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1.
BMC Geriatr ; 24(1): 521, 2024 Jun 15.
Article En | MEDLINE | ID: mdl-38879489

BACKGROUND: The impact of social frailty on older adults is profound including mortality risk, functional decline, falls, and disability. However, effective strategies that respond to the needs of socially frail older adults are lacking and few studies have unpacked how social determinants operate or how interventions can be adapted during periods requiring social distancing and isolation such as the COVID-19 pandemic. To address these gaps, we conducted a scoping review using JBI methodology to identify interventions that have the best potential to help socially frail older adults (age ≥65 years). METHODS: We searched MEDLINE, CINAHL (EPSCO), EMBASE and COVID-19 databases and the grey literature. Eligibility criteria were developed using the PICOS framework. Our results were summarized descriptively according to study, patient, intervention and outcome characteristics. Data synthesis involved charting and categorizing identified interventions using a social frailty framework.  RESULTS: Of 263 included studies, we identified 495 interventions involving ~124,498 older adults who were mostly female. The largest proportion of older adults (40.5%) had a mean age range of 70-79 years. The 495 interventions were spread across four social frailty domains: social resource (40%), self-management (32%), social behavioural activity (28%), and general resource (0.4%). Of these, 189 interventions were effective for improving loneliness, social and health and wellbeing outcomes across psychological self-management, self-management education, leisure activity, physical activity, Information Communication Technology and socially assistive robot interventions. Sixty-three interventions were identified as feasible to be adapted during infectious disease outbreaks (e.g., COVID-19, flu) to help socially frail older adults. CONCLUSIONS: Our scoping review identified promising interventions with the best potential to help older adults living with social frailty.


COVID-19 , Frail Elderly , Humans , Aged , COVID-19/psychology , COVID-19/epidemiology , Frail Elderly/psychology , Social Isolation/psychology , Frailty/psychology , Aged, 80 and over , SARS-CoV-2
2.
J Clin Epidemiol ; 165: 111205, 2024 Jan.
Article En | MEDLINE | ID: mdl-37939744

OBJECTIVES: To identify candidate quality indicators from existing tools that provide guidance on how to practice knowledge translation and implemenation science (KT practice tools) across KT domains (dissemination, implementation, sustainability, and scalability). STUDY DESIGN AND SETTING: We conducted a scoping review using the Joanna Briggs Institute Manual for Evidence Synthesis. We systematically searched multiple electronic databases and the gray literature. Documents were independently screened, selected, and extracted by pairs of reviewers. Data about the included articles, KT practice tools, and candidate quality indicators were analyzed, categorized, and summarized descriptively. RESULTS: Of 43,060 titles and abstracts that were screened from electronic databases and gray literature, 850 potentially relevant full-text articles were identified, and 253 articles were included in the scoping review. Of these, we identified 232 unique KT practice tools from which 27 unique candidate quality indicators were generated. The identified candidate quality indicators were categorized according to the development (n = 17), evaluation (n = 5) and adaptation (n = 3) of the tools, and engagement of knowledge users (n = 2). No tools were identified that appraised the quality of KT practice tools. CONCLUSIONS: The development of a quality appraisal instrument of KT practice tools is needed. The results will be further refined and finalized in order to develop a quality appraisal instrument for KT practice tools.


Implementation Science , Translational Science, Biomedical , Humans , Quality Indicators, Health Care , Translational Research, Biomedical , Health Knowledge, Attitudes, Practice
3.
JMIR Res Protoc ; 12: e50463, 2023 Oct 30.
Article En | MEDLINE | ID: mdl-37902812

BACKGROUND: There is increasing evidence that co-design can lead to more engaging, acceptable, relevant, feasible, and even effective interventions. However, no guidance is provided on the specific designs and associated methods or methodologies involved in the process. We propose the development of the Preferred Components for Co-design in Research (PRECISE) guideline to enhance the consistency, transparency, and quality of reporting co-design studies used to develop complex health interventions. OBJECTIVE: The aim is to develop the first iteration of the PRECISE guideline. The purpose of the PRECISE guideline is to improve the consistency, transparency, and quality of reporting on studies that use co-design to develop complex health interventions. METHODS: The aim will be achieved by addressing the following objectives: to review and synthesize the literature on the models, theories, and frameworks used in the co-design of complex health interventions to identify their common elements (components, values or principles, associated methods and methodologies, and outcomes); and by using the results of the scoping review, prioritize the co-design components, values or principles, associated methods and methodologies, and outcomes to be included in the PRECISE guideline. RESULTS: The project has been funded by the Canadian Institutes of Health Research. CONCLUSIONS: The collective results of this project will lead to a ready-to-implement PRECISE guideline that outlines a minimum set of items to include when reporting the co-design of complex health interventions. The PRECISE guideline will improve the consistency, transparency, and quality of reports of studies. Additionally, it will include guidance on how to enact or enable the values or principles of co-design for meaningful and collaborative solutions (interventions). PRECISE might also be used by peer reviewers and editors to improve the review of manuscripts involving co-design. Ultimately, the PRECISE guideline will facilitate more efficient use of new results about complex health intervention development and bring better returns on research investments. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/50463.

4.
Orphanet J Rare Dis ; 18(1): 254, 2023 08 31.
Article En | MEDLINE | ID: mdl-37653505

PURPOSE: To identify the nature and extent of the evidence on psychological interventions among individuals with Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD). MATERIALS AND METHODS: Eligible studies reported on psychological interventions for individuals of all ages with EDS and/or HSD. All studies published in English were included, with no restrictions to publication year or status. MEDLINE, CINAHL, EMBASE, and PsycINFO were searched. Two reviewers independently screened studies and abstracted data. RESULTS: This scoping review included 10 studies reporting on EDS, HSD, or both. Only cohort studies and case studies were identified. Four studies investigated Cognitive Behavioural Therapy (CBT), one investigated Dialectical Behavioural Therapy (DBT), two investigated psychoeducation, two investigated Intensive Interdisciplinary Pain Treatment (IIPT), and one investigated Acceptance Commitment Therapy (ACT). Interventions targeted pain management, self-destructive behaviours, and related psychological issues (e.g., depression/anxiety). Sample sizes were small (n < 50) for most studies and interventions were generally poorly described. CONCLUSIONS: There is a critical need for high-quality research surrounding psychological interventions for individuals with EDS/HSD. Psychological interventions for these individuals are understudied and existing studies lack validity. Researchers should investigate psychological interventions for individuals with all types of EDS/HSD with high-quality studies to validate findings from the existing studies.


Ehlers-Danlos Syndrome , Psychosocial Intervention , Humans , Ehlers-Danlos Syndrome/therapy , Pain , Sample Size
5.
J Healthc Leadersh ; 15: 161-167, 2023.
Article En | MEDLINE | ID: mdl-37605754

Background: Physicians are essential in health-care delivery. Physician engagement, defined as active participation in administrative and leadership activities in their organization, is a useful metric for hospital leaders to evaluate as they develop and implement strategy. The purpose of this study was to gain insight into the perspectives of senior hospital physician leaders on factors impacting physician engagement. Methods: Semi-structured interviews were conducted virtually. A purposive sample was used. Hospital physician senior leaders were recruited from Ontario public hospitals in Canada. The interviews were recorded, transcribed verbatim, and analyzed. Results: Ten participants in senior hospital physician leadership positions were interviewed. Seven themes were identified as impacting physician engagement: being seen and being heard, accountability, trust, leadership engagement, intercommunication, organizational stability, and discord within the organization. Saturation of themes was achieved. Conclusion: Two-way communication is essential to physician engagement. Physician input in decision-making processes is a vital way to improve engagement. For this to work, leadership must also be engaged. Trust and accountability are critical attributes for senior hospital physician leaders, especially during times of organizational instability. For physicians whose remuneration model is fee-for-service, new compensation models are required for them to actively participate in hospital decision-making.

6.
JBI Evid Synth ; 21(1): 264-278, 2023 01 01.
Article En | MEDLINE | ID: mdl-36111878

OBJECTIVE: The objective of this scoping review is to identify and characterize relevant knowledge translation methods tools (those that provide guidance for optimized knowledge translation practice) to uncover candidate quality indicators to inform a future quality assessment tool for knowledge translation strategies. INTRODUCTION: Knowledge translation strategies (defined as including knowledge translation interventions, tools, and products) target various knowledge users, including patients, clinicians, researchers, and policy-makers. The development and use of strategies that support knowledge translation practice have been rapidly increasing, making it difficult for knowledge users to decide which to use. There is limited evidence-based guidance or measures to help assess the overall quality of knowledge translation strategies. INCLUSION CRITERIA: Empirical and non-empirical documents will be considered if they explicitly describe a knowledge translation methods tool and its development, evaluation or validation, methodological strengths or limitations, and/or use over time. The review will consider a knowledge translation methods tool if it falls within at least one knowledge translation domain (ie, implementation, dissemination, sustainability, scalability, integrated knowledge translation) in the health field. METHODS: We will conduct a systematic search of relevant electronic databases and gray literature. The search strategy will be developed iteratively by an experienced medical information specialist and peer-reviewed with the PRESS checklist. The search will be limited to English-only documents published from 2005 onward. Documents will be independently screened, selected, and extracted by 2 researchers. Data will be analyzed and summarized descriptively, including the characteristics of the included documents, knowledge translation methods tools, and candidate quality indicators. SCOPING REVIEW REGISTRATION: Open Science Framework ( https://osf.io/chxvq ).


Quality Indicators, Health Care , Translational Science, Biomedical , Humans , Quality Indicators, Health Care/standards , Research Design , Translational Science, Biomedical/methods , Translational Science, Biomedical/standards , Translational Research, Biomedical
7.
BMC Geriatr ; 22(1): 636, 2022 08 02.
Article En | MEDLINE | ID: mdl-35918634

BACKGROUND: Evidence supports loneliness and social isolation as a strong risk factor for poor mental and physical health outcomes for older adults. The COVID-19 pandemic necessitated older adults isolate themselves for a prolonged duration. The Faculty of Medicine at the University of Toronto established the Student-Senior Isolation Prevention Partnership (SSIPP), a volunteer program involving telephone calls between medical students and older adults. METHODS: A mixed methods pre-post study design included collecting quantitative data from older adults using the UCLA Loneliness Scale and the Warwick-Edinburgh Mental Well-being Scale. The study included 29 medical students and 47 older adults. The medical students filled out a questionnaire on self-perceived knowledge of social isolation, perception of seniors, attitudes towards seniors, and likelihood to engage in specialties focusing on older adults. Interviews were conducted with both the older adults and the medical students to understand each groups' experiences and perspectives with taking part in the SSIPP program. RESULTS: Participation in the program resulted in significant changes for medical students in areas such as increasing their likelihood to engage in care for older adults (p < .001), improving their knowledge of social isolation for seniors (p < .001), and the value of addressing social isolation in older adults (p < .001). The interviews conducted with the medical students support these findings and provide insight into contributing factors. Loneliness and mental well-being scales did not show significant changes for older adults however, our interviews revealed they considered the program to be valuable. CONCLUSIONS: Our results showed that after the communication outreach program, medical students' perceptions were positively influenced towards older adults and they were more likely to pursue a career concentrated on older adults. The qualitative analysis revealed older adults valued the program. Timing and consistency of calls were factors identified by this group as having practical importance.


COVID-19 , Students, Medical , Aged , COVID-19/epidemiology , Humans , Loneliness , Pandemics , Social Isolation
8.
Injury ; 53(8): 2704-2716, 2022 Aug.
Article En | MEDLINE | ID: mdl-35773023

BACKGROUND: Despite decades-long involvement of trauma survivors in hospital-based program delivery, their roles and impact on trauma care have not been previously described. We aimed to characterize the literature on trauma survivor involvement in hospital-based injury prevention, violence intervention and peer support programs to map what is currently known and identify future research opportunities. METHODS: A scoping review was conducted following the Joanna Briggs Institute (JBI) methodology. Articles were identified through electronic databases and gray literature. Included articles described hospital-based injury prevention programs, violence intervention programs and peer support programs that involved trauma survivors leveraging their injury experiences to counsel others. Studies were screened and data were abstracted in duplicate. Data were synthesized generally and by program type. RESULTS: Thirty-six published articles and four program reports were included. Peer support programs were described in 21 articles, mainly involving trauma survivors as mentors or peer supporters. Peer support programs' most commonly reported outcome was participant satisfaction (n = 6), followed by participant self-efficacy (n = 5), depression (n = 4), and community integration (n = 3). Eleven injury prevention studies were included, all involving trauma survivors as speakers in youth targeted programs. Injury prevention studies commonly reported outcomes of participants' risk behaviors and awareness (n = 9). Violence intervention programs were included in four articles involving trauma survivors as intervention counsellors. Recidivism rate was the most commonly reported outcome (n = 3). Variability exists across and within program types when reporting on involved trauma survivors' gender, age, selection and training, duration of involvement and number of survivors involved. Outcomes related to trauma survivors' own experiences and the impacts to them of program involvement were under-studied. CONCLUSIONS: Significant opportunity exists to fill current knowledge gaps in trauma survivors' involvement in trauma program delivery. There is a need to describe more fully who involved trauma survivors are to inform the development of effective future interventions.


Survivors , Violence , Adolescent , Hospitals , Humans , Violence/prevention & control
9.
Front Pediatr ; 10: 782104, 2022.
Article En | MEDLINE | ID: mdl-35386256

Background: With current medical advancements, more adolescents with neurodevelopmental disorders are transitioning from child- to adult-centred health care services. Therefore, there is an increasing demand for transitional services to help navigate this transition. Health care transitions can be further complicated by mental health challenges prevalent among individuals with cerebral palsy (CP), spina bifida (SB), and childhood onset acquired brain injury (ABI). Offering evidence-based psychological interventions for these populations may improve overall outcomes during transition period(s) and beyond. The objective of this scoping review is to identify key characteristics of psychological interventions being used to treat the mental health challenges of adolescents and adults with CP, SB, and childhood onset ABI. Methods: Methodological frameworks by Arksey and O'Malley, and Levac and colleagues were used to explore studies published between 2009 and 2019. Included studies were required to be written in English and report on a psychological intervention(s) administered to individuals at least 12 years of age with a diagnosis of CP, SB, or childhood onset ABI. All study designs were included. Results: A total of 11 studies were identified. Of these, eight reported psychological interventions for childhood onset ABI, while three reported on CP. No studies reporting on SB were identified. Commonly used interventions included acceptance and commitment therapy (ACT), psychotherapy, and cognitive behavioral therapy (CBT). Conclusions: There are a limited number of studies investigating psychological interventions for individuals with childhood onset ABI and CP, and none for individuals with SB. Further research into effective psychological interventions for these populations will improve mental health outcomes and transitional services.

10.
Trauma Surg Acute Care Open ; 6(1): e000773, 2021.
Article En | MEDLINE | ID: mdl-34746434

OBJECTIVES: The Tactical Combat Casualty Care (TCCC) guidelines detail resuscitation practices in prehospital and austere environments. We sought to review the content and quality of the current TCCC and civilian prehospital literature and characterize knowledge gaps to offer recommendations for future research. METHODS: MEDLINE, EMBASE, CINAHL, and Cochrane Central Register of Controlled Trials were searched for studies assessing intervention techniques and devices used in civilian and military prehospital settings that could be applied to TCCC guidelines. Screening and data extraction were performed according to PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. Quality appraisal was conducted using appropriate tools. RESULTS: Ninety-two percent (n=57) of studies were observational. Most randomized trials had low risk of bias, whereas observational studies had higher risk of bias. Interventions of massive hemorrhage control (n=17) were wound dressings and tourniquets, suggesting effective hemodynamic control. Airway management interventions (n=7) had high success rates with improved outcomes. Interventions of respiratory management (n=12) reported low success with needle decompression. Studies assessing circulation (n=18) had higher quality of evidence and suggested improved outcomes with component hemostatic therapy. Hypothermia prevention interventions (n=2) were generally effective. Other studies identified assessed the use of extended focused assessment with sonography in trauma (n=3) and mixed interventions (n=2). CONCLUSIONS: The evidence was largely non-randomized with heterogeneous populations, interventions, and outcomes, precluding robust conclusions in most subjects addressed in the review. Knowledge gaps identified included the use of blood products and concentrate of clotting factors in the prehospital setting. LEVEL OF EVIDENCE: Systematic review, level III.

11.
Front Pediatr ; 9: 682078, 2021.
Article En | MEDLINE | ID: mdl-34589448

Transitional care interventions have the potential to optimize continuity of care, improve health outcomes and enhance quality of life for adolescents and young adults living with chronic childhood-onset disabilities, including neurodevelopmental disorders, as they transition to adult health and social care services. The paucity of research in this area poses challenges in identifying and implementing interventions for research, evaluation and implementation. The purpose of this project was to advance this research agenda by identifying the transitional care interventions from the scientific literature and prioritize interventions for study. A modified-Delphi approach involving two rounds of online surveys followed by a face-to-face consensus meeting with knowledge users, researchers and clinician experts in transitional care (n = 19) was used. A subsequent virtual meeting concluded the formulation of next steps. Experts rated 16 categories of interventions, derived from a systematic review, on importance, impact, and feasibility. Seven of the 16 interventions categories received a mean score rating of ≥7 (out of 10) on all three rating categories. Participants then rank ordered the reduced list of seven interventions in order of priority and the top four ranked interventions advanced for further discussion at a consensus meeting. Using the Template for Intervention Description and Replication (TIDieR) checklist as a guide, the participants identified that a study of a peer system navigator was worthy of future evaluation. This study highlighted that transitional care interventions are complex and multifaceted. However, the presence of a peer to support system navigation, advocacy and individual and family education was considered the most ideal intervention addressing the current gap in care. Future research, which aims to engage patients and families in a co-design approach, is recommended to further develop this intervention.

12.
JMIR Rehabil Assist Technol ; 8(2): e14321, 2021 May 25.
Article En | MEDLINE | ID: mdl-34032572

BACKGROUND: Globally, 1 in 3 adults live with multiple chronic conditions. Thus, effective interventions are needed to prevent and manage these chronic conditions and to reduce the associated health care costs. Teaching effective self-management practices to people with chronic diseases is one strategy to address the burden of chronic conditions. With the increasing availability of and access to the internet, the implementation of web-based peer support programs has become increasingly common. OBJECTIVE: The purpose of this scoping review is to synthesize existing literature and key characteristics of web-based peer support programs for persons with chronic conditions. METHODS: This scoping review follows the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) extension for scoping reviews guidelines. Studies were identified by searching MEDLINE, CINAHL, Embase, PsycINFO, and the Physiotherapy Evidence Database. Chronic diseases identified by the Public Health Agency of Canada were included. Our review was limited to peer support interventions delivered on the web. Peers providing support had to have the chronic condition that they were providing support for. The information abstracted included the year of publication, country of study, purpose of the study, participant population, key characteristics of the intervention, outcome measures, and results. RESULTS: After duplicates were removed, 12,641 articles were screened. Data abstraction was completed for 41 articles. There was a lack of participant diversity in the included studies, specifically with respect to the conditions studied. There was a lack of studies with older participants aged ≥70 years. There was inconsistency in how the interventions were described in terms of the duration and frequency of the interventions. Informational, emotional, and appraisal support were implemented in the studied interventions. Few studies used a randomized controlled trial design. A total of 4 of the 6 randomized controlled trials reported positive and significant results, including decreased emotional distress and increased health service navigation, self-efficacy, social participation, and constructive attitudes and approaches. Among the qualitative studies included in this review, there were several positive experiences related to participating in a web-based peer support intervention, including increased compassion and improved attitudes toward the individual's chronic condition, access to information, and empowerment. CONCLUSIONS: There is limited recent, high-level evidence on web-based peer support interventions. Where evidence exists, significant improvements in social participation, self-efficacy, and health-directed activity were demonstrated. Some studies incorporated a theoretical framework, and all forms of peer support-emotional, informational, and appraisal support-were identified in the studies included in this review. We recommend further research on web-based peer support in more diverse patient groups (eg, for older adults and chronic conditions outside of cancer, cardiovascular disease, and HIV or AIDS). Key gaps in the area of web-based peer support will serve to inform the development and implementation of future programs.

13.
Ann Surg ; 273(6): e239-e246, 2021 06 01.
Article En | MEDLINE | ID: mdl-30985368

OBJECTIVE: To appraise the quality of reporting on guideline, protocol, and algorithm implementations in adult trauma settings according to the Revised Standards for Quality Improvement Reporting Excellence (SQUIRE 2.0). BACKGROUND: At present we do not know if published reports of guideline implementations in trauma settings are of sufficient quality to facilitate replication by other centers wishing to implement the same or similar guidelines. METHODS: A systematic review of the literature was conducted. Articles were identified through electronic databases and hand searching relevant trauma journals. Studies meeting inclusion criteria focused on a guideline, protocol, or algorithm that targeted adult trauma patients ≥18 years and/or trauma patient care providers, and evaluated the effectiveness of guideline, protocol, or algorithm implementation in terms of change in clinical practice or patient outcomes. Each included study was assessed in duplicate for adherence to the 18-item SQUIRE 2.0 criteria. The primary endpoint was the proportion of studies meeting at least 80% (score ≥15) of SQUIRE 2.0. RESULTS: Of 7368 screened studies, 74 met inclusion criteria. Thirty-nine percent of studies scored ≥80% on SQUIRE 2.0. Criteria that were met most frequently were abstract (93%), problem description (93%), and specific aims (89%). The lowest scores appeared in the funding (28%), context (47%), and results (54%) criteria. No study indicated using SQUIRE 2.0 as a guideline to writing the report. CONCLUSIONS: Significant opportunity exists to improve the utility of guideline implementation reports in adult trauma settings, particularly in the domains of study context and the implications of context for study outcomes.


Algorithms , Clinical Protocols , Data Accuracy , Guideline Adherence/statistics & numerical data , Research Design/standards , Trauma Centers , Adult , Humans
14.
J Contin Educ Health Prof ; 40(4): 257-267, 2020.
Article En | MEDLINE | ID: mdl-33284177

INTRODUCTION: Assessing needs before developing continuing medical education/continuing professional development (CME/CPD) programs is a crucial step in the education process. A previous systematic literature review described a lack of objective evaluation for learning needs assessments in primary care physicians. This scoping review updates the literature on uses of objective evaluations to assess physicians' unperceived learning needs in CME/CPD. Identifying and understanding these approaches can inform the development of educational programs that are relevant to clinical practice and patient care. The study objectives were to (1) scope the literature since the last systematic review published in 1999; (2) conduct a comprehensive search for studies and reports that explore innovative tools and approaches to identify physicians' unperceived learning needs; (3) summarize, compare, and classify the identified approaches; and (4) map any gaps in the literature to identify future areas of research. METHODS: A scoping review was used to "map" the literature on current knowledge regarding approaches to unperceived needs assessment using conceptual frameworks for planning and assessing CME/CPD activities. RESULTS: Two prominent gaps were identified: (1) performance-based assessment strategies are highly recommended in nonresearch articles yet have low levels of implementation in published studies and (2) analysis of secondary data through patient input or environmental scanning is emphasized in grey literature implementation strategies more so than in peer-reviewed theoretical and research articles. DISCUSSION: Future evaluations should continue to incorporate multiple strategies and focus on making unperceived needs assessments actionable by describing strategies for resource management.


Education, Medical, Continuing/methods , Needs Assessment , Primary Health Care/methods , Clinical Competence/standards , Clinical Competence/statistics & numerical data , Cross-Sectional Studies , Education, Medical, Continuing/statistics & numerical data , Humans , Primary Health Care/statistics & numerical data
15.
NeuroRehabilitation ; 47(4): 359-380, 2020.
Article En | MEDLINE | ID: mdl-33164958

BACKGROUND: People with childhood-onset disabilities face unique physical and social challenges in adulthood. Exercise interventions may improve physical performance in children, but there is a lack of research on adults. OBJECTIVE: To describe studies that investigate exercise interventions and to evaluate the quality of physical performance outcome measures for adults with childhood-onset disabilities. METHODS: Eligible studies reported on exercise interventions for adults (ages 16+) with cerebral palsy, spina bifida, or acquired brain injuries. Only randomized controlled trials published in English from 2008 to 2019 were included. MEDLINE, CINAHL, PEDro, EMBASE, and Cochrane Central Register of Controlled Trials were searched. Two reviewers independently screened studies and abstracted data. RESULTS: This scoping review included 4 trials reporting on cerebral palsy only. Three strength training programs found significant improvements in gait, and one mixed training program found significant improvements in strength and fitness. Only two outcome measures used are valid/reliable for adults (6 Minute Walk Test and Borg-20 Grades). CONCLUSION: Certain interventions may improve physical performance, but there is a lack of research on appropriate exercise interventions and physical performance outcome measures for adults with childhood-onset disabilities. Different exercise interventions should be investigated using larger sample sizes and outcome measures should be standardized.


Disabled Children/rehabilitation , Exercise Therapy/methods , Exercise/physiology , Outcome Assessment, Health Care/methods , Physical Functional Performance , Adolescent , Adult , Cerebral Palsy/physiopathology , Cerebral Palsy/rehabilitation , Child , Female , Gait/physiology , Humans , Male , Randomized Controlled Trials as Topic/methods , Resistance Training/methods , Spinal Dysraphism/physiopathology , Spinal Dysraphism/rehabilitation
16.
Pediatrics ; 146(5)2020 11.
Article En | MEDLINE | ID: mdl-33046586

CONTEXT: Transition from the pediatric to the adult health care system is a complex process that should include medical, psychosocial, educational, recreational, and vocational considerations. OBJECTIVE: In this systematic review, we aim to synthesize the evidence on transitional care interventions (TCIs) to improve the quality of life (QoL) for adolescents and young adults with childhood-onset disabilities, including neurodevelopmental disorders. DATA SOURCES: Four electronic databases (Medline, Embase, PsycINFO, and Cumulative Index to Nursing and Allied Health Literature) were searched. STUDY SELECTION: In the included studies, researchers examined TCIs for adolescents and young adults (12-24 years of age) with childhood-onset disabilities. Studies were experimental, quasi-experimental, and observational studies published in the last 26 years. DATA EXTRACTION: Two reviewers independently completed study screening, data extraction, and risk-of-bias assessment. RESULTS: Fifty-two studies were included. Five studies reported on QoL, but statistically significant improvements were noted in only 1 of these studies. Significant improvements were also found in secondary outcomes including disability-related knowledge and transitional readiness. TCIs targeted patients, families and/or caregivers, and health care providers and exhibited great heterogeneity in their characteristics and components. LIMITATIONS: Inconsistent reporting on interventions between studies hindered synthesis of the relationships between specific intervention characteristics and outcomes. CONCLUSIONS: Although there is limited evidence on the impact of TCIs on the QoL for youth with childhood-onset disabilities, there is indication that they can be effective in improving patient and provider outcomes. The initiation of transition-focused care at an early age may contribute to improved long-term health outcomes in this population.


Disabled Children , Health Services for Persons with Disabilities , Quality of Life , Transition to Adult Care , Adolescent , Bias , Child , Humans , Young Adult
17.
PLoS One ; 15(2): e0229182, 2020.
Article En | MEDLINE | ID: mdl-32106224

BACKGROUND: Funding agencies and research journals are increasingly demanding that researchers share their data in public repositories. Despite these requirements, researchers still withhold data, refuse to share, and deposit data that lacks annotation. We conducted a meta-synthesis to examine the views, perspectives, and experiences of academic researchers on data sharing and reuse of research data. METHODS: We searched the published and unpublished literature for studies on data sharing by researchers in academic institutions. Two independent reviewers screened citations and abstracts, then full-text articles. Data abstraction was performed independently by two investigators. The abstracted data was read and reread in order to generate codes. Key concepts were identified and thematic analysis was used for data synthesis. RESULTS: We reviewed 2005 records and included 45 studies along with 3 companion reports. The studies were published between 2003 and 2018 and most were conducted in North America (60%) or Europe (17%). The four major themes that emerged were data integrity, responsible conduct of research, feasibility of sharing data, and value of sharing data. Researchers lack time, resources, and skills to effectively share their data in public repositories. Data quality is affected by this, along with subjective decisions around what is considered to be worth sharing. Deficits in infrastructure also impede the availability of research data. Incentives for sharing data are lacking. CONCLUSION: Researchers lack skills to share data in a manner that is efficient and effective. Improved infrastructure support would allow them to make data available quickly and seamlessly. The lack of incentives for sharing research data with regards to academic appointment, promotion, recognition, and rewards need to be addressed.


Information Dissemination , Research
18.
J Occup Rehabil ; 30(1): 1-21, 2020 03.
Article En | MEDLINE | ID: mdl-31535267

Purpose Despite the desire and ability to work, individuals with childhood onset disabilities are under-represented in employment. Vocational interventions alleviate some barriers to obtaining and maintaining employment for this population. The research question addressed is: What is the impact of vocational interventions on vocational outcomes, quality of life (QoL), and community integration (CI) in adults with childhood onset neurological disabilities including cerebral palsy (CP), spina bifida, and acquired brain injury (ABI)? Methods A literature search was conducted in multiple electronic databases. All experimental and observational studies with comparator group(s) were included. Two reviewers independently completed titles and abstracts screening, full text screening, data abstraction, and risk of bias assessment. Results Seventeen studies were eligible for final inclusion including three randomized-controlled trials, four non-randomized studies, and ten observational studies. Sixteen of seventeen studies included only individuals with ABI, while one study included individuals with CP. Vocational interventions from experimental studies were mainly components of multi-faceted interventions. Most observational studies were from the United States Vocational Rehabilitation Service. Conclusions Vocational interventions may be effective in improving vocational outcomes, QoL, and CI for individuals with ABI. There is limited experimental evidence on interventions that specifically target employment. Observational data suggest that receiving job placement assistance, on-the-job training and supports, counselling/guidance, maintenance, and supported employment successfully predicted employment outcomes.


Brain Injuries/rehabilitation , Cerebral Palsy/rehabilitation , Community Integration , Quality of Life , Rehabilitation, Vocational/methods , Spinal Dysraphism/rehabilitation , Adult , Child , Disabled Persons , Humans , Young Adult
19.
Disabil Rehabil ; 42(8): 1055-1061, 2020 04.
Article En | MEDLINE | ID: mdl-30474432

Purpose: The purpose of this systematic review was to synthesize and appraise the evidence regarding the impact of quality improvement strategies on quality of life as well as physical and psychological well-being of individuals with stroke.Materials and methods: Studies were identified by searching MEDLINE (OVID interface, 2000 onwards), CINAHL (EBSCO interface, 2000 onwards), EMBASE (OVID interface, 2000 to present), and PsycINFO (OVID interface, 2000 onwards). The Effective Practice and Organization of Care Risk of Bias Tool was applied. Extracted data from the publications included: study characteristics, participant characteristics, the strategy characteristics, the outcomes, and quality appraisal.Results: Our review identified 12 trials that utilized only 4 of the 10 quality improvement strategies included in this review. The most common quality improvement strategy was self-management. Other studies included patient education, team changes, and case management. Only 5 of the 12 studies reported statistically significant improvements in some component of quality of life.Conclusions: There is a lack of evidence to demonstrate efficacy/effectiveness of patient education, self-management, team changes, and case management approaches on improving the quality of life of stroke survivors. Identifying the essential features of effective and ineffective strategies, especially in the area of self-management strategies would be beneficial.Implications for rehabilitationThere is a lack of evidence to demonstrate efficacy/effectiveness of patient education, self-management, team changes, and case management approaches on improving the quality of life of stroke survivors.To improve these outcomes, there may be a need to co-create/tailor quality improvement interventions with patients, their caregivers, and providers.The impact of a broader range of quality improvement interventions, including clinician education and patient reminder systems, on quality of life post-stroke should be considered.


Self-Management , Stroke , Humans , Quality Improvement , Quality of Life
20.
J Healthc Leadersh ; 11: 101-113, 2019.
Article En | MEDLINE | ID: mdl-31440112

The term "physician engagement" is used quite frequently, yet it remains poorly defined and measured. The aim of this study is to clarify the term "physician engagement." This study used an eight step-method for conducting concept analyses created by Walker and Avant. MEDLINE, EMBASE, and the Cochrane Central Register of Controlled Trials were searched on February 14, 2019. No limitations were put on the searches with regard to year or language. Results identify that the term "physician engagement" is regular participation of physicians in (1) deciding how their work is done, (2) making suggestions for improvement, (3) goal setting, (4) planning, and (5) monitoring of their performance in activities targeted at the micro (patient), meso (organization), and/or macro (health system) levels. The antecedents of "physician engagement" include accountability, communication, incentives, interpersonal relations, and opportunity. The results include improved outcomes such as data quality, efficiency, innovation, job satisfaction, patient satisfaction, and performance. Defining physician engagement enables physicians and health care administrators to better appreciate and more accurately measure engagement and understand how to better engage physicians.

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