-
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 -
American Journal of Obstetrics and... Jan 2020Women with disabilities are increasingly becoming pregnant, and growing evidence suggests maternal disability may be associated with increased risk for perinatal... (Meta-Analysis)
Meta-Analysis
BACKGROUND
Women with disabilities are increasingly becoming pregnant, and growing evidence suggests maternal disability may be associated with increased risk for perinatal complications.
OBJECTIVE
A systematic review and meta-analysis were undertaken to examine the association between maternal disabilities and risk for perinatal complications.
STUDY DESIGN
Medline, CINAHL, EMBASE, and PsycINFO were searched from inception to July 2018 for full-text publications in English on pregnancy, delivery, and postpartum complications in women with any disability and those with physical, sensory, and intellectual and developmental disabilities specifically. Searches were limited to quantitative studies with a comparison group of women without disabilities. Reviewers used standardized instruments to extract data from and assess the quality of included studies. Pooled odds ratios and 95% confidence intervals were generated using DerSimonian and Laird random effects models for outcomes with data available from ≥3 studies.
RESULTS
The review included 23 studies, representing 8,514,356 women in 19 cohorts. Women with sensory (pooled unadjusted odds ratio, 2.85, 95% confidence interval, 0.79-10.31) and intellectual and developmental disabilities (pooled unadjusted odds ratio, 1.10, 95% confidence interval, 0.76-1.58) had elevated but not statistically significant risk for gestational diabetes. Women with any disability (pooled unadjusted odds ratio, 1.45, 95% confidence interval, 1.16-1.82) and intellectual and developmental disabilities (pooled unadjusted odds ratio, 1.77, 95% confidence interval, 1.21-2.60) had increased risk for hypertensive disorders of pregnancy; risk was elevated but not statistically significant for women with sensory disabilities (pooled unadjusted odds ratio, 2.84, 95% confidence interval, 0.85-9.43). Women with any (pooled unadjusted odds ratio, 1.31, 95% confidence interval, 1.02-1.68), physical (pooled unadjusted odds ratio, 1.60, 95% confidence interval, 1.21-2.13), and intellectual and developmental disabilities (pooled unadjusted odds ratio, 1.29, 95% confidence interval, 1.02-1.63) had increased risk for cesarean delivery; risk among women with sensory disabilities was elevated but not statistically significant (pooled unadjusted odds ratio, 1.28, 95% confidence interval, 0.84-1.93). There was heterogeneity in all analyses, and 13 studies had weak-quality ratings, with lack of control for confounding being the most common limitation.
CONCLUSION
Evidence that maternal disability is associated with increased risk for perinatal complications demonstrates that more high-quality research is needed to examine the reasons for this risk and to determine what interventions could be implemented to support women with disabilities during the perinatal period.
Topics: Autism Spectrum Disorder; Cerebral Palsy; Comorbidity; Developmental Disabilities; Disabled Persons; Down Syndrome; Female; Fetal Alcohol Spectrum Disorders; Hearing Loss; Humans; Intellectual Disability; Neurodevelopmental Disorders; Obstetric Labor Complications; Pregnancy; Pregnancy Complications; Puerperal Disorders; Spinal Cord Injuries; Vision Disorders
PubMed: 31306650
DOI: 10.1016/j.ajog.2019.07.015 -
PloS One 2022Existing evidence indicates that prevalence of violence against women with disability is elevated compared to women without disability. We conducted a scoping review...
INTRODUCTION
Existing evidence indicates that prevalence of violence against women with disability is elevated compared to women without disability. We conducted a scoping review with a focus on measurement to assess the forms of measurement and study design utilized to explore the intersection of violence against women with disabilities, and to identify strengths and limitations in current approaches to measuring violence against women with disabilities. This scoping review is designed to inform current debates and discussions regarding how to generate evidence concerning violence against women with disabilities.
METHODS AND RESULTS
We conducted systematic searches of the following databases: PubMed, PsycINFO, Embase, CINAHL, PILOTS, ERIC, Social Work Abstracts, International Bibliography of the Social Sciences, Social Services Abstracts, ProQuest Criminal Justice, and Dissertations & Theses Global, and conducted structured searches of national statistics and surveys and grey literature available on-line. We identified 174 manuscripts or reports for inclusion. n = 113 manuscripts or reports utilized acts-specific measurement of violence. In terms of measurement of disability, we found that amongst the included manuscripts and reports, n = 75 utilized measures of functioning limitations (n = 20 of these were Washington Group questions), n = 15 utilized a single question approach and n = 67 defined participants in the research as having a disability based on a diagnosis or self-report of a health condition or impairment.
DISCUSSION
This scoping review provides a comprehensive overview of measurement of violence against women with disabilities and measurement of violence within disability-focused research. We identified several important gaps in the evidence, including lack of sex and disability disaggregation, limited evidence concerning adaptation of data collection methods to ensure accessibility of research activities for women with disabilities, and limited evidence concerning differential relationships between types of disability and violence exposure. This scoping review provides directions for sub-analyses of the included studies and further research to address gaps in evidence.
Topics: Disabled Persons; Female; Humans; Prevalence; Violence
PubMed: 35100320
DOI: 10.1371/journal.pone.0263020 -
International Journal of MS Care 2023The Patient-Determined Disease Steps (PDDS) scale is a patient-reported measure of disability used by at least 3 North American multiple sclerosis (MS) registries. We...
BACKGROUND
The Patient-Determined Disease Steps (PDDS) scale is a patient-reported measure of disability used by at least 3 North American multiple sclerosis (MS) registries. We conducted a systematic review of the psychometric properties of the PDDS scale as part of a harmonization effort related to disability measures used in MS registries.
METHODS
We searched the EMBASE, Ovid Medline, Scopus, Cochrane Database of Systematic Reviews, CENTRAL, CINAHL Plus, and ClinicalTrials.gov databases from database inception through July 28, 2020. Two reviewers independently screened abstracts and full-text reports for study inclusion and data extraction and assessed study quality and risk of bias. We included studies that assessed the validity or reliability of the PDDS scale. We conducted a meta-analysis to quantitatively summarize the findings.
RESULTS
From the 2476 abstracts screened, 234 articles underwent full-text review, of which 5 met the inclusion criteria. These studies assessed criterion validity, construct validity, and test-retest reliability. In all studies, criterion validity was assessed by correlating the PDDS scale score with the Expanded Disability Status Scale score (pooled r = 0.73; 95% CI, 0.66-0.79). Test-retest reliability was high (pooled intraclass correlation coefficient = 0.96; 95% CI, 0.92-0.99).
CONCLUSIONS
In this systematic review, the PDDS scale demonstrated criterion and construct validity for assessing disability in individuals with MS who have mild to moderate disabilities. This review also supports the test-retest reliability of the PDDS scale, although further studies with larger samples are needed.
PubMed: 36711220
DOI: 10.7224/1537-2073.2021-102 -
BMC Medical Education May 2023Despite the increasing global population of individuals with intellectual and developmental disabilities (IDD), this population remains especially vulnerable to health...
BACKGROUND
Despite the increasing global population of individuals with intellectual and developmental disabilities (IDD), this population remains especially vulnerable to health disparities through several factors such as a lack of access to sufficient medical care and poor determinants of health. To add, numerous studies have shown that healthcare professionals are still insufficiently prepared to support this population of patients. This review synthesizes the literature on current pre-graduate IDD training programs across healthcare professions with the goal of informing the creation of evidence-based curricula.
METHODS
Four major databases were searched for current pre-graduate IDD training interventions for healthcare professionals. The Preferred Reporting Items for Systematic Reviews and Meta-Analysis flow diagram and the Best Evidence Medical Educations systematic review guide were used to frame our collection and analysis.
RESULTS
Of the 8601 studies screened, 32 studies were identified, with most studies involving medical students (50%). Of note, 35% of studies were interprofessional. Most interventions utilized multiple pedagogical methods with a majority including clinical experiences (63%) followed by theoretical teaching (59%). Kirkpatrick levels showed 9% were level 0, 6% were level 1, 31% were level 2A, 31% were level 2B, 19% were level 3, 3% were level 4A, and none were level 4B.
CONCLUSIONS
There is a paucity of formally evaluated studies in pre-graduate health professional IDD education. As well, there are a lack of longitudinal learning opportunities and integration into formal curriculum. Strengths identified were the use of multimodal approaches to teaching, including interprofessional approaches to optimize team competencies.
Topics: Child; Humans; Developmental Disabilities; Curriculum; Learning; Education, Medical; Clinical Competence; Intellectual Disability
PubMed: 37170246
DOI: 10.1186/s12909-023-04259-4 -
Children (Basel, Switzerland) Dec 2021People with intellectual disability have unmet health needs and experience health inequalities. There is limited literature regarding cancer care for children,... (Review)
Review
What Are the Psycho-Social and Information Needs of Adolescents and Young Adults Cancer Care Consumers with Intellectual Disability? A Systematic Review of Evidence with Recommendations for Future Research and Practice.
People with intellectual disability have unmet health needs and experience health inequalities. There is limited literature regarding cancer care for children, adolescents, and young adults (AYA) with intellectual disability despite rising cancer incidence rates in this population. This systematic review aimed to identify the psycho-social and information support needs of AYA cancer care consumers with intellectual disability to generate recommendations for future research and cancer care service delivery enhancement. We searched eight databases yielding 798 articles. Following abstract and full-text review, we identified 12 articles meeting our inclusion criteria. Our three themes related to communication and accessible information; supports and system navigation, cancer service provider training, and reasonable adjustments. There was a lack of user-friendly, accessible information about cancer and screening programs available. Both paid and family carers are critical in accessing cancer supports, services, and screening programs for AYA with intellectual disability. Ongoing training should be provided to healthcare professionals regarding the importance of care screening for AYAs with intellectual disability. This review recommends that AYA with intellectual disability and their family carers be involved in developing tailored cancer services. This should focus on enabling inclusive screening programs, accessible consent, and challenging the enduring paternalism of support services via training and appropriate communication tools.
PubMed: 34943314
DOI: 10.3390/children8121118 -
Journal of Intellectual Disability... Nov 2022Complicated grief has been identified as a phenomenon in the general population, and there is an increasing body of research investigating complicated grief in people... (Review)
Review
BACKGROUND
Complicated grief has been identified as a phenomenon in the general population, and there is an increasing body of research investigating complicated grief in people with intellectual disability. The aim of this study is to synthesise this existing knowledge from research published between 1999 and 2022.
METHODS
A structured systematic review using PRISMA guidelines was conducted, which searched three commonly used databases (Medline, PsycINFO and CINAHL) for research on the topic of bereavement and intellectual disability. The articles identified in this search were screened to identify those that addressed the issue of 'complicated grief', with all abstracts and subsequent full texts reviewed by two researchers.
RESULTS
In total, 179 abstracts were initially identified, with 34 articles eligible for full text screening and 18 papers reaching criteria for inclusion. Data relating to the studies' objectives were extracted under the headings of definition, defining principles, signs and symptoms, risk factors and treatments for complicated grief in intellectual disability. Thematic analysis of the extracted data was performed to identify key themes.
CONCLUSIONS
This review highlights that people with intellectual disability are likely to experience complicated grief reactions and that complicated grief is both underestimated and a clinically significant condition for people with intellectual disability. Future research should work to clarify diagnostic criteria and identify appropriate interventions.
Topics: Bereavement; Grief; Humans; Intellectual Disability; Risk Factors
PubMed: 36042575
DOI: 10.1111/jir.12973 -
Chiropractic & Manual Therapies Dec 2021Corticosteroid injection and dry needling have been used in the treatment of musculoskeletal conditions, but it is unclear which intervention is the most effective. The... (Review)
Review
BACKGROUND
Corticosteroid injection and dry needling have been used in the treatment of musculoskeletal conditions, but it is unclear which intervention is the most effective. The purpose of this study was to compare the effects of corticosteroid injection and dry needling for musculoskeletal conditions at short-, medium-, and long-term follow-up.
METHODS
Electronic databases were searched up to 31 October 2021. Two researchers independently screened titles, abstracts and full-text articles. Randomized clinical trials (RCTs) that investigated the effectiveness of dry needling compared to corticosteroid injection in patients over 18 years with a musculoskeletal condition were included in the review. The studies had to report pain and/or disability as outcome. Risk of bias was assessed by using the revised Cochrane Collaboration tool (RoB 2.0). Quality of evidence was evaluated by using the GRADE approach.
RESULTS
Six studies were included (n = 384 participants). Four musculoskeletal conditions were investigated. There is very low-quality evidence that CSI is superior to DN for reducing heel pain (plantar fasciitis) and lateral elbow pain at short- and medium-term follow-up, but not for myofascial pain and greater trochanteric pain. There is very low-quality evidence that DN is more effective than CSI at long-term follow-up for reducing pain in people with plantar fasciitis and lateral epicondylitis. Very low-certainty evidence shows that there is no difference between DN and CSI for disability at short-term follow-up. One study showed that CSI is superior to DN at medium-term follow-up and another observed that DN is superior to CSI for reducing disability at long-term.
CONCLUSIONS
There are no differences between DN and CSI in pain or disability for myofascial pain and greater trochanteric pain syndrome. Very-low certainty evidence suggests that CSI is superior to DN at shorter follow-up periods, whereas DN seems to be more effective than CSI at longer follow-up durations for improving pain in plantar fasciitis and lateral epicondylitis. Large RCTs with higher methodological quality are needed in order to draw more incisive conclusions.
PROSPERO REGISTRATION NUMBER
CRD42020148650.
Topics: Adrenal Cortex Hormones; Disabled Persons; Dry Needling; Humans; Musculoskeletal Pain; Pain Measurement
PubMed: 34857021
DOI: 10.1186/s12998-021-00408-y -
International Journal of Nursing... Dec 2023Snoezelen focuses on multisensory stimulation in an adapted environment and was originally developed for people with severe and profound intellectual (and multiple)... (Review)
Review
BACKGROUND
Snoezelen focuses on multisensory stimulation in an adapted environment and was originally developed for people with severe and profound intellectual (and multiple) disabilities. Snoezelen has been used for many years with various target groups and for different purposes. Variation in its application has resulted in a lack of understanding of snoezelen's application characteristics and of how they may relate to effects.
OBJECTIVE
The aim of this review was to provide an overview of the application and effects of snoezelen in people with intellectual disability or dementia in order to analyse the relationship between application characteristics and effects.
DESIGN
A systematic review.
METHODS
Five databases were searched for snoezelen studies that took place in a specially adapted environment. The methodological quality of the included studies was assessed using the Mixed Methods Appraisal Tool. The application characteristics (that is, the stimuli used, environment, and support given) and the effects were extracted. Reported effects were categorized into different human functioning dimensions using the model of intellectual disabilities of the American Association on Intellectual and Developmental Disabilities.
RESULTS
In total, 62 studies involving people with intellectual disability ( = 30) or dementia ( = 32) were included. An overview of snoezelen used in other target groups ( = 24) is provided as supplementary material. Details on the application of snoezelen were often lacking. A total of 10 application characteristics (for example, frequency, role of the support person) were extracted. All studies reported the presence of a support person ( = 62; 100%). Effects were found in all five human functioning dimensions. The most-reported effects (61.3% overall) related to mental health, such as a reduction in challenging behaviour and improved mood. In a minority of studies ( = 10, 16.1%), effects on the support person were also reported. Due to limited details about the application of snoezelen and the large variation in measured effects, analysing the relationship between these was impossible.
CONCLUSIONS
The majority of studies lacked details on application characteristics during snoezelen. Reported effects varied, although most related to mental health. Future research should analyse in detail the relationship between application and effects.
PubMed: 38746578
DOI: 10.1016/j.ijnsa.2023.100152 -
Cancers Feb 2023The purpose of our study is to examine whether cancer and treatments are associated with job loss or changes in employment status. Eight prospective studies were... (Review)
Review
The purpose of our study is to examine whether cancer and treatments are associated with job loss or changes in employment status. Eight prospective studies were included in the systematic review and meta-analysis, with a population aged 18-65 years, analyzing treatment regimen and psychophysical and social status in post-cancer follow-up of at least 2 years. In the meta-analysis, a comparison was made between recovered unemployed cases and cases from a standard reference population. Results are summarized graphically using a forest plot. We showed that cancer and subsequent treatment are risk factors for unemployment with an overall relative risk of 7.24 (lnRR: 1.98, 95% CI: 1.32-2.63) or for change in employment status. Individuals undergoing chemotherapy and/or radiation treatment and those with brain and colorectal cancers are more likely to develop disabilities that negatively affect the risk of unemployment. Finally, variables such as low level education, female sex, older age, and being overweight before starting therapy are associated with higher risk of unemployment. In the future, it will be necessary for people with cancer to have access to specific health, social welfare, and employment support programs. In addition, it is desirable that they become more involved in their choice of therapeutic treatment.
PubMed: 36900304
DOI: 10.3390/cancers15051513