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1.
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
2.
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
3.
J Adv Nurs ; 77(3): 1172-1187, 2021 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-33314252

RESUMO

AIM: To synthesize Registered Nurses' self-reported perceptions and experiences of psychological well-being and ill-being during their first year of practice. DESIGN: Qualitative meta-synthesis. DATA SOURCES: Databases included Cumulative Index of Nursing and Allied Health Literature, Excerpta Medica database, Medical Literature Analysis and Retrieval System Online and Psychological Information. Qualitative studies were considered for inclusion if published in English, from 2009-2019, reporting primary data analysis including psychological well-being and ill-being experiences of graduate nurses in first year of practice. REVIEW METHODS: Qualitative studies were systematically identified and critically appraised. A meta-synthesis was applied using an open card sort technique to organize empirical data into a matrix of graduate nurses' voices of psychological well-being and ill-being. RESULTS: Twenty-two studies were included. Analysis revealed patterns of positive experiences and emotions. These included feeling valued and part of the team and learning from and feeling supported by other nurses. Negative experiences and emotions such as feeling overwhelmed, stressed, alone and inadequately prepared were also identified. CONCLUSION: Graduate nurses' perceptions and experiences of their psychological well-being and ill-being revealed both positive and negative dimensions during this transition period. Specific examples of strategies that may promote transition nurses' well-being and prevent ill-being were identified such as social connection and support. IMPACT: Increasing the numbers of new nursing graduates world-wide is required to strengthen health systems. Developing strategies to retain these graduates in the workforce is paramount. This review found some graduate nurses experience the transition period as a time of personal growth and fulfilment, for others this period was a stressor. These findings were illustrated in a model of 'ways to well-being'. The potential for knowledge translation of this model extends from graduate nurses as individuals, to nurse entry to practice programs and graduate nurse programs, to organizational policy targeting future health workforce. SYSTEMATIC REVIEW REGISTRATION NUMBER: CRD42020148812.


Assuntos
Enfermeiras e Enfermeiros , Humanos , Pesquisa Qualitativa , Recursos Humanos
4.
Collegian ; 28(6): 709-719, 2021 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-34924806

RESUMO

BACKGROUND: The wellbeing of individuals influences organisational outcomes. Insight into nurses' wellbeing is crucial to a sustaining a high-quality workforce. AIM: To describe nurses' perceptions and experiences of wellbeing, work wellbeing, and mental health. METHOD: Using a qualitative descriptive design, semi-structured interviews were conducted, transcribed verbatim, analysed inductively and thematically, and reported per consolidated criteria for reporting qualitative research. FINDINGS: Nine Australian nurses were interviewed in 2020, each for 60 to 90 minutes. These nurses had a broad range of clinical roles and years of experience in metropolitan healthcare organisations. Six themes, each related to nurse wellbeing, depicted: (i) value and sense of purpose from nursing, yet also negative consequences of losing sight of oneself within the nursing role; (ii) work nurses did to disengage from their job and create a balance within their life; (iii) significance of the team and senior team as a source of both strength and opportunity for wellbeing; (iv) a range of wellbeing initiatives with a perception these were often developed, and for use, in response to crisis as opposed to preventative or proactive measures; (v) value of additional nurse wellbeing education and promotion of available support; and (vi) novel challenges and ways to wellbeing during times where resources were stretched and usual support systems impacted. DISCUSSION: Identified positive and negative consequences of nursing must be addressed when developing targeted wellbeing interventions. CONCLUSION: New ways of working and supporting individual, team and organisational wellbeing are needed for flourishing working environments. Potential strategies to either leverage or mitigate the positive and negative consequences of nursing are offered.

5.
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
6.
J Occup Rehabil ; 30(1): 105-114, 2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-31392475

RESUMO

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.


Assuntos
Pessoas com Deficiência/psicologia , Discriminação Psicológica , Emprego/psicologia , Transtornos Mentais/psicologia , Esclerose Múltipla/psicologia , Qualidade de Vida , Desemprego/estatística & dados numéricos , Adulto , Emprego/estatística & dados numéricos , Feminino , Humanos , Masculino , Transtornos Mentais/complicações , Pessoa de Meia-Idade , Esclerose Múltipla/complicações , Estudos Prospectivos , Inquéritos e Questionários
7.
Arch Phys Med Rehabil ; 100(1): 128-139, 2019 01.
Artigo em Inglês | MEDLINE | ID: mdl-30240593

RESUMO

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.


Assuntos
Dor Crônica/reabilitação , Terapia por Exercício/métodos , Esclerose Múltipla/complicações , Manejo da Dor/métodos , Adulto , Dor Crônica/etiologia , Avaliação da Deficiência , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Medição da Dor , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , Análise de Regressão , Resultado do Tratamento
8.
Med J Aust ; 209(8): 342-347, 2018 10 15.
Artigo em Inglês | MEDLINE | ID: mdl-30107763

RESUMO

OBJECTIVE: To determine the prevalence, predictors, and characteristics of health-related internet searches by adult emergency department (ED) patients; to examine the effect of searching on the doctor-patient relationship and treatment compliance. DESIGN: A multi-centre, observational, cross-sectional study; a purpose-designed 51-item survey, including tools for assessing e-health literacy (eHEALS) and the effects of internet searching on the doctor-patient relationship (ISMII). Setting, participants: 400 adult patients presenting to two large tertiary referral centre emergency departments in Melbourne, February-May 2017. OUTCOME MEASURES: Descriptive statistics for searching prevalence and characteristics, doctor-patient interaction, and treatment compliance; predictors of searching; effect of searching on doctor-patient interaction. RESULTS: 400 of 1056 patients screened for eligibility were enrolled; their mean age was 47.1 years (SD, 21.1 years); 51.8% were men. 196 (49.0%) regularly searched the internet for health information; 139 (34.8%) had searched regarding their current problem before presenting to the ED. The mean ISMII score was 30.3 (95% CI, 29.6-31.0); searching improved the doctor-patient interaction for 150 respondents (77.3%). Younger age (per 10-year higher age band: odds ratio [OR], 0.74; 95% CI, 0.61-0.91) and greater e-health literacy (per one-point eHEALS increase: OR, 1.11; 95% CI, 1.06-1.17) predicted searching the current problem prior to presentation; e-health literacy predicted ISMII score (estimate, 0.39; 95% CI, 0.20-0.39). Most patients would never or rarely doubt their diagnosis (79%) or change their treatment plan (91%) because of conflicting online information. CONCLUSION: Online health care information was frequently sought before presenting to an ED, especially by younger and e-health literate patients. Searching had a positive impact on the doctor-patient interaction and was unlikely to reduce adherence to treatment.


Assuntos
Serviço Hospitalar de Emergência , Letramento em Saúde , Internet , Ferramenta de Busca , Adulto , Idoso , Estudos Transversais , Feminino , Letramento em Saúde/métodos , Letramento em Saúde/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Cooperação do Paciente , Relações Médico-Paciente
9.
Palliat Med ; 32(2): 439-446, 2018 02.
Artigo em Inglês | MEDLINE | ID: mdl-29130378

RESUMO

BACKGROUND: Despite being a common event in the course of an advanced cancer illness, there is little understanding of patients' perceptions of hospital Emergency Department presentations. AIM: To explore the experiences and perceptions of Emergency Departments held by patients with advanced cancer and their informal caregivers. DESIGN: Cross-sectional study involving semi-structured interviews with advanced cancer patients and their informal caregivers. Qualitative data analysis was underpinned by a phenomenological approach utilising a data-driven inductive thematic frame. SETTING/PARTICIPANTS: In total, 19 patients with advanced cancer who presented to Emergency Departments in the previous 6 months and 10 informal caregivers from an Australian public hospital and community palliative care service were interviewed. RESULTS: Patients reported that Emergency Department presentations were largely prompted by worsening symptoms or were a means to expedite hospital admission, with many instructed to attend by their health care provider. The experience in the Emergency Department was described as a time of anxiety and uncertainty with concerns over communication, the general environment and delays in the symptom management highlighted. Long waits were common. Despite this, patients described relief at receiving care. While the Emergency Department was viewed as a safety net for the health system, many believed advanced cancer patients should have alternative options. CONCLUSION: Relatively simple changes of regular communication updates and early symptom relief would improve patient experience of Emergency Department care. However, since an Emergency Department presentation is frequently serving as a default to access medical care, a significant re-orientation of the health care system is required to meet patient needs.


Assuntos
Cuidadores , Serviço Hospitalar de Emergência , Neoplasias/patologia , Cuidados Paliativos , Satisfação do Paciente , Idoso , Austrália , Estudos Transversais , Serviço Hospitalar de Emergência/estatística & dados numéricos , Humanos , Entrevistas como Assunto , Masculino , Pesquisa Qualitativa
10.
Br J Nurs ; 27(6): 322-327, 2018 Mar 22.
Artigo em Inglês | MEDLINE | ID: mdl-29561674

RESUMO

This study aimed to systematically review evidence to assess the efficacy of non-pharmacological brief interventions in the emergency department to reduce the incidence, severity and impact of acute behavioural disturbances. The literature search was conducted in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. A total of 18 articles were identified as meeting the inclusion criteria and read in full. Following a full read and a consensus discussion, it was subsequently considered the studies chosen had not met the inclusion criteria. Research into the use of non-pharmacological brief interventions in the management of acute behavioural disturbance in the emergency department is warranted given the absence of evidence found by this systematic review.


Assuntos
Serviço Hospitalar de Emergência/organização & administração , Transtornos Mentais/terapia , Humanos
11.
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
12.
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
13.
Support Care Cancer ; 24(3): 1251-60, 2016 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-26306522

RESUMO

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.


Assuntos
Serviço Hospitalar de Emergência/estatística & dados numéricos , Hospitalização/estatística & dados numéricos , Neoplasias/terapia , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos de Coortes , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/mortalidade , Estudos Retrospectivos , Resultado do Tratamento , Vitória , Adulto Jovem
14.
BMC Neurol ; 15: 132, 2015 Aug 05.
Artigo em Inglês | MEDLINE | ID: mdl-26243188

RESUMO

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.


Assuntos
Suplementos Nutricionais , Esclerose Múltipla Recidivante-Remitente/fisiopatologia , Qualidade de Vida , Luz Solar , Vitamina D/uso terapêutico , Vitaminas/uso terapêutico , Atividades Cotidianas , Adulto , Estudos de Coortes , Estudos Transversais , Feminino , Geografia , Nível de Saúde , Humanos , Estilo de Vida , Modelos Lineares , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla/fisiopatologia , Fatores de Proteção , Recidiva , Fatores de Risco , Índice de Gravidade de Doença
15.
Nutr Neurosci ; 18(3): 125-36, 2015 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-24628020

RESUMO

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.


Assuntos
Dieta , Avaliação da Deficiência , Comportamento Alimentar , Esclerose Múltipla/complicações , Esclerose Múltipla/psicologia , Qualidade de Vida/psicologia , Adulto , Doença Crônica , Progressão da Doença , Feminino , Nível de Saúde , Humanos , Internacionalidade , Estilo de Vida , Masculino , Pessoa de Meia-Idade , Recidiva , Fatores de Risco , Inquéritos e Questionários
16.
Palliat Med ; 29(4): 293-301, 2015 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-25634627

RESUMO

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.


Assuntos
Atitude do Pessoal de Saúde , Serviço Hospitalar de Emergência , Cuidados Paliativos , Adulto , Austrália , Compreensão , Feminino , Grupos Focais , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/terapia , Relações Profissional-Paciente , Pesquisa Qualitativa
17.
Neurol Sci ; 36(6): 845-52, 2015 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-25638416

RESUMO

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.


Assuntos
Estilo de Vida , Esclerose Múltipla/terapia , Avaliação de Resultados da Assistência ao Paciente , Qualidade de Vida , Adolescente , Adulto , Doença Crônica , Fadiga/complicações , Fadiga/terapia , Feminino , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla/complicações , Inquéritos e Questionários , Resultado do Tratamento , Adulto Jovem
18.
Teach Learn Med ; 27(1): 71-9, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-25584474

RESUMO

THEORY: Immersive simulation is a common mode of education for medical students. Observation of clinical simulations prior to participation is believed to be beneficial, though this is often a passive process. Active observation may be more beneficial. HYPOTHESES: The hypothesis tested in this study was that the active use of a simple checklist during observation of an immersive simulation would result in better participant performance in a subsequent scenario compared with passive observation alone. METHODS: Medical students were randomized to either passive or active (with checklist) observation of an immersive simulation involving cardiac arrest prior to participating in their own simulation. Performance measures included time to cardiopulmonary resuscitation (CPR) and time to defibrillation and were compared between first and second scenarios as well as between passive and active observers. RESULTS: Seventy-nine simulations involving 232 students were conducted. Mean time to CPR was 18 seconds (SD = 11.6) for those using the checklist and 24 seconds (SD = 15.8) for those who observed passively (M difference = 6 seconds), t(35) = 1.46, p =.153. Time to defibrillation was 94 seconds (SD = 26.4) for those using the checklist and 92 seconds (SD = 23.8) for those who observed passively (M difference = -2 seconds), t(38) =.21, p =.837. Time to CPR was 24 seconds (SD = 15.8) for passive observers and 31 seconds (SD = 21.0; M difference = 7 seconds), t(35) = 1.13, p =.265, for their first scenario counterparts. Time to CPR was 18 seconds (SD = 11.6) for active observers and 36 seconds (SD = 26.2; M difference = 18 seconds), t(24) = 2.81, p =.010, for their first scenario counterparts. Time to defibrillation was 92 seconds (SD = 23.8) for passive observers and 125 seconds (SD = 32.2; M difference = 33 seconds), t(33) = 3.63, p =.001, for their first scenario counterparts. Time to defibrillation was 94 seconds (SD = 26.4) for the active observers and 132 seconds (SD = 52.9; M difference = 38 seconds), t(28) =.46, p =.008, for their first scenario counterparts. CONCLUSIONS: Observation alone leads to improved performance in the management of a simulated cardiac arrest. The active use of a simple skills-based checklist during observation did not appear to improve performance over passive observation alone.


Assuntos
Reanimação Cardiopulmonar/educação , Lista de Checagem , Educação de Graduação em Medicina/métodos , Cardioversão Elétrica , Parada Cardíaca/terapia , Adulto , Algoritmos , Avaliação Educacional , Feminino , Humanos , Masculino , Manequins , Observação , Fatores de Tempo
19.
BMC Neurol ; 14: 143, 2014 Jul 12.
Artigo em Inglês | MEDLINE | ID: mdl-25016312

RESUMO

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.


Assuntos
Atividade Motora , Esclerose Múltipla/complicações , Esclerose Múltipla/psicologia , Qualidade de Vida , Adulto , Coleta de Dados , Avaliação da Deficiência , Feminino , Humanos , Masculino , Pessoa de Meia-Idade
20.
BMC Psychiatry ; 14: 327, 2014 Dec 03.
Artigo em Inglês | MEDLINE | ID: mdl-25467385

RESUMO

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.


Assuntos
Transtorno Depressivo/etiologia , Estilo de Vida , Esclerose Múltipla/psicologia , Adulto , Estudos Transversais , Suplementos Nutricionais , Pessoas com Deficiência , Escolaridade , Emprego , Exercício Físico/fisiologia , Ácidos Graxos Ômega-3/administração & dosagem , Feminino , Humanos , Masculino , Estado Civil , Pessoa de Meia-Idade , Obesidade/psicologia , Qualidade de Vida , Fatores de Risco , Fumar/psicologia , Apoio Social , Inquéritos e Questionários , Vitamina D/administração & dosagem , Vitaminas/administração & dosagem
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