scholarly journals Impact of the COVID-19 pandemic on persons with multiple sclerosis: Early findings from a survey on disruptions in care and self-reported outcomes

2020 ◽  
pp. 135581962097506
Author(s):  
Tommaso Manacorda ◽  
Paolo Bandiera ◽  
Federica Terzuoli ◽  
Michela Ponzio ◽  
Giampaolo Brichetto ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Online Survey ◽  
Severe Disabilities ◽  
Psychological Consequences ◽  
Cross Sectional ◽  
Health And Wellbeing ◽  
Care Services ◽  
Health And Social Care ◽  
Negative Impacts

Objective To describe the disruptions in care experienced by persons with Multiple Sclerosis in Italy due to the COVID-19 pandemic and the self-reported impact on their health and wellbeing. Methods A cross-sectional online survey was completed by 2722 persons with Multiple Sclerosis, after Italy instituted a national lockdown in response to the pandemic. Results Persons with Multiple Sclerosis reported that the pandemic caused broad disruptions to usual health and social care services, which impacted on their health and wellbeing. Disruptions in care were consistently associated with negative self-reported impacts on the expected progression of the disease, on out-of-pocket expenditure and on carer’s stress. Psychological consequences were associated with interruption to usual psychological support, and concerns about the safety of care delivered in person. Conclusions The quality of life of persons with Multiple Sclerosis depends greatly on prompt access to a broad range of health and care services. Negative psychological impacts reported by persons with Multiple Sclerosis with less severe disabilities show that accessible integrated services are crucial for maintenance of their wellbeing. Most persons with Multiple Sclerosis with more severe disability experienced negative impacts on perceived health. Their carers compensating for lack of social input resulted in care overburden. As continuity of care is crucial for persons with Multiple Sclerosis, as well as for persons with chronic conditions in general, strategies must be in place to ensure it is included in future pandemic response plans.

scholarly journals Quality of Life of Brazilian Vegetarians Measured by the WHOQOL-BREF: Influence of Type of Diet, Motivation and Sociodemographic Data

Nutrients ◽  
2021 ◽  
Vol 13 (8) ◽  
pp. 2648
Author(s):  
Shila Minari Hargreaves ◽  
Eduardo Yoshio Nakano ◽  
Heesup Han ◽  
António Raposo ◽  
Antonio Ariza-Montes ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Online Survey ◽  
Well Being ◽  
Vegetarian Diet ◽  
The Other ◽  
Average Score ◽  
Cross Sectional ◽  
Domain 3 ◽  
Domain 4

This study aimed to evaluate the general quality of life (QoL) of Brazilian vegetarians. A cross-sectional study was conducted with Brazilian vegetarian adults (18 years old and above). Individuals were recruited to participate in a nationwide online survey that comprised the WHOQOL-BREF as well as sociodemographic and characterization questions related to vegetarianism. The WHOQOL-BREF is composed of 24 items which are divided into four domains (domain 1: physical health; domain 2: psychological well-being; domain 3: social relationships; and domain 4: environment), plus two general items which were analyzed separately, totaling 26 items. The answers from the questionnaire were converted into scores with a 0–100 scale range, with separate analyses for each domain. Results were compared among groups based on the different characteristics of the vegetarian population. A total of 4375 individuals completed the survey. General average score results were 74.67 (domain 1), 66.71 (domain 2), 63.66 (domain 3) and 65.76 (domain 4). Vegans showed better scores when compared to the other vegetarians, except in domain four, where the statistical difference was observed only for semi-vegetarians (lower score). Individuals adopting a vegetarian diet for longer (>1 year) showed better results for domains one and two, with no difference for the other domains. Having close people also adopting a vegetarian diet positively influenced the results for all domains. On the other hand, it was not possible to distinguish any clear influence of the motivation for adopting a vegetarian diet on the scores’ results. Adopting a vegetarian diet does not have detrimental effects on one’s QoL. In fact, the more plant-based the diet, and the longer it was adopted, the better the results were.

scholarly journals Impact of dementia education and training on health and social care staff knowledge, attitudes and confidence: a cross-sectional study

BMJ Open ◽  
2021 ◽  
Vol 11 (1) ◽  
pp. e039939
Author(s):  
Sahdia Parveen ◽  
Sarah Jane Smith ◽  
Cara Sass ◽  
Jan R Oyebode ◽  
Andrea Capstick ◽  
...  
Keyword(s):  
Online Survey ◽  
Social Care ◽  
Education And Training ◽  
Care Staff ◽  
Cross Sectional ◽  
Health And Social Care ◽  
Training Content ◽  
The Impact ◽  
And Training ◽  
Dementia Education

ObjectivesThe aim of this study was to establish the impact of dementia education and training on the knowledge, attitudes and confidence of health and social care staff. The study also aimed to identify the most effective features (content and pedagogical) of dementia education and training.DesignCross-sectional survey study. Data collection occurred in 2017.SettingsHealth and social care staff in the UK including acute care, mental health community care trusts, primary care and care homes.ParticipantsAll health and social care staff who had completed dementia education and training meeting the minimal standards as set by Health Education England, within the past 5 years were invited to participate in an online survey. A total of 668 health and social care staff provided informed consent and completed an online survey, and responses from 553 participants were included in this study. The majority of the respondents were of white British ethnicity (94.4%) and identified as women (88.4%).OutcomesKnowledge, attitude and confidence of health and social care staff.ResultsHierarchical multiple regression analysis was conducted. Staff characteristics, education and training content variables and pedagogical factors were found to account for 29% of variance in staff confidence (F=4.13, p<0.001), 22% of variance in attitude (knowledge) (F=3.80, p<001), 18% of the variance in staff knowledge (F=2.77, p<0.01) and 14% of variance in staff comfort (attitude) (F=2.11, p<0.01).ConclusionThe results suggest that dementia education and training has limited impact on health and social care staff learning outcomes. While training content variables were important when attempting to improve staff knowledge, more consideration should be given to pedagogical factors when training is aiming to improve staff attitude and confidence.

scholarly journals Diabetes knowledge, risk perception, and quality of life among South Asian caregivers in young adulthood

2020 ◽  
Vol 8 (2) ◽  
pp. e001268
Author(s):  
Angela Koipuram ◽  
Sandra Carroll ◽  
Zubin Punthakee ◽  
Diana Sherifali
Keyword(s):  
Quality Of Life ◽  
Risk Perception ◽  
South Asian ◽  
Online Survey ◽  
Educational Interventions ◽  
Cross Sectional Study ◽  
Cross Sectional ◽  
Significant Difference ◽  
Design And Methods

IntroductionPersons of South Asian descent have a higher prevalence of type 2 diabetes mellitus (T2DM). The management of T2DM in the South Asian community has required the support of adult children, potentially impacting the quality of life, diabetes-related knowledge, and risk perception among these caregivers.Research design and methodsTo investigate diabetes-related knowledge, quality of life, risk perception, and actual risk of developing diabetes among South Asian young adults whose parents are living with T2DM. A cross-sectional study was conducted (n=150). An online survey was administered. Data were analyzed with descriptive and inferential statistics.ResultsThere was a statistically significant difference in diabetes-related knowledge between males and females (p<0.001). Males (in comparison to females) had a lower risk perception of developing diabetes (p=0.06). Further, risk perception and diabetes-related knowledge were positively associated with caregiver’s physical health (p=0.002).ConclusionFindings highlight the importance of providing gender-specific and culturally tailored diabetes educational interventions.

scholarly journals Adherence to Therapy, Physical and Mental Quality of Life in Patients with Multiple Sclerosis

2021 ◽  
Vol 11 (7) ◽  
pp. 672
Author(s):  
Alessandra Buja ◽  
Guendalina Graffigna ◽  
Simona F. Mafrici ◽  
Tatjana Baldovin ◽  
Carlo Pinato ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Behavioral Interventions ◽  
Positive Association ◽  
Cross Sectional Study ◽  
Health Index ◽  
Online Questionnaire ◽  
Cross Sectional ◽  
Adherence To Therapy

Ensuring multiple sclerosis (MS) patients’ adherence to therapy is often challenging, but it is crucial to their survival and health-related quality of life (HRQoL). The aim of the present study was to outline connections between adherence, physical and mental HRQoL, levels of psychological readiness to engage in a treatment, levels of social support, anthropometric, socio-demographic and clinical factors in patients suffering from MS. This cross-sectional study involved a sample of 237 Italian MS patients. A survey was conducted with a structured self-administered online questionnaire using validated measures of quality of life, adherence to therapy and anthropometric, socio-demographic, psychological and clinical variables. A path analysis was used to test the overall structure of the associations between the variables. The pathway indicates a positive association between mental health index and a stronger degree of engagement and being or having been in a long-term relationship. Physical health index was positively associated with age, having an occupation, and having a specific form of MS. Having had relapses in the previous year raised the odds of better adherence to therapy, while an increase in Body Mass Index (BMI) reduced them. Our findings could help in the management of MS patients, promoting behavioral interventions that take the psychological and socio-demographic peculiarities of each patient into account with a view to improving their adherence to therapy.

scholarly journals Quality of life in multiple sclerosis: The differential impact of motor and cognitive fatigue

2021 ◽  
Vol 7 (1) ◽  
pp. 205521732199604
Author(s):  
Sabina David Ruban ◽  
Claudia Christina Hilt ◽  
Thor Petersen
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Short Form ◽  
Cross Sectional Study ◽  
University Hospital ◽  
Cognitive Fatigue ◽  
Cross Sectional ◽  
Impact Scale ◽  
Assessment And Treatment

Background Multiple sclerosis is a chronic disease leading to reduced quality of life. Objectives To investigate whether motor and cognitive fatigue impact differently on aspects of quality of life among patients with multiple sclerosis, independently from bodily disability. Methods 79 patients with multiple sclerosis from Aalborg University Hospital, Denmark were included in an observational, cross-sectional study. Each subject completed two separate questionnaires regarding fatigue (Fatigue Scale for Motor and Cognitive Functions and Modified Fatigue Impact Scale) and one regarding quality of life (Short Form 36). Disability was measured with the Expanded Disability Status Scale (EDSS)-scores obtained from patient records. Results All fatigue scores were significantly correlated to all areas of quality of life (p < 0,05). This remained significant after adjustment for age, disease duration and EDSS-score. When looking at each type of fatigue separately, cognitive fatigue correlated mainly with mental health aspects of quality of life and motor fatigue with physical health areas of quality of life. Conclusion Increased motor and cognitive fatigue lead to a differential reduction in physical and mental quality of life, independently of bodily disability. This underlines the importance of proper assessment and treatment of fatigue among patients with multiple sclerosis.

scholarly journals Clinical and cost evaluation of intensive support team (IST) models for adults with intellectual disabilities who display challenging behaviour: a comparative cohort study protocol

BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e043358
Author(s):  
Angela Hassiotis ◽  
Athanasia Kouroupa ◽  
Rebecca Jones ◽  
Nicola Morant ◽  
Ken Courtenay ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cost Effectiveness ◽  
Intellectual Disabilities ◽  
Online Survey ◽  
Service Use ◽  
Cost Evaluation ◽  
Challenging Behaviour ◽  
Health And Social Care ◽  
Adults With Intellectual Disabilities

IntroductionApproximately 17% of adults with intellectual disabilities (ID) living in the community display behaviours that challenge. Intensive support teams (ISTs) have been recommended to provide high-quality responsive care aimed at avoiding unnecessary admissions and reducing lengthy inpatient stays in England. We have identified two models of ISTs (model 1: enhanced provision and model 2: independent provision). This study aims to investigate the clinical and cost-effectiveness of the two models of ISTs.Methods and analysisA cohort of 226 adults with ID displaying behaviour that challenges who receive support from ISTs from each model will be recruited and assessed at baseline and 9 months later to compare the clinical and cost-effectiveness between models. The primary outcome is reduction in challenging behaviour measured by the Aberrant Behaviour Checklist-Community (ABC-C). The mean difference in change in ABC score between the two IST models will be estimated from a multilevel linear regression model. Secondary outcomes include mental health status, clinical risk, quality of life, health-related quality of life, level of functioning and service use. We will undertake a cost-effectiveness analysis taking both a health and social care and wider societal perspective. Semistructured interviews will be conducted with multiple stakeholders (ie, service users, paid/family carers, IST managers/staff) to investigate the experience of IST care as well as an online survey of referrers to capture their contact with the teams.Ethics and disseminationThe study was approved by the London–Bromley Research Ethics Committee (REC reference: 18/LO/0890). Informed consent will be obtained from the person with ID, or a family/nominated consultee for those lacking capacity and from his/her caregivers. The findings of the study will be disseminated to academic audiences, professionals, experts by experience and arm’s-length bodies and policymakers via publications, seminars and digital platforms.Trial registration numberClinicalTrials.gov Registry (NCT03586375).

Quality of life in multiple sclerosis patients in Spain

2002 ◽  
Vol 8 (6) ◽  
pp. 527-531 ◽  
Author(s):  
C-H Chang ◽  
D Cella ◽  
O Fernández ◽  
G Luque ◽  
P de Castro ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Well Being ◽  
Cross Sectional Study ◽  
Self Report ◽  
Regression Analyses ◽  
Cross Sectional ◽  
Scale Scores ◽  
Multiple Sclerosis Patients

Objective: The cross-sectional study evaluated the psychometric properties of the Functional Assessment of Multiple Sclerosis (FAMS) Spanish version and its use in measuring quality of life (QOL) of multiple sclerosis (MS) patients in Spain. Methods: The FAMS is a factorially derived self-report scale designed to assess six primary aspects of QOL of patients with MS: Mobility, Symptoms, Emotional Well-Being, General Contentment, Thinking and Fatigue, and Family/Social Well-Being. Its Spanish translated version was used to assess QOL of 625 MS patients recruited in an outpatient clinic setting from 58 hospitals in Spain. Internal consistency of the Spanish FAMS was evaluated. Multiple regression analyses were performed to identify significant predictors from demographic, clinical and treatment characteristics, and Kurtzke Expanded Disability Status Scale (EDSS) scores in predicting FAMS scale scores. Results: Most of the patients are females (66%), and 74% were of the relapsing-remitting (RR) clinical subtype. Cronbach’s alpha coefficients were high (range=0.78-0.96), indicating subscale homogeneity comparable to that of the original English version. Linear multivariate regression analyses revealed that the EDSS is a dominant variable in predicting all the FAMS subscales, especially mobility (R2=0.51) and the total scores. Conclusions: The Spanish FAMS is a psychometrically valid instrument that allows clinicians and clinical researchers the ability to measure the QOL concerns of MS patients in Spain.

Quality of Antenatal, Labour and Delivery Services in Selected Districts in Malawi, Zambia and Zimbabwe: A Descriptive Cross-Sectional Study

2021 ◽  
pp. 1-9
Author(s):  
Clara Opha Haruzivishe
Keyword(s):  
Perinatal Care ◽  
Neonatal Morbidity ◽  
Health Facilities ◽  
Sub Saharan Africa ◽  
Morbidity And Mortality ◽  
World Health ◽  
Performance Standard ◽  
Cross Sectional ◽  
Care Services

Background: High Maternal and Neonatal Mortality Ratios persist in Sub-Saharan Africa despite increasing perinatal care coverage. This suggests that coverage alone is not adequate to reduce maternal and neonatal morbidity and mortality. Quality of care should be the emphasis of maternal and child care services. Materials and Methods: A descriptive cross-sectional multicentre study was conducted in selected health facilities in Zambia, Malawi and Zimbabwe using purposive sampling. A World Health Organization-WHO 2016 Quality of Maternal and New-born assessment Framework and the WHO (2015) Service Availability and Readiness Assessment tool were used for data collection. Data was analyzed using Statistical Package for Social Scientist (SPSS) version 24.0. Results: Less than 43% of the health facilities satisfied at least three of the five Performance Standards of availability and adequacy of Antenatal infrastructure and supplies. Regarding Antenatal processes/care, an observation was the most common performance standard satisfied by 70.6% of all health facilities assessed while less than 30% fulfilled all other standards. Only 57.1% of the health facilities satisfied 5 of the 11 standards for labour and delivery infrastructure, while only 55.6% of the Health facilities satisfied only two of the 13 standards of Labour and delivery care. Conclusion: To achieve a significant and sustainable reduction in maternal and neonatal morbidity and mortality, there is a need for investment and improvement in maternity care services infrastructure and processes as opposed to focusing on mere attendance of Antenatal, and deliveries by trained birth attendants.

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