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Realist Evaluation of Autism ServiCe Delivery (RE-ASCeD): which diagnostic pathways work best, for whom and in what context? Protocol for a rapid realist review.

ABSTRACT: INTRODUCTION:The National Health Service (NHS) Long-Term Plan (2019) acknowledges that children and young people with suspected autism wait too long for diagnostic assessment and sets out to reduce waiting times. However, diagnostic pathways vary with limited evidence on what model works best, for whom and in what circumstances. The National Autism Plan for Children (2003) recommended that assessment should be completed within 13 weeks but referral to diagnosis can take as long as 799 days.This Rapid Realist Review (RRR) is the first work package in a national programme of research: a Realist Evaluation of Autism ServiCe Delivery (RE-ASCeD). We explore how particular approaches may deliver high-quality and timely autism diagnostic services for children with possible autism; high quality is defined as compliant with National Institute for Heath and Care Excellence (2011) guidelines, and timely as a pathway lasting no more than one calendar year, based on previous work. METHODS AND ANALYSIS:RRR is a well-established approach to synthesising evidence within a compressed timeframe to identify models of service delivery leading to desired outcomes. RRR works backwards from intended outcomes, identified by NICE guidelines and the NHS England Long-Term Plan. The focus is a clearly defined intervention (the diagnostic pathway), associated with specific outcomes (high quality and timely), within a particular set of parameters (Autism and Child & Adolescent Mental Health services in the UK). Our Expert Stakeholder Group consists of policymakers, content experts and knowledge users with a wide range of experience to supplement, tailor and expedite the process. The RRR is consistent with Realist And Meta-narrative Evidence Syntheses: Evolving Standards (RAMESES) and includes identifying the research question, searching for information, quality appraisal, data extraction, synthesising the evidence, validation of findings with experts and dissemination. ETHICS AND DISSEMINATION:Ethical approval not required. Findings will inform the wider RE-ASCeD evaluation and be reported to NHS England. TRIAL REGISTRATION NUMBER:NCT04422483. This protocol relates to Pre-results.

SUBMITTER: Abrahamson V

PROVIDER: S-EPMC7342857 | biostudies-literature | 2020 Jul

REPOSITORIES: biostudies-literature

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Realist Evaluation of Autism ServiCe Delivery (RE-ASCeD): which diagnostic pathways work best, for whom and in what context? Protocol for a rapid realist review.

Abrahamson Vanessa V Zhang Wenjing W Wilson Patricia P Farr William W Male Ian I

BMJ open 20200706 7

<h4>Introduction</h4>The National Health Service (NHS) Long-Term Plan (2019) acknowledges that children and young people with suspected autism wait too long for diagnostic assessment and sets out to reduce waiting times. However, diagnostic pathways vary with limited evidence on what model works best, for whom and in what circumstances. The National Autism Plan for Children (2003) recommended that assessment should be completed within 13 weeks but referral to diagnosis can take as long as 799 da ...[more]

PMID: 32636288

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Project description:ObjectivesWaiting times in the UK for an autism diagnostic assessment have increased rapidly in the last 5 years. This review explored research (including 'grey' literature) to uncover the current evidence base about autism diagnostic pathways and what works best, for whom and in what circumstances, to deliver high quality and timely diagnosis.DesignWe performed a Rapid Realist Review consistent with recognised standards for realist syntheses. We collected 129 grey literature and policy/guidelines and 220 articles from seven databases (January 2011-December 2019). We developed programme theories of how, why and in what contexts an intervention worked, based on cross comparison and synthesis of evidence. The focus was on identifying factors that contributed to a clearly defined intervention (the diagnostic pathway), associated with specific outcomes (high quality and timely), within specific parameters (Autism diagnostic services in Paediatric and Child & Adolescent Mental Health services in the UK). Our Expert Stakeholder Group, including representatives from local parent forums, national advocacy groups and clinicians, was integral to the process.ResultsBased on 45 relevant articles, we identified 7 programme theories that were integral to the process of diagnostic service delivery. Four were related to the clinical pathway: initial recognition of possible autism; referral and triaging; diagnostic model; and providing feedback to parents. Three programme theories were pertinent to all stages of the referral and diagnostic process: working in partnership with families; interagency working; and training, service evaluation and development.ConclusionsThis theory informed review of childhood autism diagnostic pathways identified important aspects that may contribute to efficient, high quality and family-friendly service delivery. The programme theories will be further tested through a national survey of current practice and in-depth longitudinal case studies of exemplar services.Trial registration numberNCT04422483.

Project description:BackgroundThe COVID-19 pandemic forced health care systems globally to adapt quickly to remote modes of health care delivery, including for routine asthma reviews. A core component of asthma care is supporting self-management, a guideline-recommended intervention that reduces the risk of acute attacks, and improves asthma control and quality of life.ObjectiveWe aimed to explore context and mechanisms for the outcomes of clinical effectiveness, acceptability and safety of supported self-management delivery within remote asthma consultations.DesignThe review followed standard methodology for rapid realist reviews. An External Reference Group (ERG) provided expert advice and guidance throughout the study. We systematically searched four electronic databases and, with ERG advice, selected 18 papers that explored self-management delivery during routine asthma reviews.Setting, participants and interventionHealth care professional delivery of supported self-management for asthma patients during remote (specifically including telephone and video) consultations.Main outcome measuresData were extracted using Context-Mechanism-Outcome (C-M-O) configurations and synthesised into overarching themes using the PRISMS taxonomy of supported self-management as a framework to structure the findings.ResultsThe review findings identified how support for self-management delivered remotely was acceptable (often more acceptable than in-person consultations), and was a safe and effective alternative to face-to-face reviews. In addition, remote delivery of supported self-management was associated with; increased patient convenience, improved access to and attendance at remote reviews, and offered continuity of care.DiscussionRemote delivery of supported self-management for asthma was generally found to be clinically effective, acceptable, and safe with the added advantage of increasing accessibility. Remote reviews could provide the core content of an asthma review, including remote completion of asthma action plans.ConclusionOur findings support the option of remote delivery of routine asthma care for those who have this preference, and offer healthcare professionals guidance on embedding supported self-management into remote asthma reviews.Patient and public contributionPatient and public contribution was provided by a representative of the Asthma UK Centre for Applied Research (AUKCAR) patient and public involvement (PPI) group. The PPI representative reviewed the findings, and feedback and comments were considered. This lead to further interpretations of the data which were included in the final manuscript.

Project description:BackgroundA telemedicine service enabling remote surgical consultation had shown promising results. When the service was to be scaled up, it was unclear how contextual variations among different clinical sites could affect the clinical outcomes and implementation of the service. It is generally recognized that contextual factors and work system complexities affect the implementation and outcomes of telemedicine. However, it is methodologically challenging to account for context in complex health care settings. We conducted a work domain analysis (WDA), an engineering method for modeling and analyzing complex work environments, to investigate and represent contextual influences when a telemedicine service was to be scaled up to multiple hospitals.ObjectiveWe wanted to systematically characterize the implementation contexts at the clinics participating in the scale-up process. Conducting a WDA would allow us to identify, in a systematic manner, the functional constraints that shape clinical work at the implementation sites and set the sites apart. The findings could then be valuable for informed implementation and assessment of the telemedicine service.MethodsWe conducted observations and semistructured interviews with a variety of stakeholders. Thematic analysis was guided by concepts derived from the WDA framework. We identified objects, functions, priorities, and values that shape clinical procedures. An iterative "discovery and modeling" approach allowed us to first focus on one clinic and then readjust the scope as our understanding of the work systems deepened.ResultsWe characterized three sets of constraints (ie, facets) in the domain: the treatment facet, administrative facet (providing resources for procedures), and development facet (training, quality improvement, and research). The constraints included medical equipment affecting treatment options; administrative processes affecting access to staff and facilities; values and priorities affecting assessments during endoscopic retrograde cholangiopancreatography; and resources for conducting the procedure.ConclusionsThe surgical work system is embedded in multiple sets of constraints that can be modeled as facets of the system. We found variations between the implementation sites that might interact negatively with the telemedicine service. However, there may be enough motivation and resources to overcome these initial disruptions given that values and priorities are shared across the sites. Contrasting the development facets at different sites highlighted the differences in resources for training and research. In some cases, this could indicate a risk that organizational demands for efficiency and effectiveness might be prioritized over the long-term outcomes provided by the telemedicine service, or a reduced willingness or ability to accept a service that is not yet fully developed or adapted. WDA proved effective in representing and analyzing these complex clinical contexts in the face of technological change. The models serve as examples of how to analyze and represent a complex sociotechnical context during telemedicine design, implementation, and assessment.

Project description:ObjectivesIn Aotearoa New Zealand (NZ), integration across the healthcare continuum has been a key approach to strengthening the health system and improving health outcomes. A key example has been four regional District Health Board (DHB) groupings, which, from 2011 to 2022, required the country's 20 DHBs to work together regionally. This research explores how this initiative functioned, examining how, for whom and in what circumstances regional DHB groupings worked to deliver improvements in system integration and health outcomes and equity.DesignWe used a realist-informed evaluation study design. We used documentary analysis to develop programme logic models to describe the context, structure, capabilities, implementation activities and impact of each of the four regional groupings and then conducted interviews with stakeholders. We developed a generalised context-mechanisms-outcomes model, identifying key commonalities explaining how regional work 'worked' across NZ while noting important regional differences.SettingNZ's four regional DHB groupings.ParticipantsForty-nine stakeholders from across the four regional groupings. These included regional DHB governance groups and coordinating regional agencies, DHB senior leadership, Māori and Pasifika leadership and lead clinicians for regional work streams.ResultsRegional DHB working was layered on top of an already complex DHB environment. Organisational heterogeneity and tensions between local and regional priorities were key contextual factors. In response, regional DHB groupings leveraged a combination of 'hard' policy and planning processes, as well as 'soft', relationship-based mechanisms, aiming to improve system integration, population health outcomes and health equity.ConclusionThe complexity of DHB regional working meant that success hinged on building relationships, leadership and trust, alongside robust planning and process mechanisms. As NZ reorients its health system towards a more centralised model underpinned by collaborations between local providers, our findings point to a need to align policy expectations and foster environments that support connection and collegiality across the health system.

Project description:BackgroundChildhood vaccination is among the most effective public health interventions available for the prevention of communicable disease, but coverage in many humanitarian settings is sub-optimal. This systematic review critically evaluated peer-review and grey literature evidence on the effectiveness of system-level interventions for improving vaccination coverage in protracted crises, focusing on how they work, and for whom, to better inform preparedness and response for future crises.MethodsRealist-informed systematic review of peer-reviewed and grey literature. Keyword-structured searches were performed in MEDLINE, EMBASE and Global Health, CINAHL, the Cochrane Collaboration and WHOLIS, and grey literature searches performed through the websites of UNICEF, the Global Polio Eradication Initiative (GPEI) and Technical Network for Strengthening Immunization Services. Results were independently double-screened for inclusion on title and abstract, and full text. Data were extracted using a pre-developed template, capturing information on the operating contexts in which interventions were implemented, intervention mechanisms, and vaccination-related outcomes. Study quality was assessed using the MMAT tool. Findings were narratively synthesised.Results50 studies were included, most describing interventions applied in conflict or near-post conflict settings in sub-Saharan Africa, and complex humanitarian emergencies. Vaccination campaigns were the most commonly addressed adaptive mechanism (n = 17). Almost all campaigns operated using multi-modal approaches combining service delivery through multiple pathways (fixed and roving), health worker recruitment and training and community engagement to address both vaccination supply and demand. Creation of collaterals through service integration showed generally positive evidence of impact on routine vaccination uptake by bringing services closer to target populations and leveraging trust that had already been built with communities. Robust community engagement emerged as a key unifying mechanism for outcome improvement across almost all of the intervention classes, in building awareness and trust among crisis-affected populations. Some potentially transformative mechanisms for strengthening resilience in vaccination delivery were identified, but evidence for these remains limited.ConclusionA number of interventions to support adaptations to routine immunisation delivery in the face of protracted crisis are identifiable, as are key unifying mechanisms (multi-level community engagement) apparently irrespective of context, but evidence remains piecemeal. Adapting these approaches for local system resilience-building remains a key challenge.

Project description:BackgroundSome clients who access healthcare services experience problems due to the wider determinants of health which cannot be addressed (solely) by the medical sector. Social Prescribing (SP) addresses clients ' wider health needs and is based on linkworkers who support primary care clients in accessing social, community and voluntary care services that support their needs. Previous literature has provided valuable insights about what works (or not) in an early stage of implementing SP. However, there is limited insight into what works for the implementation of SP towards embedding. This study provides guiding principles by which SP can be successfully implemented towards the embedding stage and identifies which contextual factors and mechanisms influence these guiding principles.MethodsA Rapid Realist Review was conducted to examine what works, for whom, why, and in which contexts. A local Dutch reference panel consisting of health and care organisations helped to inform the research questions. Additionally, a workshop was held with the panel, to discuss what the international insights mean for their local contexts. This input helped to further refine the literature review's findings.ResultsFive guiding principles were identified for successful implementation of SP at the embedding stage: • Create awareness for addressing the wider determinants of health and the role SP services can play; • Ensure health and care professionals build trusting relationships with all involved stakeholders to create a cyclical referral process; • Invest in linkworkers' skills and capacity so that they can act as a bridge between the sectors; • Ensure clients receive appropriate support to improve their self-reliance and increase their community participation; • Invest in the aligning of structures, processes and resources between involved sectors to support the use of SP services.ConclusionTo embed SP, structural changes on a system level as well as cultural changes are needed. This will require a shift in attitude amongst health and care professionals as well as clients towards the use, role and benefit of SP services in addressing the wider determinants of health. It will also require policymakers and researchers to involve communities and include their perspectives.

Project description:BackgroundRapid diagnostic tests (RDTs) largely account for the scale-up of malaria diagnosis in endemic settings. However, diversity in labelling including the instructions for use (IFU) limits their interchangeability and user-friendliness. Uniform, easy to follow and consistent labelling, aligned with international standards and appropriate for the level of the end user's education and training, is crucial but a consolidated resource of information regarding best practices for IFU and labelling of RDT devices, packaging and accessories is not available.MethodsThe Roll Back Malaria Partnership (RBM) commissioned the compilation of international standards and regulatory documents and published literature containing specifications and/or recommendations for RDT design, packaging and labelling of in vitro diagnostics (IVD) (which includes RDTs), complemented with a questionnaire based survey of RDT manufacturers and implementers. A summary of desirable RDT labelling characteristics was compiled, which was reviewed and discussed during a RBM Stakeholder consultation meeting and subsequently amended and refined by a dedicated task force consisting of country programme implementers, experts in RDT implementation, IVD regulatory experts and manufacturers.ResultsThis process led to the development of consensus documents with a list of suggested terms and abbreviations as well as specifications for labelling of box, device packaging, cassettes, buffer bottle and accessories (lancets, alcohol swabs, transfer devices, desiccants). Emphasis was placed on durability (permanent printing or water-resistant labels), legibility (font size, letter type), comprehension (use of symbols) and ease of reference (e.g. place of labelling on the box or cassette packaging allowing quick oversight). A generic IFU template was developed, comprising background information, a template for procedure and reading/interpretation, a selection of appropriate references and a symbol key of internationally recognized symbols together with suggestions about appropriate lay-out, style and readability.ConclusionsThe present document together with its additional files compiled proposes best practices in labelling and IFU for malaria RDTs. It is expected that compliance with these best practices will increase harmonization among the different malaria RDT products available on the market and improve their user-friendliness.

Dataset Information

Realist Evaluation of Autism ServiCe Delivery (RE-ASCeD): which diagnostic pathways work best, for whom and in what context? Protocol for a rapid realist review.

Publications

Realist Evaluation of Autism ServiCe Delivery (RE-ASCeD): which diagnostic pathways work best, for whom and in what context? Protocol for a rapid realist review.

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