scholarly journals Parent-delivered interventions used at home to improve eating, drinking and swallowing in children with neurodisability: the FEEDS mixed-methods study

2021 ◽  
Vol 25 (22) ◽  
pp. 1-208
Author(s):  
Jeremy Parr ◽  
Lindsay Pennington ◽  
Helen Taylor ◽  
Dawn Craig ◽  
Christopher Morris ◽  
...  
Keyword(s):  
Systematic Review ◽  
Young People ◽  
Health Professionals ◽  
Research Evidence ◽  
Health Technology ◽  
Mixed Methods Study ◽  
Measurement Properties ◽  
Stakeholder Consultation ◽  
National Surveys ◽  
Swallowing Difficulties

Background Eating, drinking and swallowing difficulties are common in young children with neurodisability. These difficulties may lead to inadequate calorie intake, which affects a child’s nutrition, growth and general physical health. Objective To examine which interventions are available that can be delivered at home by parents to improve eating, drinking and swallowing in young children with neurodisability and are suitable for investigation in pragmatic trials. Design This was a mixed-methods study that included focus groups, surveys, an update of published systematic reviews of interventions, a systematic review of measurement properties of existing tools, evidence mapping, evidence synthesis, a Delphi survey and stakeholder workshops. Setting The study was carried out in NHS hospitals, community services, family homes and schools. Participants Parents of children who had neurodisability and eating, drinking and swallowing difficulties. Professionals from health and education. Young people with eating, drinking and swallowing difficulties or young people who had previously experienced eating, drinking and swallowing difficulties. Data sources Literature reviews; national surveys of parents and professionals; focus groups with parents, young people and professionals; and stakeholder consultation workshops. Review methods An update of published systematic reviews of interventions (searched July–August 2017), a mapping review (searched October 2017) and a systematic review of measurement properties using COnsensus-based Standards for the Selection of health status Measurement INstruments (COSMIN) methodology (searched May 2018). Results Significant limitations of the available research evidence regarding interventions and tools to measure outcomes were identified. A total of 947 people participated: 400 parents, 475 health professionals, 62 education professionals and 10 young people. The survey showed the wide range of interventions recommended by NHS health professionals, with parents and professionals reporting variability in the provision of these interventions. Parents and professionals considered 19 interventions as relevant because they modified eating, drinking and swallowing difficulties. Parents and professionals considered 10 outcomes as important to measure (including Nutrition, Growth and Health/safety); young people agreed that these were important outcomes. Stakeholder consultation workshops identified that project conclusions and recommendations made sense, were meaningful and were valued by parents and professionals. Parents and health professionals were positive about a proposed Focus on Early Eating, Drinking and Swallowing (FEEDS) toolkit of interventions that, through shared decision-making, could be recommended by health professionals and delivered by families. Limitations The national surveys included large numbers of parents and professionals but, as expected, these were not representative of the UK population of parents of children with eating, drinking and swallowing difficulties. Owing to the limitations of research evidence, pragmatic decisions were made about interventions that might be included in future research and outcomes that might be measured. For instance, the reviews of research found only weak or poor evidence to support the effectiveness of interventions. The review of outcome measures found only limited low-level evidence about their psychometric properties. Conclusions Opportunities and challenges for conducting clinical trials of the effectiveness of the FEEDS toolkit of interventions are described. Parents and professionals thought that implementation of the toolkit as part of usual NHS practice was appropriate. However, this would first require the toolkit to be operationalised through development as a complex intervention, taking account of constituent interventions, delivery strategies, implementation and manualisation. Subsequently, an evaluation of its clinical effectiveness and cost-effectiveness could be undertaken using appropriate research methods. Future work Initial steps include FEEDS toolkit development and evaluation of its use in clinical practice, and identification of the most robust methods to measure valued outcomes, such as Nutrition and Growth. Trial registration Current Controlled Trials ISRCTN10454425. Funding This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 25, No. 22. See the NIHR Journals Library website for further project information.

scholarly journals Improving continence in children and young people with neurodisability: a systematic review and survey

2021 ◽  
Vol 25 (73) ◽  
pp. 1-258
Author(s):  
Helen Eke ◽  
Harriet Hunt ◽  
Susan Ball ◽  
Morwenna Rogers ◽  
Rebecca Whear ◽  
...  
Keyword(s):  
Systematic Review ◽  
Spinal Cord ◽  
Cost Effectiveness ◽  
Young People ◽  
Technology Assessment ◽  
Health Professionals ◽  
Current Practice ◽  
Health Technology ◽  
Care Staff ◽  
Children And Young People

Background Children and young people with neurodisability often need help to achieve socially acceptable bladder and bowel control. Approaches vary depending on whether or not the impairment results from spinal cord pathology that impairs motor control and sensation of the bladder and bowel. Currently, there is uncertainty about which interventions are effective. Objective The objective was to summarise the available evidence on and current practice for improving continence in children and young people with neurodisability. Design A systematic review of the effectiveness, cost-effectiveness and factors that modify intervention implementation, alongside a cross-sectional, online survey of current practice with health professionals, parent carers, school and care staff and young people with neurodisability. Results Twelve databases were searched in the review, resulting in 5756 references; 71 studies (72 papers) were included in the analyses. Most of the evidence was for children with spinal cord pathology, which involved evaluations of pharmacological approaches and surgical techniques, whereas the evidence pertaining to those with non-spinal-cord-related pathology tended to be for behavioural interventions. The methodological quality of studies was rated as being moderate to poor. There were three robust qualitative studies about the experience of continence among children with spinal cord pathology. We found substantial heterogeneity across the interventions that we evaluated in terms of quality, study design and outcomes measured. No economic studies were found. The results were synthesised narratively and reported in text and tables. We did not find any eligible studies evaluating interventions using toilet and clothing adaptations in the review, although the survey highlighted that these types of interventions are frequently used and considered. In total, 949 people responded to the survey: 202 health professionals, 605 parent carers, 122 school and social care staff, and 20 young people. The survey results illustrated the different roles that professionals have in improving continence, highlighting the importance of a multidisciplinary approach to supporting children and young people and their families. Clinicians employ a range of assessments and interventions to improve continence or independent toileting, depending on the needs of the child. Limitations Quantitative studies in the review were not methodologically robust. The survey had a risk of response bias. Conclusions Our research found a dearth of good-quality evidence for many of the interventions currently in use, and no evidence of experiences of implementing interventions for children with non-spinal-cord-related pathology. There was also no evidence of cost-effectiveness of any of the interventions. Future work There is a need to involve young people and families in the design of high-quality evaluative research for interventions that aim to improve continence. This is especially the case for children with autism and learning disability, who have been neglected in previous evaluative and qualitative research. We recommend better training for health, education and care professionals about toileting, informed by evidence and the lived experiences of children and their families. We recommend a joined-up multidisciplinary and holistic approach to improving continence to maximise independence, dignity and comfort. It is vital that children and young people with neurodisability have early access to regular, integrated assessment of their bladder and bowel health, and are fully supported with appropriate personalised treatment. Study registration This study is registered as PROSPERO CRD42018100572. Funding This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 25, No. 73. See the NIHR Journals Library website for further project information.

scholarly journals Instruments for assessing health professionals’ skills in breaking bad news: protocol for a systematic review of measurement properties

BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e048019
Author(s):  
Daniel Gutierrez-Sanchez ◽  
Marina García-Gámez ◽  
Juan Pablo Leiva-Santos ◽  
Inmaculada Lopez-Leiva
Keyword(s):  
Systematic Review ◽  
Health Professionals ◽  
Search Strategy ◽  
Evidence Synthesis ◽  
Bad News ◽  
Measurement Properties ◽  
Breaking Bad News ◽  
Measurement Instruments ◽  
Breaking Bad ◽  
Evaluation Approach

IntroductionHealth professionals are often involved in the process of breaking bad news (BBN), which remains a difficult challenge, as it requires not only theoretical knowledge, but also the development of humanistic, emotional and communication skills. Therefore, optimal BBN assessment is essential. In this regard, sound measurement instruments are needed to evaluate BBN properly in research, teaching and clinical settings. Several instruments have been designed and validated to assess BBN. In this context, choosing the most appropriate instrument for assessing health professionals’ skills in BBN is essential. The aims of this systematic review are to: (1) identify all the instruments used for assessing health professionals’ skills in BBN; and (2) critically appraise their measurement properties.MethodsA systematic review will be undertaken according to the most up-to-date COnsensus-based Standards for the selection of health status Measurement INstruments’ (COSMIN) methodology. The protocol of this systematic review was developed using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. The search strategy will be performed following the Peer Review of Electronic Search Strategies. The search strategy will be conducted in CINAHL, MEDLINE, Embase, PsycINFO, SciELO and Open Grey. Two review authors will independently appraise the full-text articles according to the COSMIN Risk of Bias checklist. Quality ratings and evidence synthesis will be performed using a modified Grading of Recommendations Assessment, Development and Evaluation approach.Ethics and disseminationEthical approval is not necessary for systematic review protocols. The results will be disseminated by publication in a peer-reviewed journal and presented at a relevant conference.PROSPERO registration numberCRD42020207586.

scholarly journals Protocol for a systematic review of instruments for the assessment of quality of life and well-being in children and adolescents with cerebral palsy

BMJ Open ◽  
2017 ◽  
Vol 7 (9) ◽  
pp. e015924 ◽  
Author(s):  
Christine Mpundu-Kaambwa ◽  
Gang Chen ◽  
Elisabeth Huynh ◽  
Remo Russo ◽  
Julie Ratcliffe
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Cerebral Palsy ◽  
Young People ◽  
Children And Adolescents ◽  
Well Being ◽  
Measurement Properties ◽  
Cochrane Library ◽  
Economic Evaluations

IntroductionCerebral palsy is the most common cause of physical disability in children and adolescents and is associated with impairments that may reduce the quality of life (QOL) of this population. Patient-reported outcome measures (PROMs) can facilitate the assessment of the effect of disease and treatment on QOL, from a patient viewpoint. The purpose of this systematic review is to identify PROMs that are used to measure QOL and subjective well-being (SWB) outcomes in young people with cerebral palsy and to evaluate the suitability of these PROMs for application in economic evaluations within this population.Methods and analysisMEDLINE, Scopus, the Cochrane Library, Web of Science Core Collection, EconLit, PsycINFO, CINAHL, EMBASE and Informit will be systematically searched from inception to date of search. Published peer-reviewed, English-language articles reporting PROMs measuring QOL or SWB outcomes in children and adolescents with cerebral palsy will be included. One reviewer will conduct the initial search and screen titles and abstracts for potentially eligible studies. The search will be performed in November 2017. To reduce the likelihood of reviewer selection bias, two other reviewers will independently screen a randomly selected subsample (10%) of the citations. Two reviewers will then retrieve full texts of potentially eligible studies and assess them against predefined inclusion criteria. The suitability of selected PROMs for use in economic evaluations of young people with cerebral palsy will be assessed using the International Society of Quality of Life Research recommended Minimum Standards and the Patient-Centered Outcomes and Comparative Effectiveness Research checklist. A narrative synthesis of extracted data will be presented including study descriptive data, PROMs measurement properties, settings in which they were applied and the valuation methods. Recommendations for practice on the selection of PROMs for use in economic evaluations of children and adolescents with cerebral palsy will be presented.Ethics and disseminationEthical approval is not required as the proposed systematic review will not use primary data. The results of this study will be widely disseminated through publication in a peer-reviewed journal and conference presentation(s).Systematic review registration numberInternational Prospective Register of Systematic Reviews number: CRD42016049746.

scholarly journals Youth participatory research evidence to inform health policy: a systematic review protocol

BMJ Open ◽  
2020 ◽  
Vol 10 (8) ◽  
pp. e036522
Author(s):  
Janet Njelesani ◽  
Jean Hunleth
Keyword(s):  
Systematic Review ◽  
Health Policy ◽  
Young People ◽  
Participatory Research ◽  
Health Research ◽  
Mixed Methods Research ◽  
Research Evidence ◽  
Evidence Base ◽  
Advisory Group ◽  
Active Dissemination

IntroductionYoung people’s participation in health research produces knowledge that is indispensable for creating appropriate and effective policies. However, how best to disseminate youth participatory research evidence to impact health policy is not known. Therefore, the objectives of this systematic review are to describe the evidence produced through youth participatory research, including the strategies used to disseminate youth participatory research evidence to health policymakers. These are necessary to improve policymakers’ use of youth participatory research evidence and, thereby, make programmes more impactful for young people.Methods and analysisThe meta-narrative methodology will guide the systematic review to highlight the contrasting and complementary evidence on the use of engaging youth in research to affect health policymaking. Relevant studies will be identified by searching electronic databases, including but not limited to EBSCO, PROQUEST, OVID Medline, Sociological Abstracts and Google Scholar from inception to December 2020. The methodological quality of included quantitative, qualitative and mixed-methods research studies will be assessed using valid appraisal tools. The meta-narrative approach to analysis will include identifying meta-narratives of how youth participation informed the health research findings.Ethics and disseminationAn advisory group of young people will advise on the study and dissemination of the findings. As part of our plan for active dissemination, we will produce a policy brief that builds the rationale for using research with and by youth as part of an evidence base necessary for achieving youth health outcomes.

scholarly journals Prevalence of global physical activity among young people: an updated systematic review for the Brazil’s Report Card

2021 ◽  
Vol 23 ◽  
Author(s):  
Valter Cordeiro Barbosa Filho ◽  
Rafael Martins da Costa ◽  
Bruno Nunes de Oliveira ◽  
Victor Hugo Santos de Castro ◽  
Kelly Samara Silva
Keyword(s):  
Physical Activity ◽  
Systematic Review ◽  
Young People ◽  
Monitoring And Evaluation ◽  
Report Card ◽  
Narrative Approach ◽  
Physically Active ◽  
National Surveys ◽  
Manual Search ◽  
Objectively Measured

abstract This study aimed to update the review of Brazil’s Report Card on the prevalence of global physical activity (PA) among Brazilian children and adolescents. This systematic review included an electronic search of eight databases (PubMed, Scopus, Web of Science, LILACS, SPORTDiscus, BIREME, Scielo, and Google Scholar) and a manual search of the references of retrieved studies. Studies published in 2018 and 2019 that assessed global PA among Brazilian youth were included. A narrative approach to the results was adopted. The initial search retrieved 1,892 potentially relevant titles (1,244 titles after duplicate analysis), of which 62 (47 different studies) met all the inclusion criteria. Most updated studies were carried out in Southern (40.4%) and Southeastern (25.5%) Brazil. Six studies provided data from national surveys (12.8%), and one study included preschool children (< 5 years old). Ten studies objectively measured PA (accelerometer or pedometer devices). In the updated studies, the overall proportion of young people who were physically active ranged from 9.8% to 79.6%. Three national surveys reported the prevalence of physically active students, ranging from 18.4% to 78.8%. There was an increase of surveys that objectively measured PA and with children under 12 years of age in the 2018 and 2019 studies. However, important research gaps (e.g., variations in the measurement of global PA), even in the same study, should be considered to improve the monitoring and evaluation of global PA in Brazil.

scholarly journals Measurement properties of instruments that assess participation in young people with autism spectrum disorder: a systematic review

2017 ◽  
Vol 60 (3) ◽  
pp. 230-243 ◽  
Author(s):  
Francesca Lami ◽  
Kristine Egberts ◽  
Alexandra Ure ◽  
Rowena Conroy ◽  
Katrina Williams
Keyword(s):  
Systematic Review ◽  
Autism Spectrum Disorder ◽  
Young People ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Measurement Properties

scholarly journals Health Technologies for Detecting High Risk Conditions in Pregnancy: A Systematic Review

2019 ◽  
Vol 2 (3) ◽  
Author(s):  
Devita Madiuw ◽  
Restuning Widiasih ◽  
Pipih Napisah
Keyword(s):  
Systematic Review ◽  
High Risk ◽  
Pregnant Women ◽  
Health Professionals ◽  
English Language ◽  
Health Technology ◽  
Health Technologies ◽  
Risk Pregnancy ◽  
Target User ◽  
In Pregnancy

In this technological era, various health technology including media, instruments and tools are created in area maternal and babies’ health. However, comprehensive information about these technology products are limited. This literature review aimed to find health technology in area maternal and baby especially in detecting high risk conditions in pregnancy. Method, this is a systematic review, the articles were searched from two databases including PubMed and CINAHL using several keywords. The keywords were high risk, pregnant women and technology OR instrument OR tools. Inclusion criteria are primary research, English language, and publications in the last 5 years. After the critical appraisal, a total of 16 articles included in the analysis. Result: The literature related of technology divided into two criteria which are the questionnaire development and health tools or devices. None of technology came from Indonesia. The entire technology showed effectiveness in detecting risks, and interventions to improve prenatal care. The target user for health tools mostly health professionals. Conclusion: various health technologies in area maternal in baby health are identified, however the majority of them provided from health professionals. Technology development is needed specifically, in the form of simple and practical tools or devices to assess foetal health with target user is pregnant women with high risk pregnancy.

scholarly journals Systematic review of tools to measure outcomes for young children with autism spectrum disorder

2015 ◽  
Vol 19 (41) ◽  
pp. 1-506 ◽  
Author(s):  
Helen McConachie ◽  
Jeremy R Parr ◽  
Magdalena Glod ◽  
Jennifer Hanratty ◽  
Nuala Livingstone ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Autism Spectrum Disorder ◽  
Young People ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Measurement Properties ◽  
Children With Asd

BackgroundThe needs of children with autism spectrum disorder (ASD) are complex and this is reflected in the number and diversity of outcomes assessed and measurement tools used to collect evidence about children’s progress. Relevant outcomes include improvement in core ASD impairments, such as communication, social awareness, sensory sensitivities and repetitiveness; skills such as social functioning and play; participation outcomes such as social inclusion; and parent and family impact.ObjectivesTo examine the measurement properties of tools used to measure progress and outcomes in children with ASD up to the age of 6 years. To identify outcome areas regarded as important by people with ASD and parents.MethodsThe MeASURe (Measurement in Autism Spectrum disorder Under Review) research collaboration included ASD experts and review methodologists. We undertook systematic review of tools used in ASD early intervention and observational studies from 1992 to 2013; systematic review, using the COSMIN checklist (Consensus-based Standards for the selection of health Measurement Instruments) of papers addressing the measurement properties of identified tools in children with ASD; and synthesis of evidence and gaps. The review design and process was informed throughout by consultation with stakeholders including parents, young people with ASD, clinicians and researchers.ResultsThe conceptual framework developed for the review was drawn from the International Classification of Functioning, Disability and Health, including the domains ‘Impairments’, ‘Activity Level Indicators’, ‘Participation’, and ‘Family Measures’. In review 1, 10,154 papers were sifted – 3091 by full text – and data extracted from 184; in total, 131 tools were identified, excluding observational coding, study-specific measures and those not in English. In review 2, 2665 papers were sifted and data concerning measurement properties of 57 (43%) tools were extracted from 128 papers. Evidence for the measurement properties of the reviewed tools was combined with information about their accessibility and presentation. Twelve tools were identified as having the strongest supporting evidence, the majority measuring autism characteristics and problem behaviour. The patchy evidence and limited scope of outcomes measured mean these tools do not constitute a ‘recommended battery’ for use. In particular, there is little evidence that the identified tools would be good at detecting change in intervention studies. The obvious gaps in available outcome measurement include well-being and participation outcomes for children, and family quality-of-life outcomes, domains particularly valued by our informants (young people with ASD and parents).ConclusionsThis is the first systematic review of the quality and appropriateness of tools designed to monitor progress and outcomes of young children with ASD. Although it was not possible to recommend fully robust tools at this stage, the review consolidates what is known about the field and will act as a benchmark for future developments. With input from parents and other stakeholders, recommendations are made about priority targets for research.Future workPriorities include development of a tool to measure child quality of life in ASD, and validation of a potential primary outcome tool for trials of early social communication intervention.Study registrationThis study is registered as PROSPERO CRD42012002223.FundingThe National Institute for Health Research Health Technology Assessment programme.

scholarly journals Instruments to assess Evidence-Based Practice among healthcare professionals: a systematic review

2021 ◽  
Author(s):  
Anderson Martins da Silva ◽  
Daniela Pereira Valentim ◽  
Adriana Leite Martins ◽  
Rosimeire Simprini Padula
Keyword(s):  
Systematic Review ◽  
Health Professionals ◽  
Healthcare Professionals ◽  
Evidence Based Practice ◽  
Assessment Tools ◽  
Measurement Properties ◽  
Evidence Based ◽  
Cosmin Checklist ◽  
Fresno Test ◽  
New Instruments

The study makes it possible to select the most appropriate instruments to evaluate the use of Evidence-Based Practice (EBP) among health professionals. The objective of this study was to assess the measurement properties, summarize and describe the instruments that evaluate the use of EBP in health professionals, currently available through the update of the systematic review. The study was conducted and reported according to recommendations of the PRISMA checklist. A systematic search was conducted in the databases: PubMed, Embase, CINAHL and ERIC. In addition, three groups of search terms: EBP terms; evaluation; cross-cultural adaptation and measurement proprieties.  They included studies that showed assessment tools of EBP in healthcare workers in general publication of full-text scientific articles, which tested the measurement properties and publication of an article in English. Searches included published studies from 2006 until July 2020. Evaluation of the methodological quality of the studies was conducted according to the COSMIN initiative. 92 studies were included. Forty new instruments have been identified to assess EBP. From these, most were developed for nursing professionals and physiotherapists. More than 48% of studies have American and Australian English as their native language. Only 28% of the studies included students in the samples. Reliability was considered appropriate (sufficient) in 76% of the instruments. The COSMIN checklist classified 7 (seven) instruments as being suitable for use in the target audience. However, Fresno Test remains the most appropriate instrument for assessing the use of EBP in healthcare professionals. 40 new instruments that assess EBP have been identified. Most are consistent and reliable for measuring the use of EBP in healthcare professionals. The Fresno Test, in a list of seven reliable and valid instruments for analysis, remains the most used and the one that most assesses the domains of EBP.

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