Factors influencing effective data sharing between health care and social care regarding the care of older people: a qualitative evidence synthesis.

Background: Sharing data about patients between health and social care organisations and professionals, such as details of their medication, is essential to provide co-ordinated and person-centred care. While professionals can share data in a number of ways - for example, through shared electronic record systems or multidisciplinary team meetings - there are many factors that make sharing data across the health and social care boundary difficult. These include professional hierarchies, inaccessible electronic systems and concerns around confidentiality. Data-sharing is particularly important for the care of older people, as they are more likely to have multiple or long-term conditions; understanding is needed on how to enable effective data-sharing. Objectives: To identify factors perceived as influencing effective data-sharing, including the successful adoption of interventions to improve data-sharing, between healthcare and social care organisations and professionals regarding the care of older people. Methods: MEDLINE and seven further databases were searched (in March 2023) for qualitative and mixed-methods studies. Relevant websites were searched and citation-chasing completed on included studies. Studies were included if they focused on older people, as defined by the study, and data-sharing, defined as the transfer of information between healthcare and social care organisations, or care professionals, regarding a patient, and were conducted in the United Kingdom. Purposive sampling was used to obtain a final set of studies which were analysed using framework synthesis. Quality appraisal was conducted using the Wallace checklist. Stakeholder and public and patient involvement groups were consulted throughout the project. Results: Twenty-four studies were included; most scored highly on the quality appraisal checklist. Four main themes were identified. Within Goals, we found five purposes of data-sharing: joint (health and social care) assessment, integrated case management, transitions from hospital to home, for residents of care homes, and for palliative care. In Relationships, building interprofessional relationships, and therefore trust and respect, between professionals supported data-sharing, while the presence of professional prejudices and mistrust hindered it. Interorganisational Processes and procedures, such as a shared vision of care and operationalisation of formal agreements, for example data governance, supported data-sharing. Within Technology and infrastructure, the use of technology as a tool supported data-sharing, as did professionals' awareness of the wider care system. There were also specific factors influencing data-sharing related to its purpose; for example, there was a lack of legal frameworks in the area of palliative care. Limitations: Data-sharing was usually discussed in the context of wider initiatives, for example integrated care, which meant the information provided was often limited. The COVID-19 pandemic has had significant impacts on ways of working; none of our included studies were conducted during or since the pandemic. Conclusions: Our findings indicate the importance of building interprofessional relationships and ensuring that professionals are able to share data in multiple ways. Future work: Exploration of the impact of new technologies and ways of working adopted as a result of the COVID-19 pandemic on data-sharing is needed. Additionally, research should explore patient experience and the prevention of digital exclusion among health and social care professionals. Study registration: The protocol was registered on PROSPERO CRD42023416621. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR135660), as part of a series of evidence syntheses under award NIHR130538, and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 12. See the NIHR Funding and Awards website for further award information.

Health and social care organisations and professionals need to share data about older people. Data ­ for example, details of medication ­ can be shared in different ways, for example electronic records systems, team meetings. Sharing data is important, especially for people with multiple or long-term conditions as they may need co-ordinated help from health and social care services. However, professionals often find it difficult to share data. For example, they may have concerns about confidentiality or may not have access to the same electronic record systems. This review investigated factors that influence data-sharing between health and social care. We found 24 studies that used methods such as focus groups or interviews. We found five main purposes of sharing data in the studies: to assess people's need for health and social care to co-ordinate care for people with existing needs to help people move from hospital to home to care for people living in care homes to support end-of-life care. Factors that help health and social care professionals share data include: having trust and respect for each other having suitable policies and processes in place between their organisations having an awareness of why other professionals need data. New technologies can help professionals share data, but they need to be part of the normal way that people work. These findings could help to improve data-sharing as they show that professionals need multiple ways of sharing data. They also suggest more research is needed so that new technology supports data-sharing. Stakeholders ­ for example, doctors, social workers, and public and patient representatives ­ provided feedback throughout the project. The review contains studies published between 1995 and March 2023.

Interventions to improve continence for children and young people with neurodisability: a national survey of practitioner and family perspectives and experiences.

OBJECTIVE: Describe families' experiences of interventions to improve continence in children and young people with neurodisability, and health professionals' and school and social care staff's perspectives regarding factors affecting intervention use. DESIGN: Four online surveys were developed and advertised to parent carers, young people with neurodisability, health professionals and school and social care staff, via societies, charities, professional contacts, schools, local authorities, and national parent carer and family forums, who shared invitations with their networks. Survey questions explored: difficulties helping children and young people use interventions; acceptability of interventions and waiting times; ease of use and availability of interventions, and facilitators and barriers to improving continence. RESULTS: 1028 parent carers, 26 young people, 352 health professionals and 202 school and social care staff registered to participate. Completed surveys were received from 579 (56.3%) parent carers, 20 (77%) young people, 193 (54.8%) health professionals, and 119 (58.9%) school and social care staff. Common parent carer-reported difficulties in using interventions to help their children and young people to learn to use the toilet included their child's lack of understanding about what was required (reported by 337 of 556 (60.6%) parent carers who completed question) and their child's lack of willingness (343 of 556, 61.7%). Almost all (142 of 156, 91%) health professionals reported lack of funding and resources as barriers to provision of continence services. Many young people (14 of 19, 74%) were unhappy using toilet facilities while out and about. CONCLUSIONS: Perceptions that children lack understanding and willingness, and inadequate facilities impact the implementation of toileting interventions for children and young people with neurodisability. Greater understanding is needed for children to learn developmentally appropriate toileting skills. Further research is recommended around availability and acceptability of interventions to ensure quality of life is unaffected.

Remote monitoring for long-term physical health conditions: an evidence and gap map.

Background: Remote monitoring involves the measurement of an aspect of a patient's health without that person being seen face to face. It could benefit the individual and aid the efficient provision of health services. However, remote monitoring can be used to monitor different aspects of health in different ways. This evidence map allows users to find evidence on different forms of remote monitoring for different conditions easily to support the commissioning and implementation of interventions. Objectives: The aim of this map was to provide an overview of the volume, diversity and nature of recent systematic reviews on the effectiveness, acceptability and implementation of remote monitoring for adults with long-term physical health conditions. Data sources: We searched MEDLINE, nine further databases and Epistemonikos for systematic reviews published between 2018 and March 2022, PROSPERO for continuing reviews, and completed citation chasing on included studies. Review methods: (Study selection and Study appraisal): Included systematic reviews focused on adult populations with a long-term physical health condition and reported on the effectiveness, acceptability or implementation of remote monitoring. All forms of remote monitoring where data were passed to a healthcare professional as part of the intervention were included. Data were extracted on the characteristics of the remote monitoring intervention and outcomes assessed in the review. AMSTAR 2 was used to assess quality. Results were presented in an interactive evidence and gap map and summarised narratively. Stakeholder and public and patient involvement groups provided feedback throughout the project. Results: We included 72 systematic reviews. Of these, 61 focus on the effectiveness of remote monitoring and 24 on its acceptability and/or implementation, with some reviews reporting on both. The majority contained studies from North America and Europe (38 included studies from the United Kingdom). Patients with cardiovascular disease, diabetes and respiratory conditions were the most studied populations. Data were collected predominantly using common devices such as blood pressure monitors and transmitted via applications, websites, e-mail or patient portals, feedback provided via telephone call and by nurses. In terms of outcomes, most reviews focused on physical health, mental health and well-being, health service use, acceptability or implementation. Few reviews reported on less common conditions or on the views of carers or healthcare professionals. Most reviews were of low or critically low quality. Limitations: Many terms are used to describe remote monitoring; we searched as widely as possible but may have missed some relevant reviews. Poor reporting of remote monitoring interventions may mean some included reviews contain interventions that do not meet our definition, while relevant reviews might have been excluded. This also made the interpretation of results difficult. Conclusions and future work: The map provides an interactive, visual representation of evidence on the effectiveness of remote monitoring and its acceptability and successful implementation. This evidence could support the commissioning and delivery of remote monitoring interventions, while the limitations and gaps could inform further research and technological development. Future reviews should follow the guidelines for conducting and reporting systematic reviews and investigate the application of remote monitoring in less common conditions. Review registration: A protocol was registered on the OSF registry (https://doi.org/10.17605/OSF.IO/6Q7P4). Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health Services and Delivery Research programme (NIHR award ref: NIHR135450) as part of a series of evidence syntheses under award NIHR130538. For more information, visit https://fundingawards.nihr.ac.uk/award/NIHR135450 and https://fundingawards.nihr.ac.uk/award/NIHR130538. The report is published in full in Health and Social Care Delivery Research; Vol. 11, No. 22. See the NIHR Funding and Awards website for further project information.

Remote monitoring is when an aspect of a patient's health, such as blood pressure, is measured at home, and this information is passed to a healthcare professional. We created an evidence and gap map for remote monitoring in adults with long-term physical health conditions. The map is presented as an interactive online table, which can be used to find the number and quality of systematic reviews that address specific questions (e.g. remote monitoring in diabetes). The map does not summarise findings from the reviews (e.g. whether remote monitoring works or not). We found 72 reviews investigating whether remote monitoring works and/or how to implement it, including whether it is acceptable to patients, carers and healthcare professionals. Thirty-seven reviews included studies from the United Kingdom. The most common health conditions were heart disease, diabetes and lung conditions. There was little or no evidence for some health conditions (e.g. epilepsy). Data from patients were collected mainly using common devices (e.g. heart rate monitors) and passed to healthcare providers using computer applications, websites and telephone calls. Most feedback received by patients was motivational/educational. There was evidence about the acceptability of remote monitoring for patients, but little for carers and healthcare professionals. Reviews focused on whether remote monitoring affected physical and mental health, health service use, acceptability or implementation. More than half the included reviews were judged to be low quality; however, they may still include high-quality studies. The map could help to design and deliver remote monitoring programmes and guide further research and technology development. Stakeholder and public and patient representatives provided feedback throughout the project. The map contains reviews published between 2018 and March 2022.

A rehabilitation intervention to improve recovery after an episode of delirium in adults over 65 years (RecoverED): study protocol for a multi-centre, single-arm feasibility study.

BACKGROUND: Delirium affects over 20% of all hospitalised older adults. Delirium is associated with a number of adverse outcomes following hospital admission including cognitive decline, anxiety and depression, increased mortality and care needs. Previous research has addressed prevention of delirium in hospitals and care homes, and there are guidelines on short-term treatment of delirium during admission. However, no studies have addressed the problem of longer-term recovery after delirium and it is currently unknown whether interventions to improve recovery after delirium are effective and cost-effective. The primary objective of this feasibility study is to test a new, theory-informed rehabilitation intervention (RecoverED) in older adults delivered following a hospital admission complicated by delirium to determine whether (a) the intervention is acceptable to individuals with delirium and (b) a definitive trial and parallel economic evaluation of the intervention are feasible. METHODS: The study is a multi-centre, single-arm feasibility study of a rehabilitation intervention with an embedded process evaluation. Sixty participants with delirium (aged > 65 years old) and carer pairs will be recruited from six NHS acute hospitals across the UK. All pairs will be offered the intervention, with follow-up assessments conducted at 3 months and 6 months post-discharge home. The intervention will be delivered in participants' own homes by therapists and rehabilitation support workers for up to 10 intervention sessions over 12 weeks. The intervention will be tailored to individual needs, and the chosen intervention plan and goals will be discussed and agreed with participants and carers. Quantitative data on reach, retention, fidelity and dose will be collected and summarised using descriptive statistics. The feasibility outcomes that will be used to determine whether the study meets the criteria for progression to a definitive randomised controlled trial (RCT) include recruitment, delivery of the intervention, retention, data collection and acceptability of outcome measures. Acceptability of the intervention will be assessed using in-depth, semi-structured qualitative interviews with participants and healthcare professionals. DISCUSSION: Findings will inform the design of a pragmatic multi-centre RCT of the effectiveness and cost-effectiveness of the RecoverED intervention for helping the longer-term recovery of people with delirium compared to usual care. TRIAL REGISTRATION: The feasibility study was registered: ISRCTN15676570.

Emerging concepts in the CanMEDS physician competency framework.

Background: The CanMEDS physician competency framework will be updated in 2025. The revision occurs during a time of disruption and transformation to society, healthcare, and medical education caused by the COVID-19 pandemic and growing acknowledgement of the impacts of colonialism, systemic discrimination, climate change, and emerging technologies on healthcare and training. To inform this revision, we sought to identify emerging concepts in the literature related to physician competencies. Methods: Emerging concepts were defined as ideas discussed in the literature related to the roles and competencies of physicians that are absent or underrepresented in the 2015 CanMEDS framework. We conducted a literature scan, title and abstract review, and thematic analysis to identify emerging concepts. Metadata for all articles published in five medical education journals between October 1, 2018 and October 1, 2021 were extracted. Fifteen authors performed a title and abstract review to identify and label underrepresented concepts. Two authors thematically analyzed the results to identify emerging concepts. A member check was conducted. Results: 1017 of 4973 (20.5%) of the included articles discussed an emerging concept. The thematic analysis identified ten themes: Equity, Diversity, Inclusion, and Social Justice; Anti-racism; Physician Humanism; Data-Informed Medicine; Complex Adaptive Systems; Clinical Learning Environment; Virtual Care; Clinical Reasoning; Adaptive Expertise; and Planetary Health. All themes were endorsed by the authorship team as emerging concepts. Conclusion: This literature scan identified ten emerging concepts to inform the 2025 revision of the CanMEDS physician competency framework. Open publication of this work will promote greater transparency in the revision process and support an ongoing dialogue on physician competence. Writing groups have been recruited to elaborate on each of the emerging concepts and how they could be further incorporated into CanMEDS 2025.

Contexte: Le référentiel de compétences CanMEDS pour les médecins sera mis à jour en 2025. Cette révision arrive à un moment où la société, les soins de santé et l'enseignement médical sont bouleversés et en pleine mutation à cause de la pandémie de la COVID-19. On est aussi à l'heure où l'on reconnaît de plus en plus les effets du colonialisme, de la discrimination systémique, des changements climatiques et des nouvelles technologies sur les soins de santé et la formation des médecins. Pour effectuer cette révision, nous avons avons extrait de la littérature scientifique les concepts émergents se rapportant aux compétences des médecins. Méthodes: Les concepts émergents ont été définis comme des idées ayant trait aux rôles et aux compétences des médecins qui sont débattues dans la littérature, mais qui sont absentes ou sous-représentées dans le cadre CanMEDS 2015. Nous avons réalisé une recherche documentaire, un examen des titres et des résumés, et une analyse thématique pour repérer les concepts émergents. Les métadonnées de tous les articles publiés dans cinq revues d'éducation médicale entre le 1er octobre 2018 et le 1er octobre 2021 ont été extraites. Quinze auteurs ont effectué un examen des titres et des résumés pour relever et étiqueter les concepts sous-représentés. Deux auteurs ont procédé à une analyse thématique des résultats pour dégager les concepts émergents. Une vérification a été faite par les membres de l'équipe. Résultats: Parmi les 4973 articles dépouillés, 1017 (20,5 %) abordaient un concept émergent. Les dix thèmes suivants sont ressortis de l'analyse thématique: l'équité, la diversité, l'inclusion et la justice sociale; l'antiracisme; l'humanité du médecin; la médecine fondée sur les données; les systèmes adaptatifs complexes; l'environnement de l'apprentissage clinique; les soins virtuels; le raisonnement clinique; l'expertise adaptative; et la santé planétaire. L'ensemble de ces thèmes ont été approuvés comme concepts émergents par l'équipe de rédaction. Conclusion: Cet examen de la littérature a permis de relever dix concepts émergents qui peuvent servir à éclairer la révision du référentiel de compétences CanMEDS pour les médecins qui aura lieu en 2025. La publication en libre accès de ce travail favorisera la transparence du processus de révision et le dialogue continu sur les compétences des médecins. Des groupes de rédaction ont été recrutés pour développer chacun des concepts émergents et pour examiner la façon dont ils pourraient être intégrés dans la version du référentiel CanMEDS de 2025.

Evaluation of a complex intervention for prisoners with common mental health problems, near to and after release: the Engager randomised controlled trial.

BACKGROUND: Many male prisoners have significant mental health problems, including anxiety and depression. High proportions struggle with homelessness and substance misuse. AIMS: This study aims to evaluate whether the Engager intervention improves mental health outcomes following release. METHOD: The design is a parallel randomised superiority trial that was conducted in the North West and South West of England (ISRCTN11707331). Men serving a prison sentence of 2 years or less were individually allocated 1:1 to either the intervention (Engager plus usual care) or usual care alone. Engager included psychological and practical support in prison, on release and for 3-5 months in the community. The primary outcome was the Clinical Outcomes in Routine Evaluation Outcome Measure (CORE-OM), 6 months after release. Primary analysis compared groups based on intention-to-treat (ITT). RESULTS: In total, 280 men were randomised out of the 396 who were potentially eligible and agreed to participate; 105 did not meet the mental health inclusion criteria. There was no mean difference in the ITT complete case analysis between groups (92 in each arm) for change in the CORE-OM score (1.1, 95% CI -1.1 to 3.2, P = 0.325) or secondary analyses. There were no consistent clinically significant between-group differences for secondary outcomes. Full delivery was not achieved, with 77% (108/140) receiving community-based contact. CONCLUSIONS: Engager is the first trial of a collaborative care intervention adapted for prison leavers. The intervention was not shown to be effective using standard outcome measures. Further testing of different support strategies for prison with mental health problems is needed.

A conceptual model of the impact of including carers in museum programmes for people with dementia.

BACKGROUND: Research has highlighted a need for more theoretical work in arts interventions, including the role of the dyad. This study aimed to test theories from a literature review on the impact of including carers in museum programmes for people with dementia, and develop a model which can be used in other programmes to consider the impact of including carers more broadly. METHODS: Using a realist evaluation approach, theory was developed through interviews and participant-observation at six museums in the UK. FINDINGS: The impacts of including carers fell into seven broad areas - caring responsibility, session function, controlling access, preventing engagement, comparisons and losses, long-term impact of in-the-moment activities, and reducing social isolation and opening up the museum. CONCLUSIONS: Including carers may have both unanticipated benefits and negative consequences, and greater attention is needed on how both carers and people with dementia can be supported in shared sessions. Carers should be viewed as participants of programmes, and can even be the main beneficiaries, even where the programme is ostensibly 'for' the person with dementia - it's not simply that carers are the enablers of, or barriers to, the impacts on the person with dementia.

Interrogating intervention delivery and participants' emotional states to improve engagement and implementation: A realist informed multiple case study evaluation of Engager.

BACKGROUND: 'Engager' is an innovative 'through-the-gate' complex care intervention for male prison-leavers with common mental health problems. In parallel to the randomised-controlled trial of Engager (Trial registration number: ISRCTN11707331), a set of process evaluation analyses were undertaken. This paper reports on the depth multiple case study analysis part of the process evaluation, exploring how a sub-sample of prison-leavers engaged and responded to the intervention offer of one-to-one support during their re-integration into the community. METHODS: To understand intervention delivery and what response it elicited in individuals, we used a realist-informed qualitative multiple 'case' studies approach. We scrutinised how intervention component delivery lead to outcomes by examining underlying causal pathways or 'mechanisms' that promoted or hindered progress towards personal outcomes. 'Cases' (n = 24) were prison-leavers from the intervention arm of the trial. We collected practitioner activity logs and conducted semi-structured interviews with prison-leavers and Engager/other service practitioners. We mapped data for each case against the intervention logic model and then used Bhaskar's (2016) 'DREIC' analytic process to categorise cases according to extent of intervention delivery, outcomes evidenced, and contributing factors behind engagement or disengagement and progress achieved. RESULTS: There were variations in the dose and session focus of the intervention delivery, and how different participants responded. Participants sustaining long-term engagement and sustained change reached a state of 'crises but coping'. We found evidence that several components of the intervention were key to achieving this: trusting relationships, therapeutic work delivered well and over time; and an in-depth shared understanding of needs, concerns, and goals between the practitioner and participants. Those who disengaged were in one of the following states: 'Crises and chaos', 'Resigned acceptance', 'Honeymoon' or 'Wilful withdrawal'. CONCLUSIONS: We demonstrate that the 'implementability' of an intervention can be explained by examining the delivery of core intervention components in relation to the responses elicited in the participants. Core delivery mechanisms often had to be 'triggered' numerous times to produce sustained change. The improvements achieved, sustained, and valued by participants were not always reflected in the quantitative measures recorded in the RCT. The compatibility between the practitioner, participant and setting were continually at risk of being undermined by implementation failure as well as changing external circumstances and participants' own weaknesses. TRIAL REGISTRATION NUMBER: ISRCTN11707331, Wales Research Ethics Committee, Registered 02-04-2016-Retrospectively registered https://doi.org/10.1186/ISRCTN11707331.

Economic evaluation of a complex intervention (Engager) for prisoners with common mental health problems, near to and after release: a cost-utility and cost-consequences analysis.

BACKGROUND: People in prison experience a range of physical and mental health problems. Evaluating the effectiveness and efficiency of prison-based interventions presents a number of methodological challenges. We present a case study of an economic evaluation of a prison-based intervention ("Engager") to address common mental health problems. METHODS: Two hundred and eighty people were recruited from prisons in England and randomised to Engager plus usual care or usual care. Participants were followed up for 12 months following release from prison. The primary analysis is the cost per quality-adjusted life year (QALY) gained of Engager compared to usual care from a National Health Service (NHS) perspective with QALYs calculated using the CORE 6 Dimension. A cost-consequences analysis evaluated cross-sectoral costs and a range of outcomes. RESULTS: From an NHS perspective, Engager cost an additional £2737 per participant (95% of iterations between £1029 and £4718) with a mean QALY difference of - 0.014 (95% of iterations between - 0.045 and 0.017). For the cost-consequences, there was evidence of improved access to substance misuse services 12 months post-release (odds ratio 2.244, 95% confidence Interval 1.304-3.861). CONCLUSION: Engager provides a rare example of a cost-utility analysis conducted in prisons and the community using patient-completed measures. Although the results from this trial show no evidence that Engager is cost-effective, the results of the cost-consequences analysis suggest that follow-up beyond 12 months post-release using routine data may provide additional insights into the effectiveness of the intervention and the importance of including a wide range of costs and outcomes in prison-based economic evaluations. TRIAL REGISTRATION: (ISRCTN11707331).

What is the volume, diversity and nature of recent, robust evidence for the use of peer support in health and social care? An evidence and gap map.

Background: Peer support interventions involve people drawing on shared personal experience to help one another improve their physical or mental health, or reduce social isolation. If effective, they may also lessen the demand on health and social care services, reducing costs. However, the design and delivery of peer support varies greatly, from the targeted problem or need, the setting and mode of delivery, to the number and content of sessions. Robust evidence is essential for policymakers commissioning peer support and practitioners delivering services in health care and community settings. This map draws together evidence on different types of peer support to support the design and delivery of interventions. Objectives: The aim of this map was to provide an overview of the volume, diversity and nature of recent, high quality evidence on the effectiveness and cost-effectiveness of the use of peer support in health and social care. Search Methods: We searched MEDLINE, seven further bibliographic databases, and Epistemonikos for systematic reviews (in October 2020), randomised controlled trials (in March 2021) and economic evaluations (in May 2021) on the effectiveness of peer support interventions in health and social care. We also conducted searches of Google Scholar, two trial registers, PROSPERO, and completed citation chasing on included studies. Selection Criteria: Systematic reviews, randomised controlled trials and economic evaluations were included in the map. Included studies focused on adult populations with a defined health or social care need, were conducted in high-income countries, and published since 2015. Any measure of effectiveness was included, as was any form of peer support providing the peer had shared experience with the participant and a formalised role. Data Collection and Analysis: Data were extracted on the type of peer support intervention and outcomes assessed in included studies. Standardised tools were used to assess study quality for all studies: assessing the methodological quality of systematic reviews 2 for systematic reviews; Cochrane risk of bias tool for randomised controlled trials; and consensus health economic criteria list for economic evaluations. Main Results: We included 91 studies: 32 systematic reviews; 52 randomised controlled trials; and 7 economic evaluations. Whilst most included systematic reviews and economic evaluations were assessed to be of low or medium quality, the majority of randomised controlled trials were of higher quality. There were concentrations of evidence relating to different types of peer support, including education, psychological support, self-care/self-management and social support. Populations with long-term health conditions were most commonly studied. The majority of studies measured health-related indicators as outcomes; few studies assessed cost-effectiveness. Studies were unevenly distributed geographically, with most being conducted in the USA. Several gaps were evident regarding the delivery of peer support, particularly the integration of peers and professionals in delivering support and interventions of longer duration. Authors' Conclusions: Although there is evidence available to inform the commissioning and delivery of peer support in health and social care, there are also clear gaps that need to be addressed to further support provision, particularly regarding cost-effectiveness. The effectiveness of peer support in different countries, with varying health and social care systems, is a priority for future research, as is the integration of peers with professionals in delivering peer support.

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

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.

Learning to go to the toilet is an important skill. Becoming continent involves knowing when you need to go, holding on until you find the right place, going to the toilet, cleaning and getting dressed again. Many children and young people with special educational needs or disability can learn to become clean and dry, sometimes with help or equipment. Advice is not consistent about the best ways to assess and treat continence problems for children and young people with neurodisability. This research aimed to find out how families and professionals measure and improve continence, and if there was evidence about which treatments are useful. We brought together the results of studies that have tested ways of assessing and improving toilet training for children and young people with special educational needs or disability. We carried out four online surveys with health professionals, education and care staff, parent carers, and disabled young people. We brought together and explained the findings from the surveys and the studies with help from parent carers and professionals. Approaches to improving continence vary depending on whether or not the child or young person's nerves and muscles that control their bladder and bowel work properly. Children and young people with conditions affecting the nerves and muscles of their bladder and bowel are often helped by medical or surgical treatments. Children and young people with conditions such as learning disability or autism may benefit from behavioural therapies to help them learn to use the toilet. There is poor evidence for how well treatments work and whether or not they are value for money. More and better research is needed to make sure that children and young people are able to be clean and dry without pads, maximising their independence, dignity and comfort. This also requires an adequate number of fully accessible toilets in the community.

Economic Aspects of Delivering Primary Care Services: An Evidence Synthesis to Inform Policy and Research Priorities.

Policy Points The 2018 Declaration of Astana reemphasized the importance of primary health care and its role in achieving universal health coverage. While there is a large amount of literature on the economic aspects of delivering primary care services, there is a need for more comprehensive overviews of this evidence. In this article, we offer such an overview. Evidence suggests that there are several strategies involving coverage, financing, service delivery, and governance arrangements which can, if implemented, have positive economic impacts on the delivery of primary care services. These include arrangements such as worker task-shifting and telemedicine. The implementation of any such arrangements, based on positive economic evidence, should carefully account for potential impacts on overall health care access and quality. There are many opportunities for further research, with notable gaps in evidence on the impacts of increasing primary care funding or the overall supply of primary care services. CONTEXT: The 2018 Declaration of Astana reemphasized the importance of primary health care and its role in achieving universal health coverage. To strengthen primary health care, policymakers need guidance on how to allocate resources in a manner that maximizes its economic benefits. METHODS: We collated and synthesized published systematic reviews of evidence on the economic aspects of different models of delivering primary care services. Building on previous efforts, we adapted existing taxonomies of primary care components to classify our results according to four categories: coverage, financing, service delivery, and governance. FINDINGS: We identified and classified 109 reviews that met our inclusion criteria according to our taxonomy of primary care components: coverage, financing, service delivery, and governance arrangements. A significant body of evidence suggests that several specific primary care arrangements, such as health workers' task shifting and telemedicine, can have positive economic impacts (such as lower overall health care costs). Notably absent were reviews on the impact of increasing primary care funding or the overall supply of primary care services. CONCLUSIONS: There is a great opportunity for further research to systematically examine the broader economic impacts of investing in primary care services. Despite progress over the last decade, significant evidence gaps on the economic implications of different models of primary care services remain, which could help inform the basis of future research efforts.

The impact of including carers in museum programmes for people with dementia: a realist review.

Background: "In the moment" museum programmes for people with dementia (PwD) are an increasingly popular way of supporting people to live well. Most programmes include carers, though it is not well understood what effects, if any, their inclusion has. This review aimed to understand how including carers in museum programmes impacts the PwD, the carer, and the relationship between them. Methods: A realist review of peer-reviewed and grey literature was conducted to develop theory in answer to the research questions. Results: Twenty-three documents were included and 15 theory statements were developed within four themes: seeing the PwD in a new way, shared respite, excess disability, and reduced social isolation. Conclusions: As both positive and negative impacts were found, it is important to consider that programmes may not be beneficial for all dyads. The review offers recommendations to support positive outcomes for dyads, highlights gaps in the literature, and suggestions for further research.

Interventions to support recovery following an episode of delirium: A realist synthesis.

OBJECTIVES: Persistent delirium is associated with poor outcomes in older adults but little is known about how to support longer-term recovery from delirium. The aim of this review was to identify and synthesise literature to understand mechanisms of recovery from delirium as a basis for designing an intervention that enables more effective recovery. METHODS: A systematic search of literature relevant to the research question was conducted in two phases. Phase one focused on studies evaluating the efficacy of interventions to support recovery from delirium, and stage two used a wider search strategy to identify other relevant literature including similar patient groups and wider methodologies. Synthesis of the literature followed realist principles. RESULTS: Phase one identified four relevant studies and stage two identified a further forty-six studies. Three interdependent recovery domains and four recovery facilitators were identified. Recovery domains were 1) support for physical recovery through structured exercise programmes; 2) support for cognitive recovery through reality orientation and cognitive stimulation; 3) support for emotional recovery through talking with skilled helpers. Recovery facilitators were 1) involvement and support of carers; 2) tailoring intervention to individual needs, preferences and abilities; 3) interpersonal connectivity and continuity in relationships and; 4) facilitating positive expressions of self. CONCLUSIONS: Multicomponent interventions with elements that address all recovery domains and facilitators may have the most promise. Future research should build on this review and explore patients', carers', and professionals' tacit theories about the persistence of delirium or recovery from delirium in order to inform an effective intervention.

A "Rapid Best-Fit" model for framework synthesis: Using research objectives to structure analysis within a rapid review of qualitative evidence.

The short time frame associated with rapid reviews can be challenging for researchers conducting qualitative evidence synthesis. In these circumstances a Best-Fit Framework Synthesis, drawing upon existing theory and/or research, may be conducted to rapidly make sense of qualitative evidence. This article discusses a "Rapid Best-Fit" approach to conducting Framework Synthesis within an 6-week rapid systematic review of qualitative evidence. In the absence of a suitable theoretical model to inform the synthesis, we drew upon our research objectives to structure a framework, and to identify the studies which contained the most relevant data. Themes from these studies were used to revise the initial framework before inductive thematic synthesis finalized theme content. This "Rapid Best-Fit" approach yielded results aligned with the needs of the commissioners of the review and is a useful addition to qualitative synthesis methods, allowing for the incorporation of diverse views and experiences into fast-paced decision making scenarios.

Evaluating enhanced recovery after surgery: time to cover new ground and discover the missing patient voice.

Multicomponent peri-operative interventions offer to accelerate patient recovery and improve cost-effectiveness. The recent National Institute of Health Research-commissioned evidence synthesis review by Nunns et al. considers the effectiveness and cost-effectiveness of all types of multicomponent interventions for older adults undergoing elective inpatient surgery. Enhanced recovery programmes (ERPs) were the most commonly evaluated intervention. An association between ERPs and decreased length of stay was observed, whilst complication rates and time to recovery were static or sometimes reduced. Important areas which lack research in the context of ERPs are patient-reported outcome measures, patients with complex needs and assessment of factors pertaining to successful ERP implementation. The next generation of ERP studies should seek to develop our understanding in these key areas.

Understanding why primary care doctors leave direct patient care: a systematic review of qualitative research.

BACKGROUND: UK general practitioners (GPs) are leaving direct patient care in significant numbers. We undertook a systematic review of qualitative research to identify factors affecting GPs' leaving behaviour in the workforce as part of a wider mixed methods study (ReGROUP). OBJECTIVE: To identify factors that affect GPs' decisions to leave direct patient care. METHODS: Qualitative interview-based studies were identified and their quality was assessed. A thematic analysis was performed and an explanatory model was constructed providing an overview of factors affecting UK GPs. Non-UK studies were considered separately. RESULTS: Six UK interview-based studies and one Australian interview-based study were identified. Three central dynamics that are key to understanding UK GP leaving behaviour were identified: factors associated with low job satisfaction, high job satisfaction and those linked to the doctor-patient relationship. The importance of contextual influence on job satisfaction emerged. GPs with high job satisfaction described feeling supported by good practice relationships, while GPs with poor job satisfaction described feeling overworked and unsupported with negatively impacted doctor-patient relationships. CONCLUSIONS: Many GPs report that job satisfaction directly relates to the quality of the doctor-patient relationship. Combined with changing relationships with patients and interfaces with secondary care, and the gradual sense of loss of autonomy within the workplace, many GPs report a reduction in job satisfaction. Once job satisfaction has become negatively impacted, the combined pressure of increased patient demand and workload, together with other stress factors, has left many feeling unsupported and vulnerable to burn-out and ill health, and ultimately to the decision to leave general practice.

Strategies to identify individuals with monogenic diabetes: results of an economic evaluation.

OBJECTIVES: To evaluate and compare the lifetime costs associated with strategies to identify individuals with monogenic diabetes and change their treatment to more appropriate therapy. DESIGN: A decision analytical model from the perspective of the National Health Service (NHS) in England and Wales was developed and analysed. The model was informed by the literature, routinely collected data and a clinical study conducted in parallel with the modelling. SETTING: Secondary care in the UK. PARTICIPANTS: Simulations based on characteristics of patients diagnosed with diabetes <30 years old. INTERVENTIONS: Four test-treatment strategies to identify individuals with monogenic diabetes in a prevalent cohort of diabetics diagnosed under the age of 30 years were modelled: clinician-based genetic test referral, targeted genetic testing based on clinical prediction models, targeted genetic testing based on biomarkers, and blanket genetic testing. The results of the test-treatment strategies were compared with a strategy of no genetic testing. PRIMARY AND SECONDARY OUTCOME MEASURES: Discounted lifetime costs, proportion of cases of monogenic diabetes identified. RESULTS: Based on current evidence, strategies using clinical characteristics or biomarkers were estimated to save approximately £100-£200 per person with diabetes over a lifetime compared with no testing. Sensitivity analyses indicated that the prevalence of monogenic diabetes, the uptake of testing, and the frequency of home blood glucose monitoring had the largest impact on the results (ranging from savings of £400-£50 per person), but did not change the overall findings. The model is limited by many model inputs being based on very few individuals, and some long-term data informed by clinical opinion. CONCLUSIONS: Costs to the NHS could be saved with targeted genetic testing based on clinical characteristics or biomarkers. More research should focus on the economic case for the use of such strategies closer to the time of diabetes diagnosis. TRIAL REGISTRATION NUMBER: NCT01238380.

'Mind the gaps': the accessibility and implementation of an effective depression relapse prevention programme in UK NHS services: learning from mindfulness-based cognitive therapy through a mixed-methods study.

OBJECTIVES: Mindfulness-based cognitive therapy (MBCT) is an evidence-based approach for people at risk of depressive relapse to support their long-term recovery. However, despite its inclusion in guidelines, there is an 'implementation cliff'. The study objective was to develop a better explanation of what facilitates MBCT implementation. SETTING: UK primary and secondary care mental health services. DESIGN, PARTICIPANTS AND METHODS: A national two-phase, multi-method qualitative study was conducted, which was conceptually underpinned by the Promoting Action on Research Implementation in Health Services framework. Phase I involved interviews with stakeholders from 40 service providers about current provision of MBCT. Phase II involved 10 purposively sampled case studies to obtain a more detailed understanding of MBCT implementation. Data were analysed using adapted framework analysis, refined through stakeholder consultation. RESULTS: Access to MBCT is variable across the UK services. Where available, services have adapted MBCT to fit their context by integrating it into their care pathways. Evidence was often important to implementation but took different forms: the NICE depression guideline, audits, evaluations, first person accounts, experiential taster sessions and pilots. These were used to build a platform from which to develop MBCT services. The most important aspect of facilitation was the central role of the MBCT implementers. These were generally self-designated individuals who 'championed' grass-roots implementation. Our explanatory framework mapped out a prototypical implementation journey, often over many years with a balance of bottom-up and top-down factors influencing the fit of MBCT into service pathways. 'Pivot points' in the implementation journey provided windows of either challenge or opportunity. CONCLUSIONS: This is one of the largest systematic studies of the implementation of a psychological therapy. While access to MBCT across the UK is improving, it remains patchy. The resultant explanatory framework about MBCT implementation provides a heuristic that informed an implementation resource.