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European Journal of Physical and... Oct 2023The International Classification of Functioning, Disability, and Health (ICF), developed by the World Health Organization, is a classification framework that focuses on...
INTRODUCTION
The International Classification of Functioning, Disability, and Health (ICF), developed by the World Health Organization, is a classification framework that focuses on the health and functioning of people with disabilities. As part of an ICF Core Set development, four studies need to be conducted, one of which is a systematic review. This study presents part 1 of the systematic review that aims to describe the outcome measures identified in the literature related to functioning in individuals with deafblindness.
EVIDENCE ACQUISITION
The research team screened articles from eight scientific databases, three journals, and Google Scholar (March 2011 to September 2022). Articles were included if they studied individuals with deafblindness aged 18 and older. Studies that examined genetics or laboratory experiments involving animals were excluded. Data were extracted into a logbook with key descriptors such as study location and design, age of study population, and instruments/outcome measures used, which were further categorized into one of the following types: 1) standardized; 2) patient-reported measures, standardized (PT-S); 3) patient-reported measures, not standardized (PT-not S); 4) health professional, reported measures, standardized (HP-S); 5) Technical measures; 6) other measures (parent-reported standardized and laboratory measures).
EVIDENCE SYNTHESIS
The review included 147 studies, of which most were conducted in Europe (47.6%) and North America (27.9%). Of the 314 identified outcome measures, 57 were Standardized, 59 were Patient Reported-Standardized (PT-S), 178 were patient reported non-standardized (PT-Not S) variables, 11 were health professional reported, standardized, five were technical, and four were classified as other measures.
CONCLUSIONS
Most instruments measured functioning in daily activities and the mental health of individuals with deafblindness. Three deafblind-specific instruments were identified in this study, highlighting the need for more deafblind-specific instruments to be developed and utilized in research.
Topics: Humans; International Classification of Functioning, Disability and Health; Deaf-Blind Disorders; Disabled Persons; Outcome Assessment, Health Care; World Health Organization; Disability Evaluation; Activities of Daily Living
PubMed: 37458491
DOI: 10.23736/S1973-9087.23.07890-5 -
The Gerontologist Apr 2024Communication partner training (CPT) is essential in dementia care. Despite families being the largest group of community carers, previous reviews primarily focused on...
BACKGROUND AND OBJECTIVES
Communication partner training (CPT) is essential in dementia care. Despite families being the largest group of community carers, previous reviews primarily focused on formal carers. This study aimed to understand the characteristics and effectiveness of CPT for families of people with dementia.
RESEARCH DESIGN AND METHODS
The systematic review included intervention/protocol studies on dementia CPT for families, excluding formal carers and programs not focused on communication. CINAHL, PsycINFO, SpeechBITE, Medline, SCOPUS, and Embase were searched between November 30 and December 6, 2021. After deduplication, 3,172 records were screened. Quality assessment used JBI Critical Appraisal tools and the Mixed Methods Appraisal Tool. Data synthesis utilized three reporting tools, the International Classification of Functioning, Disability, and Health, and content analysis.
RESULTS
Of 30 studies (27 programs), there were 10 quasi-experimental, 5 RCTs, 4 mixed methods, 4 case studies, 4 qualitative, and 2 protocols. Studies were published between 1998 and 2021 and included 671 family members. Characteristics varied with 7/27 programs including consumers during creation and one program including telehealth. One study included all reporting tool criteria. Programs typically used 4 intervention functions, with 12/27 programs addressing 3 behavior change areas. 33/74 outcome measures targeted the "Environment" of the person with dementia. Studies showed positive improvements in communication skills and knowledge, with mixed results on behavior/psychosocial outcomes. Qualitative results identified improvements in conversation and attitudes.
DISCUSSION AND IMPLICATIONS
CPT for families improves communication outcomes, however, quality of studies varied significantly. Future research should address gaps in telehealth, consumer involvement, and intervention descriptions.
Topics: Humans; Dementia; Caregivers; Communication; Outcome Assessment, Health Care; Family
PubMed: 37439771
DOI: 10.1093/geront/gnad095 -
International Journal of Environmental... Jun 2023Studies show that physical activity, exercise, or sport reduces depressive symptoms in the general population. However, little is known about its effects on individuals... (Meta-Analysis)
Meta-Analysis Review
Studies show that physical activity, exercise, or sport reduces depressive symptoms in the general population. However, little is known about its effects on individuals with disabilities. Thus, this systematic review with meta-analysis aims to verify the effects of this practice on depressive symptoms in individuals with disabilities. The Pubmed, Web of Science, Scopus, and SportDiscus databases were used, with several descriptors and Boolean operators. A total of 1509 studies were identified through searching the databases. Studies that met the eligibility criteria were subsequently assessed for their methodological quality (Downs and Black scale), and a meta-analysis was performed. The -values that were obtained to test the null hypothesis, which states that there is no difference in means, showed = -2.294 and a corresponding -value = 0.022. We can, therefore, reject the null hypothesis in the sense that exercise seems to reduce depressive symptoms in individuals with disabilities. In sum, participants from the intervention group presented more probability of reducing depressive symptoms when compared to the control group (approximately -1.4 standard differences in means; 95% CI -2.602 to -0.204).
Topics: Humans; Depression; Exercise; Sports; Disabled Persons; Control Groups
PubMed: 37372720
DOI: 10.3390/ijerph20126134 -
BMJ Open Quality Jun 2023Patient engagement (PE) is required to improve future healthcare services. PE in the development and delivery of healthcare services is likely to be complex but is...
BACKGROUND
Patient engagement (PE) is required to improve future healthcare services. PE in the development and delivery of healthcare services is likely to be complex but is scarcely described.
OBJECTIVES
The objective of this scoping review was to summarise primary studies on mesolevel PE regarding structure, process and outcomes. More specifically, the aim was to explore barriers and facilitators to successful PE, how persons are engaged in the process and summarise reported consequences.
METHOD
A systematic scoping review was conducted, searching the MEDLINE, EMBASE, Cochrane and PsycINFO databases. Primary studies, published between 7 July 2005 and 4 October 2022, were considered for inclusion. Two reviewers extracted data about PE (eg, attributes of PE settings, facilitators and barriers, and outcomes to PE) and the first author coded the extracted data into structural, processual and outcome themes.
RESULTS
Of 8588 identified records, 37 studies were eligible. Most of the included studies were conducted in Europe (n=19; 51%) and North America (n=13; 35%). Structures that ensure sufficient stakeholder representativeness and PE knowledge through education may facilitate the PE process further, regardless of the environmental setting. Interpersonal relationships with uneven power dynamics were reported as noteworthy processual barriers to meaningful PE, while clearly described roles and tasks were reported as important facilitators. In contrast to hard outcomes with operationalised PE effects, the most noteworthy outcomes of PE were reported as soft processual consequences such as patient representatives improving their self-esteem and feeling valued.
CONCLUSIONS
Unfortunately, there is a dearth of studies exploring hard and operationalised PE outcomes on healthcare services and patients receiving healthcare. The PE process may be facilitated by dedicated finances to PE education and by ensuring sufficient stakeholder representativeness.
Topics: Humans; Patient Participation; Delivery of Health Care
PubMed: 37369560
DOI: 10.1136/bmjoq-2023-002309 -
Sports Health 2024Participation in sports is associated with a risk of sports-related health problems. For athletes with an impairment, sports-related health problems further burden an... (Review)
Review
CONTEXT
Participation in sports is associated with a risk of sports-related health problems. For athletes with an impairment, sports-related health problems further burden an already restricted lifestyle, underlining the importance of prevention strategies in para-sports.
OBJECTIVE
To provide a comprehensive overview with quality assessment of the literature on sports-related health problems, their etiology, and available preventive measures in para-sports following the steps of the Sequence of Prevention.
DATA SOURCES
A literature search (in PubMed, Embase, SPORTDiscus, CINAHL and the Cochrane Library) was performed up to December 8, 2021, in collaboration with a medical information specialist.
STUDY SELECTION
The search yielded 3006 articles, of which 64 met all inclusion criteria.
STUDY DESIGN
Systematic review with quality assessment.
LEVEL OF EVIDENCE
Level 3.
DATA EXTRACTION
Two independent researchers carried out the screening process and quality assessment. One researcher extracted data, and the Sequence of Prevention categorized evidence.
RESULTS
A total of 64 studies were included, of which 61 reported on the magnitude and risk factors of sports-related health problems, while only 3 reported on the effectiveness of preventive measures. Of these, 30 studies were of high quality. Most studies (84%) included elite-level athletes. The reported injury incidence varied widely between sports (0-91 per 1000 athlete days) and impairment categories (1-50 per 1000 athlete days). The same applies to illness incidence with regard to different sports (3-49 per 1000 athlete days) and impairment categories (6-14 per 1000 athlete days).
CONCLUSION
This review shows the current vast range of reported sport-related health problems in para-sports. There is limited evidence concerning the severity of these sports-related health problems and inconclusive evidence on the risk factors. Lastly, the evidence regarding the development and effectiveness of preventive measures for para-athletes is sparse.
Topics: Humans; Athletic Injuries; Risk Factors; Para-Athletes; Incidence; Sports for Persons with Disabilities
PubMed: 37337621
DOI: 10.1177/19417381231178534 -
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 -
Trauma, Violence & Abuse Apr 2024Women with disability experience significantly more violence and abuse than their nondisabled peers. Efforts to implement, evaluate, and scale-up strategies to prevent...
Women with disability experience significantly more violence and abuse than their nondisabled peers. Efforts to implement, evaluate, and scale-up strategies to prevent violence against women are rapidly expanding, but we know less about "what works" to prevent violence against women with disability. While secondary and tertiary prevention aim to identify violence early and prevent further occurrence, this review focuses on primary prevention. In the disability services sector, primary prevention is sometimes referred to as safeguarding and covers a range of activities that aim to address the underlying determinants of violence to prevent it from happening in the first place. The aim of this review is to identify and synthesize research on evaluated interventions addressing the primary prevention of violence against women with disability and explore evidence about their quality and effectiveness. A systematic search across the bibliographic databases of Medline, CINAHL, Embase, and PsychInfo for peer-reviewed literature published in English on or after January 1, 2010, yielded 483 papers of potential interest. Twelve studies met the inclusion criteria and were considered for review. Data were extracted and the quality of the studies was assessed using the Quality Assessment Tool for Quantitative Studies. Most studies reported outcomes from pre- and post-test research designs and received a weak rating of quality. Although interventions targeting awareness, knowledge, and skill development showed evidence of effectiveness, there is a distinct lack of program development that draws on known risk factors for violence such as the intersection of ableism and gender inequality.
Topics: Female; Humans; Primary Prevention; Risk Factors; Disabled Persons; Gender-Based Violence
PubMed: 37272380
DOI: 10.1177/15248380231175932 -
EClinicalMedicine May 2023Pulmonary tuberculosis (PTB) can result in long-term health consequences, even after successful treatment. We conducted a systematic review and meta-analysis to estimate...
BACKGROUND
Pulmonary tuberculosis (PTB) can result in long-term health consequences, even after successful treatment. We conducted a systematic review and meta-analysis to estimate the occurrence of respiratory impairment, other disability states, and respiratory complications following successful PTB treatment.
METHODS
We identified studies from January 1, 1960, to December 6, 2022, describing populations of all ages that successfully completed treatment for active PTB and had been assessed for at least one of the following outcomes: occurrence of respiratory impairment, other disability states, or respiratory complications following PTB treatment. Studies were excluded if they reported on participants with self-reported TB, extra-pulmonary TB, inactive TB, latent TB, or if participants had been selected on the basis of having more advanced disease. Study characteristics and outcome-related data were abstracted. Meta-analysis was performed using a random effects model. We adapted the Newcastle Ottawa Scale to evaluate the methodological quality of the included studies. Heterogeneity was assessed using the I statistic and prediction intervals. Publication bias was assessed using Doi plots and LFK indices. This study is registered with PROSPERO (CRD42021276327).
FINDINGS
61 studies with 41,014 participants with PTB were included. In 42 studies reporting post-treatment lung function measurements, 59.1% (I = 98.3%) of participants with PTB had abnormal spirometry compared to 5.4% (I = 97.4%) of controls. Specifically, 17.8% (I = 96.6%) had obstruction, 21.3% (I = 95.4%) restriction, and 12.7% (I = 93.2%) a mixed pattern. Among 13 studies with 3179 participants with PTB, 72.6% (I = 92.8%) of participants with PTB had a Medical Research Council dyspnoea score of 1-2 and 24.7% (I = 92.2%) a score of 3-5. Mean 6-min walk distance in 13 studies was 440.5 m (I = 99.0%) in all participants (78.9% predicted, I = 98.9%) and 403.0 m (I = 95.1%) among MDR-TB participants in 3 studies (70.5% predicted, I = 97.6%). Four studies reported data on incidence of lung cancer, with an incidence rate ratio of 4.0 (95% CI 2.1-7.6) and incidence rate difference of 2.7 per 1000 person-years (95% CI 1.2-4.2) when compared to controls. Quality assessment indicated overall low-quality evidence in this field, heterogeneity was high for pooled estimates of nearly all outcomes of interest, and publication bias was considered likely for almost all outcomes.
INTERPRETATION
The occurrence of post-PTB respiratory impairment, other disability states, and respiratory complications is high, adding to the potential benefits of disease prevention, and highlighting the need for optimised management after successful treatment.
FUNDING
Canadian Institutes of Health Research Foundation Grant.
PubMed: 37205923
DOI: 10.1016/j.eclinm.2023.101979 -
Journal of Vision May 2023Over the past decade, extended reality (XR) has emerged as an assistive technology not only to augment residual vision of people losing their sight but also to study the...
Over the past decade, extended reality (XR) has emerged as an assistive technology not only to augment residual vision of people losing their sight but also to study the rudimentary vision restored to blind people by a visual neuroprosthesis. A defining quality of these XR technologies is their ability to update the stimulus based on the user's eye, head, or body movements. To make the best use of these emerging technologies, it is valuable and timely to understand the state of this research and identify any shortcomings that are present. Here we present a systematic literature review of 227 publications from 106 different venues assessing the potential of XR technology to further visual accessibility. In contrast to other reviews, we sample studies from multiple scientific disciplines, focus on technology that augments a person's residual vision, and require studies to feature a quantitative evaluation with appropriate end users. We summarize prominent findings from different XR research areas, show how the landscape has changed over the past decade, and identify scientific gaps in the literature. Specifically, we highlight the need for real-world validation, the broadening of end-user participation, and a more nuanced understanding of the usability of different XR-based accessibility aids.
Topics: Humans; Blindness; Vision Disorders; Visually Impaired Persons
PubMed: 37140911
DOI: 10.1167/jov.23.5.5 -
Alcohol, Clinical & Experimental... Jul 2023Early assessment and diagnosis of FASD are crucial in providing therapeutic interventions that aim to enhance meaningful participation and quality of life for... (Review)
Review
Early assessment and diagnosis of FASD are crucial in providing therapeutic interventions that aim to enhance meaningful participation and quality of life for individuals and their families, while reducing psychosocial difficulties that may arise during adolescence and adulthood. Individuals with lived experience of FASD have expertise based on their own lives and family needs. Their insights into the assessment and diagnostic process are valuable for improving service delivery and informing the provision of meaningful, person- and family-centered care. To date, reviews have focused broadly on the experiences of living with FASD. The aim of this systematic review is to synthesize qualitative evidence on the lived experiences of the diagnostic assessment process for FASD. Six electronic databases, including PubMed, the Cochrane Library, CINAH, EMBASE, PsycINFO, and Web of Science Core Collection were searched from inception until February 2021, and updated in December 2022. A manual search of reference lists of included studies identified additional studies for inclusion. The quality of included studies was assessed using the Critical Appraisal Skills Program Checklist for Qualitative Studies. Data from included studies were synthesized using a thematic analysis approach. GRADE-CERQual was used to assess confidence in the review findings. Ten studies met the selection criteria for inclusion in the review. Thematic analysis identified 10 first-level themes relating to four over-arching topics: (1) pre-assessment concerns and challenges, (2) the diagnostic assessment process, (3) receipt of the diagnosis, and (4) post-assessment adaptations and needs. GRADE-CERQual confidence ratings for each of the review themes were moderate to high. The findings from this review have implications for referral pathways, client-centered assessment processes, and post-diagnostic recommendations and support.
PubMed: 37132046
DOI: 10.1111/acer.15097