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Psychiatria Danubina Dec 2023Children with disabilities (CWDs) are often excluded from scientific research, but no precise data are available on their participation in Clinical Trials. The aim of... (Review)
Review
BACKGROUND
Children with disabilities (CWDs) are often excluded from scientific research, but no precise data are available on their participation in Clinical Trials. The aim of this study was to evaluate the rates of exclusion of CWDs from recent medical research.
SUBJECTS AND METHODS
The protocol of the study was designed according to Prisma-ScR guidelines. All completed interventional Clinical Trials registered on Clinicaltrials.gov between 2010 and 2020 related to the Leading 10 Level 3 causes of global Disability-adjusted life years (DALYs) for both sexes combined for all ages of the updated Global Burden of Disease Study 2019 were analysed. The exclusion criteria were considered explicit if related to the following categories: disability, physical impairment, cognitive impairment, behavioural or psychiatric disorders, language and communication impairment, sensory impairment. Any generic or poorly specified exclusion criteria or statements that left wide discretion to researchers were considered "implicit exclusion criteria". We assessed the appropriateness of explicit exclusion criteria in relation to the primary objectives of the trials and labelled them as "absolute", "relative", or "questionable".
RESULTS
The trials selected according to the inclusion criteria of the scoping review were 328; 166 (50.6%) were pediatric-only studies, and 162 (49.4%) trials comprising subjects of all ages. Explicit exclusion criteria were found in 82 trials (25%) and the disability category most frequently excluded was "Behavioural or psychiatric disorders" present in 46 trials (56.1%). Explicit exclusion criteria were considered "relative" in over 90% of the selected studies. Implicit exclusion criteria were present in 153 trials (46.6%) and the number and percentage of studies with at least one explicit or implicit exclusion criterion were 193 and 58.8% respectively.
CONCLUSIONS
This study highlights a high rate of exclusion of CWDs from medical research and the need for an inclusive approach that comprises the study design and any necessary adaptations for specific needs.
Topics: Male; Female; Humans; Child; Disabled Children; Biomedical Research; Cognitive Dysfunction; Research Design
PubMed: 37994056
DOI: No ID Found -
Midwifery May 2021Fifteen percent of the world's population has some form of disability, the most common form being a physical disability. Ten percent of women with disabilities are of... (Review)
Review
OBJECTIVE
Fifteen percent of the world's population has some form of disability, the most common form being a physical disability. Ten percent of women with disabilities are of childbearing age; however, because women with disabilities are often deemed less likely to have children, accessibility to maternity care is limited. Women with disabilities experience problems during pregnancy and childbirth due to physical barriers and barriers to information, problems with communication and the attitude of providers. A recent World Health Organization statement calls for more action, dialogue, research and advocacy on disrespectful treatment during childbirth. To give substance to this, an overview of the experiences of women with a physical disability is essential. Therefore, the aim of this systematic review is to identify and provide an overview of reported maternity care experiences of women with physical disabilities, including sensory disabilities.
DESIGN
This systematic review was conducted using a meta-aggregation approach for synthesis and the steps of the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) statement. The search strategy focused on qualitative studies in the databases PubMed, Embase and CINAHL. The Critical Appraisal Skills Programme checklist was used to evaluate methodological quality, and a best-evidence synthesis was performed.
FINDINGS
Of the 4,486 studies screened, ten were included. The methodological quality of the studies ranged from high to moderate. The results indicated that women experience barriers related to accessibility of facilities, adapted equipment, lack of knowledge, and healthcare providers' dismissals of their concerns and unwillingness to assist. In contrast, support has a positive influence on women's experiences.
KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE
There is evidence that women with physical disabilities continue to encounter barriers in accessing maternity care related to inaccessible care settings, lack of knowledge and the attitude of healthcare providers. Healthcare providers should be trained to be aware of women's special needs and to improve clinical practice.
Topics: Child; Disabled Persons; Female; Humans; Interviews as Topic; Maternal Health Services; Obstetrics; Parturition; Personal Satisfaction; Pregnancy; Qualitative Research
PubMed: 33636618
DOI: 10.1016/j.midw.2021.102938 -
The Journal of Pain Aug 2017Prominent clinical models of chronic pain propose a fundamental role of classical conditioning in the development of pain-related disability. If classical conditioning... (Review)
Review
UNLABELLED
Prominent clinical models of chronic pain propose a fundamental role of classical conditioning in the development of pain-related disability. If classical conditioning is key to this process, then people with chronic pain may show a different response to pain-related conditioned stimuli than healthy control subjects. We set out to determine whether this is the case by undertaking a comprehensive and systematic review of the literature. To identify studies comparing classical conditioning between people with chronic pain and healthy control subjects, the databases MEDLINE, PsychINFO, PsychARTICLES, Scopus, and CINAHL were searched using key words and medical subject headings consistent with 'classical conditioning' and 'pain.' Articles were included when: 1) pain-free control and chronic pain groups were included, and 2) a differential classical conditioning design was used. The systematic search revealed 7 studies investigating differences in classical conditioning between people with chronic pain and healthy control participants. The included studies involved a total of 129 people with chronic pain (fibromyalgia syndrome, spinal pain, hand pain, irritable bowel syndrome), and 104 healthy control participants. Outcomes included indices of pain-related conditioning such as unconditioned stimulus (US) expectancy and contingency awareness, self-report and physiological measures of pain-related fear, evaluative judgements of conditioned stimulus pleasantness, and muscular and cortical responses. Because of variability in outcomes, meta-analyses included a maximum of 4 studies. People with chronic pain tended to show reduced differential learning and flatter generalization gradients with respect to US expectancy and fear-potentiated eyeblink startle responses. Some studies showed a propensity for greater muscular responses and perceptions of unpleasantness in response to pain-associated cues, relative to control cues.
PERSPECTIVE
The review revealed preliminary evidence that people with chronic pain may exhibit less differential US expectancy and fear learning. This characteristic may contribute to widespread fear-avoidance behavior. The assumption that altered classical conditioning may be a predisposing or maintaining factor for chronic pain remains to be verified.
Topics: Animals; Chronic Pain; Conditioning, Classical; Disabled Persons; Humans; Learning Disabilities
PubMed: 28385510
DOI: 10.1016/j.jpain.2017.02.430 -
International Journal of Behavioral... Apr 2023To investigate the effect of in-person delivered behavioural interventions in people with multimorbidity and which behaviour change techniques (BCTs), targeting... (Meta-Analysis)
Meta-Analysis Review
BACKGROUND
To investigate the effect of in-person delivered behavioural interventions in people with multimorbidity and which behaviour change techniques (BCTs), targeting lifestyle behaviours, are associated with better outcomes.
METHODS
Systematic review of randomised controlled trials. We searched MEDLINE, EMBASE, CENTRAL, and CINAHL and screened reference list of reviews including people with multimorbidity, registries, and citation tracking of included studies. Meta-analyses using random-effects model to assess the effect of behavioural interventions and meta-regression analyses and effectiveness ratios to investigate the impact of mediators on effect estimates. Cochrane 'Risk of Bias Tool' 2.0 and the GRADE assessment to evaluate the overall quality of evidence.
RESULTS
Fourteen studies involving 1,378 people. Behavioural interventions had little to no effect on physical activity (standardised mean difference 0.38, 95% CI -0.12-0.87) and the effect on weight loss was uncertain (BMI mean difference -0.17, 95% CI -1.1-0.83) at the end-treatment follow-up. Small improvements were seen in health-related quality of life (SMD 0.29, 95% CI 0.17-0.42) and physical function (SMD 0.42, 95% CI 0.12-0.73), and moderate improvements were seen for depression symptoms (SMD -0.70, 95% CI -0.97-0.42). Studies using the BCTs 'action planning' and 'social support (practical)' reported greater physical activity and weight loss.
CONCLUSIONS
Behavioural interventions targeting lifestyle behaviours may improve health-related quality of life and physical function, and reduce depression, whereas little to no effect was achieved on physical activity and weight loss in people with multimorbidity. However, the evidence for physical activity and weight loss were of low quality and the end-treatment benefits diminished over time.
Topics: Humans; Quality of Life; Multimorbidity; Life Style; Behavior Therapy; Exercise
PubMed: 35484462
DOI: 10.1007/s12529-022-10092-8 -
Pediatric Blood & Cancer Sep 2015Pediatric, adolescent, and young adult survivors of bone sarcomas are at risk for poor quality of life (QOL). We conducted a systematic review and meta-analysis to... (Meta-Analysis)
Meta-Analysis Review
BACKGROUND
Pediatric, adolescent, and young adult survivors of bone sarcomas are at risk for poor quality of life (QOL). We conducted a systematic review and meta-analysis to summarize the literature describing QOL in this population and differences in QOL based on local control procedures.
PROCEDURE
Included studies described ≥5 patients <25 years old who had completed local control treatment for bone sarcoma, defined QOL as a main outcome, and measured it with a validated instrument. Data extraction and quality assessments were conducted with standardized tools. Meta-analyses compared QOL based on surgical procedure (limb-sparing vs. amputation) and were stratified by assessment type (objective physical function, clinician-assessed disability, patient-reported disability, and patient-reported QOL). Effect sizes were reported as the standard mean difference when multiple instruments were used within a comparison and weighted mean difference otherwise. All were weighted by inverse variance and modeled with random effects.
RESULTS
Twenty-two of 452 unique manuscripts were included in qualitative syntheses, eight of which were included in meta-analyses. Manuscripts were heterogeneous with respect to included patient populations (age, tumor type, time since treatment) and QOL instruments. Prospective studies suggested that QOL improves over time, and that female sex and older age at diagnosis are associated with poor QOL. Meta-analyses showed no differences in outcomes between patients who underwent limb-sparing versus amputation for local control.
CONCLUSION
QOL studies among children and AYAs with bone sarcoma are remarkably diverse, making it difficult to detect trends in patient outcomes. Future research should focus on standardized QOL instruments and interpretations.
Topics: Adolescent; Age Factors; Amputation, Surgical; Bone Neoplasms; Child; Child, Preschool; Cross-Sectional Studies; Disabled Persons; Female; Humans; Limb Salvage; Male; Prospective Studies; Quality of Life; Recovery of Function; Sarcoma; Self Report; Surveys and Questionnaires; Survivors; Young Adult
PubMed: 25820683
DOI: 10.1002/pbc.25514 -
International Journal of Environmental... Dec 2022This article reviews the peer-reviewed and grey literature published from January 1985 to November 2022 that has quantitatively evaluated the effects of personalized... (Review)
Review
This article reviews the peer-reviewed and grey literature published from January 1985 to November 2022 that has quantitatively evaluated the effects of personalized budgets for people with disabilities (PwDs), in terms of a range of benefit and cost outcomes. Benefit metrics of interest comprised measures of well-being, service satisfaction and use, quality of life, health, and unmet needs. A search was conducted using the PsycINFO, MEDLINE, CINAHL, ASSIA, and Social Care Online databases. Based on inclusion criteria and a quality assessment using the Downs and Black Checklist, a final count of 23 studies were identified for in-depth review. Given the heterogeneous nature of the studies, a narrative synthesis, rather than a formal meta-analysis, was undertaken. Taking the relatively scarce and often methodologically limited evidence base at face value, the findings suggest that-overall-personalized budget users tend to benefit in terms of well-being and service satisfaction outcomes, with the exception of mixed effects for people with mental health conditions. Only a minority of studies have investigated the cost-effectiveness or costs-only of personalized budgets, finding mixed results. Two out of the three cost-effectiveness studies find personal budgets to be more cost-effective than alternative options, meaning that the possibly higher costs of personalized budgets may be more than outweighed by additional benefits. Some evidence looking at service use and/or costs only also points to significant reductions in certain service use areas, which at least hints at the potential that personalized budgeting may-in some cases-entail reduced costs. Further research is needed to explore the generalizability of these conclusions and to better capture and understand the factors driving the observed heterogeneity in some of the results.
Topics: Humans; Budgets; Cost-Benefit Analysis; Disabled Persons; Mental Disorders; Quality of Life
PubMed: 36498302
DOI: 10.3390/ijerph192316225 -
The Cochrane Database of Systematic... Feb 2023Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), causes increasing physical impairment and disability. People with ALS/MND face huge... (Review)
Review
BACKGROUND
Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), causes increasing physical impairment and disability. People with ALS/MND face huge physical challenges, and the diagnosis can be a source of great psychological distress for both people with ALS/MND and their carers. In such a context, how news of the diagnosis is broken is important. At present, there are no systematic reviews of methods for informing people with ALS/MND of their diagnosis.
OBJECTIVES
To examine the effects and effectiveness of different methods for informing people of a diagnosis of amyotrophic lateral sclerosis/motor neuron disease (ALS/MND), including effects on the person's knowledge and understanding of their disease, its treatment, and care; and on coping and adjustment to the effects of ALS/MND, its treatment, and care.
SEARCH METHODS
We searched the Neuromuscular Specialised Register, CENTRAL, MEDLINE, Embase, PsycINFO, and two trials registers (February 2022). We contacted individuals or organisations to locate studies. We contacted study authors to obtain additional unpublished data.
SELECTION CRITERIA
We planned to include randomised controlled trials (RCTs) and quasi-RCTs of techniques for informing people with ALS/MND of their diagnosis. We planned to include adults (aged 17 years or over) with ALS/MND, according to the El Escorial criteria.
DATA COLLECTION AND ANALYSIS
Three review authors independently reviewed the results of the search to identify RCTs, and three review authors identified non-randomised studies to include in the discussion section. We planned that two review authors would independently extract data, and three would assess the risk of bias in any included trials.
MAIN RESULTS
We did not identify any RCTs that met our inclusion criteria.
AUTHORS' CONCLUSIONS
There are no RCTs that evaluate different communication strategies for breaking the bad news for people diagnosed with ALS/MND. Focused research studies are needed to assess the effectiveness and efficacy of different communication methods.
Topics: Adult; Humans; Amyotrophic Lateral Sclerosis; Motor Neuron Disease
PubMed: 36812393
DOI: 10.1002/14651858.CD007593.pub2 -
The Cochrane Database of Systematic... Sep 2015Approximately 30% of patients with epilepsy remain refractory to drug treatment and continue to experience seizures whilst taking one or more antiepileptic drugs (AEDs).... (Review)
Review
BACKGROUND
Approximately 30% of patients with epilepsy remain refractory to drug treatment and continue to experience seizures whilst taking one or more antiepileptic drugs (AEDs). Several non-pharmacological interventions that may be used in conjunction with or as an alternative to AEDs are available for refractory patients. In view of the fact that seizures in people with intellectual disabilities are often complex and refractory to pharmacological interventions, it is evident that good quality randomised controlled trials (RCTs) are needed to assess the efficacy of alternatives or adjuncts to pharmacological interventions.This is an updated version of the original Cochrane review (Beavis 2007) published in The Cochrane Library (2007, Issue 4).
OBJECTIVES
To assess data derived from randomised controlled trials of non-pharmacological interventions for people with epilepsy and intellectual disabilities.Non-pharmacological interventions include, but are not limited to, the following.• Surgical procedures.• Specialised diets, for example, the ketogenic diet, or vitamin and folic acid supplementation.• Psychological interventions for patients or for patients and carers/parents, for example, cognitive-behavioural therapy (CBT), electroencephalographic (EEG) biofeedback and educational intervention.• Yoga.• Acupuncture.• Relaxation therapy (e.g. music therapy).
SEARCH METHODS
For the latest update of this review, we searched the Cochrane Epilepsy Group Specialised Register (19 August 2014), the Cochrane Central Register of Controlled Trials (CENTRAL) via CRSO (19 August 2014), MEDLINE (Ovid, 1946 to 19 August 2014) and PsycINFO (EBSCOhost, 1887 to 19 August 2014).
SELECTION CRITERIA
Randomised controlled trials of non-pharmacological interventions for people with epilepsy and intellectual disabilities.
DATA COLLECTION AND ANALYSIS
Two review authors independently applied the inclusion criteria and extracted study data.
MAIN RESULTS
One study is included in this review. When two surgical procedures were compared, results indicated that corpus callosotomy with anterior temporal lobectomy was more effective than anterior temporal lobectomy alone in improving quality of life and performance on IQ tests among people with epilepsy and intellectual disabilities. No evidence was found to support superior benefit in seizure control for either intervention. This is the only study of its kind and was rated as having an overall unclear risk of bias. The previous update (December 2010) identified one RCT in progress. The study authors have confirmed that they are aiming to publish by the end of 2015; therefore this study (Bjurulf 2008) has not been included in the current review.
AUTHORS' CONCLUSIONS
This review highlights the need for well-designed randomised controlled trials conducted to assess the effects of non-pharmacological interventions on seizure and behavioural outcomes in people with intellectual disabilities and epilepsy.
Topics: Corpus Callosum; Epilepsy; Humans; Intelligence Tests; Persons with Mental Disabilities; Randomized Controlled Trials as Topic; Temporal Lobe
PubMed: 26355236
DOI: 10.1002/14651858.CD005502.pub3 -
BMJ Open Apr 2017Befriending is an emotional supportive relationship in which one-to-one companionship is provided on a regular basis by a volunteer. It is commonly and increasingly... (Meta-Analysis)
Meta-Analysis Review
OBJECTIVE
Befriending is an emotional supportive relationship in which one-to-one companionship is provided on a regular basis by a volunteer. It is commonly and increasingly offered by the voluntary sector for individuals with distressing physical and mental conditions. However, the effectiveness of this intervention on health outcomes is largely unknown. We aim to conduct a systematic review of the benefits of befriending.
DESIGN
Systematic review.
METHODS
A systematic search of electronic databases was conducted to identify randomised controlled trials and quasi-experimental trials of befriending for a range of physical and mental health indications including depression, anxiety, mental illness, cancer, physical illness and dementia. Main outcomes included patient-relevant and disease-specific outcomes, such as depression, loneliness, quality of life, self-esteem, social support and well-being.
RESULTS
A total of 14 trials (2411 participants) were included; 7 were judged at low risk of bias. Most trials showed improvement in symptoms associated with befriending but these associations did not reach statistical significance in all trials. Befriending was significantly associated with better patient-reported outcomes across primary measures (standardised mean difference 0.18 (95% CI, -0.002 to 0.36, I=26%, seven trials)). However, there was no significant benefit on single outcomes, including depression, quality of life, loneliness ratings, self-esteem measures, social support structures and well-being.
CONCLUSIONS
There was moderate quality evidence to support the use of befriending for the treatment of individuals with different physical and mental health conditions. This evidence refers to an overall improvement benefit in patient-reported primary outcomes, although with a rather small effect size. The current evidence base does not allow for firm conclusions on more specific outcomes. Future trials should hypothesise a model for the precise effects of befriending and use specified inclusion and outcome criteria.
Topics: Disabled Persons; Humans; Mental Health; Quality of Life; Self Concept; Social Support
PubMed: 28446525
DOI: 10.1136/bmjopen-2016-014304 -
Social Science & Medicine (1982) Jul 2022In many settler-colonial countries, Indigenous people do not access disability services at rates commensurate with disability prevalence. Existing research suggests that... (Review)
Review
In many settler-colonial countries, Indigenous people do not access disability services at rates commensurate with disability prevalence. Existing research suggests that services often do not reflect Indigenous values and social practices, impacting on accessibility. Furthermore, disability services have historically been implicated in processes of colonisation. There is an urgent need to decolonise disability services. Understanding Indigenous knowledge and experience of disability is a necessary step towards achieving this. We systematically reviewed the disability conceptualisations, practices and experiences of First Nations peoples of Australia. Twelve studies met inclusion criteria. There was a consensus among these studies that Western constructs of disability do not resonate with many First Nations people across Australia. The studies reported that many First Nations people conceptualise most disabilities as unremarkable conditions that reflect the normal range of human diversity, although some conditions may be associated with social stigma. Inclusive attitudes and practices of caregiving in First Nations families facilitate the participation of First Nations people with disabilities in family and community life. However, ableism and racism in broader society combine to exclude many First Nations peoples with disabilities from public spaces and from labour markets. Disability services regularly fail to reflect First Nations values and social practices, and can lead to further disempowerment and marginalisation due to diagnostic processes; displacement from country and communities; gendered discrimination; and poor relationships with service providers. We argue that intersectional experiences of colonialism, racism, ableism and sexism, particularly in disability services, can lead to the marginalisation of First Nations participants and families. The decolonisation of disability services requires services to embrace diverse First Nations values and practices associated with human capability, social participation and caregiving. Decolonising disability services also necessitates First Nations control of the governance of disability services and reform across service, organisational, systemic and conceptual levels.
Topics: Colonialism; Concept Formation; Disabled Persons; Humans; Indigenous Peoples; Population Groups
PubMed: 35617764
DOI: 10.1016/j.socscimed.2022.115047