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Multiple Sclerosis (Houndmills,... Dec 2023Persons with multiple sclerosis (pwMS) might be particularly well suited to benefit from digital health applications because they are, on average, younger and less... (Review)
Review
BACKGROUND
Persons with multiple sclerosis (pwMS) might be particularly well suited to benefit from digital health applications because they are, on average, younger and less severely disabled than patients with many other chronic diseases. Many digital health applications for pwMS have been developed.
OBJECTIVES
Analysis of the evidence of digital health applications to improve health outcomes from a patient perspective.
METHODS
A systematic review was performed on all randomized controlled trials (RCTs) that have studied mobile health interventions for pwMS, that is, which can be applied with a smartphone, tablet, or laptop to improve patient-reported outcomes.
RESULTS
Of the 1127 articles identified in the literature search, 13 RCTs fit the inclusion criteria. Two trials studied messaging systems, two depression interventions, one addressed MS fatigue, five cognition, and three mobility issues, of which two focused on spasticity management. One trial aimed to enhance physical activity. Most were pilot studies that cannot yield definitive conclusions regarding efficacy. One depression intervention and one fatigue intervention showed significant results across several outcomes.
CONCLUSION
Several mobile self-guided digital health applications for pwMS have been tested in RCTs, and two interventions targeting depression and fatigue have demonstrated significant effects. Challenges remain regarding implementation into routine care.
Topics: Humans; Smartphone; Chronic Disease; Multiple Sclerosis; Telemedicine; Fatigue
PubMed: 37897326
DOI: 10.1177/13524585231201089 -
HERD Oct 2023The presented systematic review explores the empirical studies regarding environmental design strategies that support adaptive behaviors while improving problem...
OBJECTIVES
The presented systematic review explores the empirical studies regarding environmental design strategies that support adaptive behaviors while improving problem behaviors of people with intellectual and developmental disabilities (IDD).
BACKGROUND
People with IDD perceive and interact with their environment differently from people without disabilities. Design research has not always considered these differences, and environmental design solutions are not commonly found.
METHODS
The review process followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses protocols. The study reports the findings from the systematic review of 32 peer-reviewed studies published in EBSCO, ERIC, ProQuest, PsycINFO, MEDLINE CINAHL, Consumer Health Complete (EBSCOhost), and Psychology and Behavioral Sciences Collection between 1990 and 2020. In addition, quality assessment tools appraised the study's quality.
RESULTS
The review identified 26 design strategies. Five themes qualitatively organized these environmental attributes: coherence, affordance, control, stimulation, and restoration.
CONCLUSION
The evidence indicates that adequately designed physical environments can support the adaptive behaviors of people with IDD while alleviating behavioral problems. Design features not supported by strong empirical evidence should be further addressed in future studies.
Topics: Child; Humans; Developmental Disabilities; Disabled Persons; Intellectual Disability; Problem Behavior
PubMed: 37165644
DOI: 10.1177/19375867231173393 -
The Lancet. Infectious Diseases May 2024Chikungunya is an arboviral disease transmitted by Aedes aegypti and Aedes albopictus mosquitoes with a growing global burden linked to climate change and globalisation.... (Meta-Analysis)
Meta-Analysis
Chikungunya seroprevalence, force of infection, and prevalence of chronic disability after infection in endemic and epidemic settings: a systematic review, meta-analysis, and modelling study.
BACKGROUND
Chikungunya is an arboviral disease transmitted by Aedes aegypti and Aedes albopictus mosquitoes with a growing global burden linked to climate change and globalisation. We aimed to estimate chikungunya seroprevalence, force of infection (FOI), and prevalence of related chronic disability and hospital admissions in endemic and epidemic settings.
METHODS
In this systematic review, meta-analysis, and modelling study, we searched PubMed, Ovid, and Web of Science for articles published from database inception until Sept 26, 2022, for prospective and retrospective cross-sectional studies that addressed serological chikungunya virus infection in any geographical region, age group, and population subgroup and for longitudinal prospective and retrospective cohort studies with data on chronic chikungunya or hospital admissions in people with chikungunya. We did a systematic review of studies on chikungunya seroprevalence and fitted catalytic models to each survey to estimate location-specific FOI (ie, the rate at which susceptible individuals acquire chikungunya infection). We performed a meta-analysis to estimate the proportion of symptomatic patients with laboratory-confirmed chikungunya who had chronic chikungunya or were admitted to hospital following infection. We used a random-effects model to assess the relationship between chronic sequelae and follow-up length using linear regression. The systematic review protocol is registered online on PROSPERO, CRD42022363102.
FINDINGS
We identified 60 studies with data on seroprevalence and chronic chikungunya symptoms done across 76 locations in 38 countries, and classified 17 (22%) of 76 locations as endemic settings and 59 (78%) as epidemic settings. The global long-term median annual FOI was 0·007 (95% uncertainty interval [UI] 0·003-0·010) and varied from 0·0001 (0·00004-0·0002) to 0·113 (0·07-0·20). The highest estimated median seroprevalence at age 10 years was in south Asia (8·0% [95% UI 6·5-9·6]), followed by Latin America and the Caribbean (7·8% [4·9-14·6]), whereas median seroprevalence was lowest in the Middle East (1·0% [0·5-1·9]). We estimated that 51% (95% CI 45-58) of people with laboratory-confirmed symptomatic chikungunya had chronic disability after infection and 4% (3-5) were admitted to hospital following infection.
INTERPRETATION
We inferred subnational heterogeneity in long-term average annual FOI and transmission dynamics and identified both endemic and epidemic settings across different countries. Brazil, Ethiopia, Malaysia, and India included both endemic and epidemic settings. Long-term average annual FOI was higher in epidemic settings than endemic settings. However, long-term cumulative incidence of chikungunya can be similar between large outbreaks in epidemic settings with a high FOI and endemic settings with a relatively low FOI.
FUNDING
International Vaccine Institute.
Topics: Chikungunya Fever; Humans; Seroepidemiologic Studies; Chikungunya virus; Prevalence; Epidemics; Endemic Diseases; Adult; Disabled Persons; Male; Female
PubMed: 38342105
DOI: 10.1016/S1473-3099(23)00810-1 -
PloS One 2023Over 1.3 billion people, or 16% of the world's population, live with some form of disability. Recent studies have reported that people with disabilities (PwD) might not...
BACKGROUND
Over 1.3 billion people, or 16% of the world's population, live with some form of disability. Recent studies have reported that people with disabilities (PwD) might not be receiving state-of-the-art treatment for cancer as their non-disabled peers; our objective was to systematically review this topic.
METHODS
A systematic review was undertaken to compare cancer outcomes and quality of cancer care between adults with and without disabilities (NIHR Prospero register ID number: CRD42022281506). A search of the literature was performed in July 2022 across five databases: EMBASE, Medline, Cochrane Library, Web of Science and CINAHL databases. Peer-reviewed quantitative research articles, published in English from 2000 to 2022, with interventional or observational study designs, comparing cancer outcomes between a sample of adult patients with disabilities and a sample without disabilities were included. Studies focused on cancer screening and not treatment were excluded, as well as editorials, commentaries, opinion papers, reviews, case reports, case series under 10 patients and conference abstracts. Studies were evaluated by one reviewer for risk of bias based on a set of criteria according to the SIGN 50 guidelines. A narrative synthesis was conducted according to the Cochrane SWiM guidelines, with tables summarizing study characteristics and outcomes. This research received no external funding.
RESULTS
Thirty-one studies were included in the systematic review. Compared to people without disabilities, PwD had worse cancer outcomes, in terms of poorer survival and higher overall and cancer-specific mortality. There was also evidence that PwD received poorer quality cancer care, including lower access to state-of-the-art care or curative-intent therapies, treatment delays, undertreatment or excessively invasive treatment, worse access to in-hospital services, less specialist healthcare utilization, less access to pain medications and inadequate end-of-life quality of care.
DISCUSSION
Limitations of this work include the exclusion of qualitative research, no assessment of publication bias, selection performed by only one reviewer, results from high-income countries only, no meta-analysis and a high risk of bias in 15% of included studies. In spite of these limitations, our results show that PwD often experience severe disparities in cancer care with less guideline-consistent care and higher mortality than people without disabilities. These findings raise urgent questions about how to ensure equitable care for PwD; in order to prevent avoidable morbidity and mortality, cancer care programs need to be evaluated and urgently improved, with specific training of clinical staff, more disability inclusive research, better communication and shared decision-making with patients and elimination of physical, social and cultural barriers.
Topics: Adult; Humans; Delivery of Health Care; Hospitalization; Pain; Disabled Persons; Neoplasms; Observational Studies as Topic
PubMed: 38091337
DOI: 10.1371/journal.pone.0285146 -
Journal of Neurology Sep 2023Upper limb function is one of the most affected domains in people with multiple sclerosis (PwMS), as self-reported by 50% of patients. Heterogeneous results have been... (Meta-Analysis)
Meta-Analysis Review
Upper limb function is one of the most affected domains in people with multiple sclerosis (PwMS), as self-reported by 50% of patients. Heterogeneous results have been found about the correlation between objective and subjective upper limb function. The aim of the present study is to perform a systematic review and meta-analysis of studies presenting data on the strength of association between the gold standard for 9-Hole Peg Test scores and Patient-Reported Outcome Measures (PROMs) of manual ability. Primary research studies including assessments of 9-Hole Peg Test scores and Patient-Reported Outcome Measures were searched in Scopus, Web of Science, and PubMed. Meta analytical calculations were performed using a random-effects model. We retrieved n = 27 studies including n = 75 distinct effect sizes (N of subjects = 3263). The central tendency analysis showed a strong correlation between 9-HPT scores and PROMs (r = 0.51, 95% CI [0.44, 0.58]). Moderator analysis showed the effect size to be significantly larger in studies with a mean or median EDSS level indicating severe disability. The publication bias hypothesis was not supported; instead, we noted that studies based on larger samples also tend to report stronger effect sizes. Results of the study indicate that the correlation between 9-HPT and PROMs is strong, although the constructs measured by these instrument does not fully overlap. The correlation between 9-HPT and PROMs was stronger in larger studies and when samples include a sizeable subgroup of PwMS with severe disability, pointing out the importance of sample diversity.
Topics: Humans; Multiple Sclerosis; Disability Evaluation; Upper Extremity; Disabled Persons; Patient Reported Outcome Measures
PubMed: 37294322
DOI: 10.1007/s00415-023-11801-3 -
Adapted Physical Activity Quarterly :... Jan 2024Physical activity (PA) in the early years is foundational for growth and development and associated with numerous health benefits. However, the prevalence of PA... (Review)
Review
Physical activity (PA) in the early years is foundational for growth and development and associated with numerous health benefits. However, the prevalence of PA participation among the pediatric population with disabilities is less clear. This systematic review aimed to synthesize the existing literature on PA levels of young children (0-5.99 years) with disabilities. Empirical quantitative studies were collected from seven databases and reference hand searching; 21 studies were included in the review. PA levels varied widely based on disability type and measurement strategies, but overall, PA levels were low. Future research should address the underrepresentation of measurement and reporting of the PA levels of young children with disabilities.
Topics: Child; Humans; Child, Preschool; Disabled Children; Exercise
PubMed: 37391195
DOI: 10.1123/apaq.2022-0100 -
Autism in Adulthood : Challenges and... Sep 2023While many studies have examined where and with whom autistic people live, very few have looked at autistic people's experience of moving home. Choosing where to live,... (Review)
Review
BACKGROUND
While many studies have examined where and with whom autistic people live, very few have looked at autistic people's experience of moving home. Choosing where to live, and being able to move residence, could be important for autonomy, and we therefore undertook a systematic review to identify studies about autistic adults' experience of moving home.
METHODS
We entered search terms relevant to autism and moving home into six databases and Google Scholar. After screening the titles and abstracts, we identified a final set of articles and screened the full text. We then checked the reference lists for potentially relevant articles; then, we conducted a search for articles that cited our final set of articles. Three raters assessed each included article for methodological quality.
RESULTS
The search strategy identified a total of 311 articles (initial search, ancestry searching, articles from other sources). After deduplication, we screened a total of 165 articles for eligibility. A final set of seven articles was identified. Our narrative synthesis of the articles suggests that both autistic people and the relatives of autistic people think living independently is a source of positive personal development. However, autistic people reported that poor employment prospects impacted on their financial independence and hence independent living. Parents highlighted concerns about their offspring's personal care, safety, and the difficulty of navigating the housing system for those autistic people with co-occurring intellectual disability.
CONCLUSIONS
Taken together, our review suggests that autistic people and those who care for them have a positive view of independent living and are aware of the barriers to achieving this. Our review highlights a gap in the understanding of autistic adults' experience of moving home. We briefly describe our ongoing research project [the "Moving (as an) Autistic Person" project] exploring autistic people's experiences of moving house.
PubMed: 37663439
DOI: 10.1089/aut.2022.0016 -
The Journal of Prevention of... 2024Alzheimer's disease (AD) is the most common neurodegenerative disease worldwide, and an updated quantification of its impact on morbidity, disability, and mortality is...
BACKGROUND
Alzheimer's disease (AD) is the most common neurodegenerative disease worldwide, and an updated quantification of its impact on morbidity, disability, and mortality is warranted. We conducted a systematic literature review, focusing on the past decade, to characterize AD and assess its impact on affected individuals.
METHODS
Searches of Embase, MEDLINE, and the Cochrane Library were conducted on August 7, 2020 and updated on November 10, 2021. Observational studies from any country reporting incidence, prevalence, comorbidities, and/or outcomes related to disability and mortality/life expectancy, in people with mild cognitive impairment (MCI) due to AD, or mild, moderate, or severe AD dementia, were considered relevant.
RESULTS
Data were extracted from 88 studies (46 incidence/prevalence; 44 comorbidities; 25 mortality-/disability-related outcomes), mostly from Europe, the USA, and Asia. AD dementia diagnosis was confirmed using biomarkers in only 6 studies. Estimated 5-year mortality in AD was 35%, and comorbidity prevalence estimates varied widely (hypertension: 30.2-73.9%; diabetes: 6.0-24.3%; stroke: 2.7-13.7%). Overall, people with AD dementia were more likely to have cardiovascular disease or diabetes than controls, and 5-year mortality in people with AD dementia was double that in the age- and year-matched general population (115.0 vs 60.6 per 1,000 person-years).
CONCLUSIONS
AD is associated with excess morbidity and mortality. Future longitudinal studies of population aging, incorporating biomarker assessment to confirm AD diagnoses, are needed to better characterize the course of MCI due to AD and AD dementia.
Topics: Humans; Alzheimer Disease; Neurodegenerative Diseases; Dementia; Comorbidity; Diabetes Mellitus; Cost of Illness
PubMed: 38230722
DOI: 10.14283/jpad.2023.61 -
The Cochrane Database of Systematic... Jul 2023Chronic pain is a major health and socioeconomic burden, which is prevalent in children and adolescents. Among the most widely used interventions in children and... (Review)
Review
BACKGROUND
Chronic pain is a major health and socioeconomic burden, which is prevalent in children and adolescents. Among the most widely used interventions in children and adolescents are physical activity (including exercises) and education about physical activity.
OBJECTIVES
To evaluate the effectiveness of physical activity, education about physical activity, or both, compared with usual care (including waiting-list, and minimal interventions, such as advice, relaxation classes, or social group meetings) or active medical care in children and adolescents with chronic musculoskeletal pain.
SEARCH METHODS
We searched CENTRAL, MEDLINE, Embase, CINAHL, PsycINFO, PEDro, and LILACS from the date of their inception to October 2022. We also searched the reference lists of eligible papers, ClinicalTrials.gov, and the World Health Organization (WHO) International Clinical Trials Registry Platform.
SELECTION CRITERIA
We included randomised controlled trials (RCTs) that compared physical activity or education about physical activity, or both, with usual care (including waiting-list and minimal interventions) or active medical care, in children and adolescents with chronic musculoskeletal pain.
DATA COLLECTION AND ANALYSIS
Two review authors independently determined the eligibility of the included studies. Our primary outcomes were pain intensity, disability, and adverse events. Our secondary outcomes were depression, anxiety, fear avoidance, quality of life, physical activity level, and caregiver distress. We extracted data at postintervention assessment, and long-term follow-up. Two review authors independently assessed risk of bias for each study, using the RoB 1. We assessed the overall certainty of the evidence using the GRADE approach. We reported continuous outcomes as mean differences, and determined clinically important differences from the literature, or 10% of the scale.
MAIN RESULTS
We included four studies (243 participants with juvenile idiopathic arthritis). We judged all included studies to be at unclear risk of selection bias, performance bias, and detection bias, and at high risk of attrition bias. We downgraded the certainty of the evidence for each outcome to very low due to serious or very serious study limitations, inconsistency, and imprecision. Physical activity compared with usual care Physical activity may slightly reduce pain intensity (0 to 100 scale; 0 = no pain) compared with usual care at postintervention (standardised mean difference (SMD) -0.45, 95% confidence interval (CI) -0.82 to -0.08; 2 studies, 118 participants; recalculated as a mean difference (MD) -12.19, 95% CI -21.99 to -2.38; I² = 0%; very low-certainty evidence). Physical activity may slightly improve disability (0 to 3 scale; 0 = no disability) compared with usual care at postintervention assessment (MD -0.37, 95% CI -0.56 to -0.19; I² = 0%; 3 studies, 170 participants; very low-certainty evidence). We found no clear evidence of a difference in quality of life (QoL; 0 to 100 scale; lower scores = better QoL) between physical activity and usual care at postintervention assessment (SMD -0.46, 95% CI -1.27 to 0.35; 4 studies, 201 participants; very low-certainty evidence; recalculated as MD -6.30, 95% CI -18.23 to 5.64; I² = 91%). None of the included studies measured adverse events, depression, or anxiety for this comparison. Physical activity compared with active medical care We found no studies that could be analysed in this comparison. Education about physical activity compared with usual care or active medical care We found no studies that could be analysed in this comparison. Physical activity and education about physical activity compared with usual care or active medical care We found no studies that could be analysed in this comparison.
AUTHORS' CONCLUSIONS
We are unable to confidently state whether interventions based on physical activity and education about physical activity are more effective than usual care for children and adolescents with chronic musculoskeletal pain. We found very low-certainty evidence that physical activity may reduce pain intensity and improve disability postintervention compared with usual care, for children and adolescents with juvenile idiopathic arthritis. We did not find any studies reporting educational interventions; it remains unknown how these interventions influence the outcomes in children and adolescents with chronic musculoskeletal pain. Treatment decisions should consider the current best evidence, the professional's experience, and the young person's preferences. Further randomised controlled trials in other common chronic musculoskeletal pain conditions, with high methodological quality, large sample size, and long-term follow-up are urgently needed.
Topics: Humans; Child; Adolescent; Chronic Pain; Musculoskeletal Pain; Arthritis, Juvenile; Chronic Disease; Exercise; Quality of Life
PubMed: 37439598
DOI: 10.1002/14651858.CD013527.pub2 -
Clinical Psychology Review Jun 2024Behaviours that challenge (BtC) are common in people with intellectual disability (ID) and associated with negative long-term outcomes. Reliable characterisation of BtC... (Meta-Analysis)
Meta-Analysis Review
Measurement tools for behaviours that challenge and behavioural function in people with intellectual disability: A systematic review and meta-analysis of internal consistency, inter-rater reliability, and test-retest reliability.
Behaviours that challenge (BtC) are common in people with intellectual disability (ID) and associated with negative long-term outcomes. Reliable characterisation of BtC and behavioural function is integral to person-centred interventions. This systematic review and meta-analytic study quantitatively synthesised the evidence-base for the internal consistency, inter-rater reliability, and test-retest reliability of measures of BtC and behavioural function in people with ID (PROSPERO: CRD42021239042). Web of Science, Embase, PsycINFO and MEDLINE were searched from inception to March 2024. Retrieved records (n = 3691) were screened independently to identify studies assessing eligible measurement properties in people with ID. Data extracted from 83 studies, across 29 measures, were synthesised in a series of random-effects meta-analyses. Subgroup analyses assessed the influence of methodological quality and study-level characteristics on pooled estimates. COSMIN criteria were used to evaluate the measurement properties of each measure. Pooled estimates ranged across measures: internal consistency (0.41-0.97), inter-rater reliability (0.29-0.93) and test-retest reliability (0.52-0.98). The quantity and quality of evidence varied substantially across measures; evidence was frequently unavailable or limited to a single study. Based on current evidence, candidate measures with the most evidence for internal consistency and reliability are discussed; however, continued assessment of measurement properties in ID populations is a key priority.
Topics: Humans; Intellectual Disability; Reproducibility of Results; Psychometrics
PubMed: 38718632
DOI: 10.1016/j.cpr.2024.102434