiencing severe depression symptoms. Participants reported that depression is not regularly and formally assessed through MS healthcare services and they are offered limited information about depression in MS. Barriers to mental health support included recognition of depression, resistance to treatment and limitations of collaborative support between general practitioners and MS healthcare services. Participants expressed a need for open conversations and information about depression during neurology consultations. CONCLUSION: Based on our findings, improved detection and treatment of depression in people with MS requires: 1) better provision of information about depression for people with MS through healthcare services and community organisations; 2) regular screening and assessment; 3) better healthcare services collaboration to improve management.


Subject(s)
Multiple Sclerosis , Australia/epidemiology , Depression/diagnosis , Depression/epidemiology , Depression/therapy , Humans , Mental Health , Multiple Sclerosis/complications , Multiple Sclerosis/diagnosis , Multiple Sclerosis/epidemiology , Qualitative Research
15.
Mult Scler Relat Disord ; 56: 103289, 2021 Nov.
Article in English | MEDLINE | ID: mdl-34610568

ABSTRACT

Introduction Smoking is a key modifiable risk factor in multiple sclerosis (MS). MS healthcare providers have a central role informing people of the deleterious effects of smoking on MS progression and promote smoking cessation, yet there is limited information about smoking cessation and support provided by these providers. This study aimed to gain an understanding of MS healthcare providers current practices, barriers and facilitators related to providing smoking cessation support for people with MS. Methods A total of 13 MS nurses and 6 neurologists working in public and private MS clinics across Australia were recruited through professional networks and MS organisations. Telephone interviews were conducted, transcribed and evaluated using framework analysis. Results MS nurses and neurologists reported that they routinely assess smoking status of people with MS at initial appointments and less regularly also at follow-up appointments. Clinicians considered it important to provide information about smoking impact on MS health outcomes and advise to cease smoking, but the content and delivery varies. Beyond this, some clinicians offer referral for smoking cessation support, while others stated this was not their responsibility, especially in light of competing priorities. Many were unsure about referral pathways and options, requiring more information, training and resources. Conclusion Results of this research indicate that there is potential to improve support for MS clinicians to promote smoking cessation among people with MS. Smoking cessation support may include tailored patient resources, clinician training and stronger collaboration with smoking cessation service providers.


Subject(s)
Multiple Sclerosis , Smoking Cessation , Attitude of Health Personnel , Health Personnel , Humans , Multiple Sclerosis/epidemiology , Multiple Sclerosis/therapy , Smoking
17.
Mult Scler Relat Disord ; 54: 103085, 2021 Sep.
Article in English | MEDLINE | ID: mdl-34175666

ABSTRACT

INTRODUCTION: Smoking is a key modifiable risk factor for health outcomes of people with multiple sclerosis (MS). Little evidence exists on whether the information and support needs of people with MS who smoke are met. This study aimed to explore knowledge, attitudes and beliefs about smoking and quitting, and quitting support needs in Australian people with MS. METHODS: Current and recent smokers were recruited for phone interviews through social media and newsletters. Interview data were analysed in NVivo using framework analysis. RESULTS: We interviewed 25 people with MS (20 current and five recent smokers). Many participants had little knowledge about the risks of smoking on MS progression. Some reported perceived benefits from smoking on MS symptoms, while others perceived smoking worsening their symptoms. Similarly, quitting was believed to have health benefits, but concerns about withdrawal symptoms and the impact on MS symptoms and relapses were common. Participants reported ambivalence discussing smoking with clinicians; some wanting more information and support, while also feeling shame or guilt. Many participants were asked about their smoking status by MS clinicians, however, the provision of evidence-based information, and referrals to quitting support services was very infrequent. General practitioners were often found helpful and supportive, but participants gave more weight to quit advice from MS clinicians. CONCLUSION: Our results are the first to indicate that smoking cessation needs of Australian people with MS are not met. These findings should be confirmed in a larger sample, but there is potential to investigate whether implementing routine provision of brief advice in MS care, as a coordinated effort between MS researchers, practitioners, consumer advocates and behavioural intervention services, may meet these needs. Further, developing targeted resources and training quit counsellors to provide appropriate information and support specific to people with MS may improve smoking cessation success in people with MS.


Subject(s)
Multiple Sclerosis , Smoking Cessation , Australia/epidemiology , Humans , Multiple Sclerosis/epidemiology , Multiple Sclerosis/therapy , Smoking , Nicotiana
18.
Eur J Clin Nutr ; 75(10): 1506-1514, 2021 10.
Article in English | MEDLINE | ID: mdl-33531638

ABSTRACT

BACKGROUND/OBJECTIVES: Associations between patterns of food intake and health in people with multiple sclerosis (MS) are of increasing global interest; however, Australian data are lacking. This study aimed to assess the dietary habits and associations with health outcomes of Australians with MS. SUBJECTS/METHODS: This cross-sectional study used 2016 survey data from the Australian MS Longitudinal Study, including the Dietary Habits Questionnaire, Hospital Anxiety and Depression Scale, Assessment of Quality of Life, Fatigue Severity Scale, Patient-Determined Disease Steps Scale and 13 MS symptoms scales. Regression models were constructed using directed acyclic graphs. RESULTS: Almost all (94.3%) of the 1490 participants reported making an effort to eating healthy with 21.2% following one or more specific diets, although often not strictly. Overall, 7.9% reported not eating meat, 8.1% reported not consuming dairy, and 4.0% consumed neither food group. A healthier diet score was associated with better mental, physical and total quality of life, and lower depression, and pain scores, and fewer cognition, vision and bowel symptoms. Higher reported fibre, fruit, vegetable and healthy fat scores were positively associated with most health outcomes. CONCLUSIONS: Healthier overall diet scores and higher fibre, fruit and vegetable scores were associated with better health outcomes in this sample of Australians adults with MS. However, the proportion of participants avoiding dairy and meat, or adhering to a specific MS diet was much lower than previously reported. Prospective dietary studies are needed to further understand whether dietary change is feasible and affects health outcomes over time.


Subject(s)
Multiple Sclerosis , Adult , Australia/epidemiology , Cross-Sectional Studies , Diet , Feeding Behavior , Fruit , Humans , Longitudinal Studies , Multiple Sclerosis/epidemiology , Outcome Assessment, Health Care , Quality of Life , Vegetables
19.
Mult Scler ; 26(3): 266-271, 2020 03.
Article in English | MEDLINE | ID: mdl-31219393

ABSTRACT

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.


Subject(s)
Multiple Sclerosis/therapy , Smoking Cessation , Smoking , Humans , Multiple Sclerosis/epidemiology , Multiple Sclerosis/etiology , Risk Factors , Smoking/adverse effects , Smoking/epidemiology , Smoking/therapy , Smoking Cessation/methods , Smoking Cessation/statistics & numerical data
20.
J Occup Rehabil ; 30(1): 105-114, 2020 03.
Article in English | MEDLINE | ID: mdl-31392475

ABSTRACT

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.


Subject(s)
Disabled Persons/psychology , Discrimination, Psychological , Employment/psychology , Mental Disorders/psychology , Multiple Sclerosis/psychology , Quality of Life , Unemployment/statistics & numerical data , Adult , Employment/statistics & numerical data , Female , Humans , Male , Mental Disorders/complications , Middle Aged , Multiple Sclerosis/complications , Prospective Studies , Surveys and Questionnaires
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