Sharing real-world data for public benefit: a qualitative exploration of stakeholder views and perceptions.

BACKGROUND: There has been an increasing interest in the use of "real-world" data to inform care decision making that could lead to public health benefit. Routinely collected service and activity data associated with the administration of care services and service-users (such as electronic health records or electronic social care records), hold potential to better inform effective and responsive decision-making about health and care services provided to national and local populations. This study sought to gain an in-depth understanding regarding the potential to unlock real world data that was held in individual organisations, to better inform public health decision-making. This included sharing data between and within health service providers and local governing authorities, but also with university researchers to inform the evidence base. METHODS: We used qualitative methods and carried out a series of online workshops and interviews with stakeholders (senior-level decision-makers and service leads, researchers, data analysts, those with a legal and governance role, and members of the public). We identified recurring themes in initial workshops, and explored these with participants in subsequent workshops. By this iterative process we further refined the themes identified, compared views and perceptions amongst different stakeholder groups, and developed recommendations for action. RESULTS: Our study identified key elements of context and timing, the need for a different approach, and obstacles including governmental and legal, organisational features, and process factors which adversely affect the sharing of real world data. The findings also highlighted a need for improved communication about data for secondary uses to members of the public. CONCLUSION: The Covid-19 pandemic context and changes to organisational structures in the health service in England have provided opportunities to address data sharing challenges. Change at national and local level is required, within current job roles and generating new jobs roles focused on the use and sharing of real-world data. The study suggests that actions can be taken to unlock the potential of real-world data for public health benefit, and provides a series of recommendations at a national level, for organisational leaders, those in data roles and those in public engagement roles.

The conduct and reporting of qualitative evidence syntheses in health and social care guidelines: a content analysis.

BACKGROUND: This paper is part of a broader investigation into the ways in which health and social care guideline producers are using qualitative evidence syntheses (QESs) alongside more established methods of guideline development such as systematic reviews and meta-analyses of quantitative data. This study is a content analysis of QESs produced over a 5-year period by a leading provider of guidelines for the National Health Service in the UK (the National Institute for Health and Care Excellence) to explore how closely they match a reporting framework for QES. METHODS: Guidelines published or updated between Jan 2015 and Dec 2019 were identified via searches of the National Institute for Health and Care excellence (NICE) website. These guidelines were searched to identify any QES conducted during the development of the guideline. Data relating to the compliance of these syntheses against a reporting framework for QES (ENTREQ) were extracted and compiled, and descriptive statistics used to provide an analysis of the of QES conduct, reporting and use by this major international guideline producer. RESULTS: QES contributed, in part, to 54 out of a total of 192 guidelines over the five-year period. Although methods for producing and reporting QES have changed substantially over the past decade, this study found that there has been little change in the number or quality of NICE QESs over time. The largest predictor of quality was the centre or team which undertook the synthesis. Analysis indicated that elements of review methods which were similar to those used in quantitative systematic reviews tended to be carried out well and mostly matched the criteria in the reporting framework, but review methods which were more specific to a QES tended to be carried out less well, with fewer examples of criteria in the reporting framework being achieved. CONCLUSION: The study suggests that use, conduct and reporting of optimal QES methods requires development, as over time the quality of reporting of QES both overall, and by specific centres, has not improved in spite of clearer reporting frameworks and important methodological developments. Further staff training in QES methods may be helpful for reviewers who are more familiar with conventional forms of systematic review if the highest standards of QES are to be achieved. There seems potential for greater use of evidence from qualitative research during guideline development.

Factors that influence mental health of university and college students in the UK: a systematic review.

BACKGROUND: Worsening mental health of students in higher education is a public policy concern and the impact of measures to reduce transmission of COVID-19 has heightened awareness of this issue. Preventing poor mental health and supporting positive mental wellbeing needs to be based on an evidence informed understanding what factors influence the mental health of students. OBJECTIVES: To identify factors associated with mental health of students in higher education. METHODS: We undertook a systematic review of observational studies that measured factors associated with student mental wellbeing and poor mental health. Extensive searches were undertaken across five databases. We included studies undertaken in the UK and published within the last decade (2010-2020). Due to heterogeneity of factors, and diversity of outcomes used to measure wellbeing and poor mental health the findings were analysed and described narratively. FINDINGS: We included 31 studies, most of which were cross sectional in design. Those factors most strongly and consistently associated with increased risk of developing poor mental health included students with experiences of trauma in childhood, those that identify as LGBTQ and students with autism. Factors that promote wellbeing include developing strong and supportive social networks. Students who are prepared and able to adjust to the changes that moving into higher education presents also experience better mental health. Some behaviours that are associated with poor mental health include lack of engagement both with learning and leisure activities and poor mental health literacy. CONCLUSION: Improved knowledge of factors associated with poor mental health and also those that increase mental wellbeing can provide a foundation for designing strategies and specific interventions that can prevent poor mental health and ensuring targeted support is available for students at increased risk.

Is working in later life good for your health? A systematic review of health outcomes resulting from extended working lives.

BACKGROUND: Work, rather than unemployment, is recognised as being good for health, but there may be an age when the benefits are outweighed by adverse impacts. As countries around the world increase their typical retirement age, the potential effect on population health and health inequalities requires scrutiny. METHODS: We carried out a systematic review of literature published since 2011 from developed countries on the health effects of employment in those over 64 years of age. We completed a narrative synthesis and used harvest plots to map the direction and volume of evidence for the outcomes reported. We followed the Preferred Reporting Items for Systematic Reviews (PRISMA) checklist in our methods and reporting. RESULTS: We identified seventeen relevant studies, which were of cohort or cross-sectional design. The results indicate evidence of beneficial or neutral effects from extended working on overall health status and physical health for many employees, and mixed effects on mental health. The benefits reported however, are most likely to be for males, those working part-time or reducing to part-time, and employees in jobs which are not low quality or low reward. CONCLUSIONS: Extending working life (particularly part time) may have benefits or a neutral effect for some, but adverse effects for others in high demand or low reward jobs. There is the potential for widening health inequalities between those who can choose to reduce their working hours, and those who need to continue working full time for financial reasons. There is a lack of evidence for effects on quality of life, and a dearth of interventions enabling older workers to extend their healthy working life.

Effects of service changes affecting distance/time to access urgent and emergency care facilities on patient outcomes: a systematic review.

BACKGROUND: Reconfiguration of urgent and emergency care services often increases travel time/distance for patients to reach an appropriate facility. Evidence of the effects of reconfiguration is important for local communities and commissioners and providers of health services. METHODS: We performed a systematic review of the evidence regarding effects of service reconfigurations that increase the time/distance for some patients to reach an urgent and emergency care (UEC) facility. We searched seven bibliographic databases from 2000 to February 2019 and used citation tracking and reference lists to identify additional studies. We included studies of any design that compared outcomes for people with conditions requiring emergency treatment before and after service reconfiguration with an associated change in travel time/distance to access UEC. Studies had to be conducted in the UK or other developed countries. Data extraction and quality assessment (using the Joanna Briggs Institute checklist for quasi-experimental studies) were undertaken by a single reviewer with a sample checked for accuracy and consistency. We performed a narrative synthesis of the included studies. Overall strength of evidence was assessed using a previously published method that considers volume, quality and consistency. RESULTS: We included 12 studies, of which six were conducted in the USA, two in the UK and four in other European countries. The studies used a variety of observational designs, with before-after and cohort designs being most common. Only two studies included an independent control site/sites where no reconfiguration had taken place. The reconfigurations evaluated in these studies reported relatively small effects on average travel times/distance. DISCUSSION: For studies of general UEC populations, there was no convincing evidence as to whether reconfiguration affected mortality risk. However, evidence of increased risk was identified from studies of patients with acute myocardial infarction, particularly 1 to 4 years after reconfiguration. Evidence for other conditions was inconsistent or very limited. CONCLUSIONS: We found insufficient evidence to determine whether increased distance to UEC increases mortality risk for the general population of people requiring UEC, although this conclusion may not extend to people with specific conditions.

Current methods for development of rapid reviews about diagnostic tests: an international survey.

BACKGROUND: Rapid reviews (RRs) have emerged as an efficient alternative to time-consuming systematic reviews-they can help meet the demand for accelerated evidence synthesis to inform decision-making in healthcare. The synthesis of diagnostic evidence has important methodological challenges. Here, we performed an international survey to identify the current practice of producing RRs for diagnostic tests. METHODS: We developed and administered an online survey inviting institutions that perform RRs of diagnostic tests from all over the world. RESULTS: All participants (N = 25) reported the implementation of one or more methods to define the scope of the RR; however, only one strategy (defining a structured question) was used by ≥90% of participants. All participants used at least one methodological shortcut including the use of a previous review as a starting point (92%) and the use of limits on the search (96%). Parallelization and automation of review tasks were not extensively used (48 and 20%, respectively). CONCLUSION: Our survey indicates a greater use of shortcuts and limits for conducting diagnostic test RRs versus the results of a recent scoping review analyzing published RRs. Several shortcuts are used without knowing how their implementation affects the results of the evidence synthesis in the setting of diagnostic test reviews. Thus, a structured evaluation of the challenges and implications of the adoption of these RR methods is warranted.

Learning across the UK: a review of public health systems and policy approaches to early child development since political devolution.

BACKGROUND: Giving children the best start in life is critical for their future health and wellbeing. Political devolution in the UK provides a natural experiment to explore how public health systems contribute to children's early developmental outcomes across four countries. METHOD: A systematic literature review and input from a stakeholder group was used to develop a public health systems framework. This framework then informed analysis of public health policy approaches to early child development. RESULTS: A total of 118 studies met the inclusion criteria. All national policies championed a 'prevention approach' to early child development. Political factors shaped divergence, with variation in national conceptualizations of child development ('preparing for life' versus 'preparing for school') and pre-school provision ('universal entitlement' or 'earned benefit'). Poverty and resourcing were identified as key system factors that influenced outcomes. Scotland and Wales have enacted distinctive legislation focusing on wider determinants. However, this is limited by the extent of devolved powers. CONCLUSION: The systems framework clarifies policy complexity relating to early child development. The divergence of child development policies in the four countries and, particularly, the explicit recognition in Scottish and Welsh policy of wider determinants, creates scope for this topic to be a tracer area to compare UK public health systems longer term.

The optimisation of noninvasive ventilation in amyotrophic lateral sclerosis: a systematic review.

BACKGROUND: Noninvasive ventilation (NIV) prolongs survival and quality of life in amyotrophic lateral sclerosis (ALS); however, its benefits depend upon the optimisation of both ventilation and adherence. We aimed to identify factors associated with effective initiation and ongoing use of NIV in ALS to develop evidence-based guidance and identify areas for further research. METHODS: We searched 11 electronic databases (January 1998 to May 2018) for all types of quantitative and qualitative studies. Supplementary grey literature searches were conducted. Records were screened against eligibility criteria, data were extracted from included studies and risk of bias was assessed. We present findings using a narrative synthesis. RESULTS: We screened 2430 unique records and included 52 quantitative and six qualitative papers. Factors reported to be associated with NIV optimisation included coordinated multidisciplinary care, place of initiation, selection of interfaces, ventilator modes and settings appropriate for the individual patient, and adequate secretion management. The literature indicated that patients with significant bulbar dysfunction can still derive considerable benefit from NIV if their needs are met. Research emphasises that obstructive airway events, mask leak and uncontrolled secretions should be addressed by adjustments to the interface and machine settings, and the concomitant use of cough augmentation. CONCLUSION: This review highlights that NIV optimisation requires an individualised approach to respiratory management tailored to the differing needs of each patient. Ultimately, this should lead to improved survival and quality of life. This review expands on recommendations in current international guidelines for NIV use in ALS and identifies areas for future research.

Towards greater understanding of implementation during systematic reviews of complex healthcare interventions: the framework for implementation transferability applicability reporting (FITAR).

BACKGROUND: There have been calls for greater consideration of applicability and transferability in systematic reviews, to improve their usefulness in informing policy and practice. Understanding how evidence is, or is not applicable and transferable to varying local situations and contexts, is a key challenge for systematic review synthesis in healthcare. Assessing applicability and transferability in systematic reviews is reported to be difficult, particularly in reviews of complex interventions. There is a need for exploration of factors perceived to be important by policy-makers, and for further guidance on which items should be reported. In this paper we focus on the process of development of a framework that can be used by systematic reviewers to identify and report data across studies relating to applicability and transferability. METHODS: The framework was developed by scrutinising existing literature on applicability and transferability, examining data during a systematic review of highly complex changes to health service delivery, and was informed by stakeholder engagement. The items of the framework were thus grounded in both data identified during a real review, and stakeholder input. The paper describes examples of data identified using the framework during a review of integrated care interventions, and outlines how it informed analysis and reporting of the review findings. RESULTS: The Framework for Implementation Transferability Applicability Reporting (FITAR) comprises 44 items which can be used to structure analysis and reporting across studies during systematic reviews of complex interventions. The framework prompts detailed consideration of contextual data during extraction and reporting, within areas of: patient type and populations; type of organisations and systems; financial and commissioning processes; systems leadership elements; features of services; features of the workforce; and finally elements of the interventions/initiatives. CONCLUSIONS: Use of the framework during our review of complex healthcare interventions helped the review team to surface contextual data, which may not be commonly extracted, analysed and reported. Further exploration and evaluation of systems for identifying and reporting these factors during reviews is required.

The effects of integrated care: a systematic review of UK and international evidence.

BACKGROUND: Healthcare systems around the world have been responding to the demand for better integrated models of service delivery. However, there is a need for further clarity regarding the effects of these new models of integration, and exploration regarding whether models introduced in other care systems may achieve similar outcomes in a UK national health service context. METHODS: The study aimed to carry out a systematic review of the effects of integration or co-ordination between healthcare services, or between health and social care on service delivery outcomes including effectiveness, efficiency and quality of care. Electronic databases including MEDLINE; Embase; PsycINFO; CINAHL; Science and Social Science Citation Indices; and the Cochrane Library were searched for relevant literature published between 2006 to March 2017. Online sources were searched for UK grey literature, and citation searching, and manual reference list screening were also carried out. Quantitative primary studies and systematic reviews, reporting actual or perceived effects on service delivery following the introduction of models of integration or co-ordination, in healthcare or health and social care settings in developed countries were eligible for inclusion. Strength of evidence for each outcome reported was analysed and synthesised using a four point comparative rating system of stronger, weaker, inconsistent or limited evidence. RESULTS: One hundred sixty seven studies were eligible for inclusion. Analysis indicated evidence of perceived improved quality of care, evidence of increased patient satisfaction, and evidence of improved access to care. Evidence was rated as either inconsistent or limited regarding all other outcomes reported, including system-wide impacts on primary care, secondary care, and health care costs. There were limited differences between outcomes reported by UK and international studies, and overall the literature had a limited consideration of effects on service users. CONCLUSIONS: Models of integrated care may enhance patient satisfaction, increase perceived quality of care, and enable access to services, although the evidence for other outcomes including service costs remains unclear. Indications of improved access may have important implications for services struggling to cope with increasing demand. TRIAL REGISTRATION: Prospero registration number: 42016037725 .

A comfort assessment of existing cervical orthoses.

PURPOSE: Identify location and intensity of discomfort experienced by healthy participants wearing cervical orthoses. METHOD: Convenience sample of 34 healthy participants wore Stro II, Philadelphia, Headmaster, and AspenVista® cervical orthoses for four-hour periods. Participants reported discomfort level (scale 0-6) and location. RESULTS: Participants reported mean discomfort for all orthoses over the four-hour test between 'a little discomfort' and 'very uncomfortable' (mean discomfort score = 1.64, SD = 1.50). Seven participants prematurely stopped tests due to pain and six reported maximum discomfort scores. Significant linear increase in discomfort with duration of wear was found for all orthoses. Significantly less discomfort was reported with Stro II than Headmaster and Philadelphia. Age correlated with greater perceived discomfort. Orthoses differed in the location discomfort was experienced. CONCLUSION: Existing cervical orthoses cause discomfort influenced by design and duration of wear with orthoses' design the more significant factor. This work informed the design of a new orthosis and future orthoses developments. Practitioner Summary: The purpose of this study was to gain greater knowledge about the discomfort caused by wearing of existing neck orthoses in order to inform the design and development of a new neck orthosis. This study gathers empirical data from a surrogate population and concludes that orthosis design is more influential than the duration of wear.

Supporting public involvement in interview and other panels: a systematic review.

BACKGROUND: Members of the public are increasingly being invited to become members of a variety of different panels and boards. OBJECTIVE: This study aimed to systematically search the literature to identify studies relating to support or training provided to members of the public who are asked to be members of an interview panel. SEARCH STRATEGY: A systematic search for published and unpublished studies was carried out from June to September 2015. The search methods included electronic database searching, reference list screening, citation searching and scrutinizing online sources. INCLUSION CRITERIA: We included studies of any design including published and unpublished documents which outlined preparation or guidance relating to public participants who were members of interview panels or representatives on other types of panels or committees. DATA SYNTHESIS: Results were synthesised via narrative methods. MAIN RESULTS: Thirty-six documents were included in the review. Scrutiny of this literature highlighted ten areas which require consideration when including members of the public on interview panels: financial resources; clarity of role; role in the interview process; role in evaluation; training; orientation/induction; information needs; terminology; support; and other public representative needs such as timing, accessibility and support with information technology. DISCUSSION AND CONCLUSIONS: The results of the review emphasize a range of elements that need to be fully considered when planning the involvement of public participants on interview panels. It highlights potential issues relating to the degree of involvement of public representatives in evaluating/grading decisions and the need for preparation and on-going support.

Decision-making and referral processes for patients with motor neurone disease: a qualitative study of GP experiences and evaluation of a new decision-support tool.

BACKGROUND: The diagnosis of motor neurone disease (MND) is known to be challenging and there may be delay in patients receiving a correct diagnosis. This study investigated the referral process for patients who had been diagnosed with MND, and whether a newly-developed tool (The Red Flags checklist) might help General Practitioners (GPs) in making referral decisions. METHODS: We carried out interviews with GPs who had recently referred a patient diagnosed with MND, and interviews/surveys with GPs who had not recently referred a patient with suspected MND. We collected data before the Red Flags checklist was introduced; and again one year later. We analysed the data to identify key recurring themes. RESULTS: Forty two GPs took part in the study. The presence of fasciculation was the clinical feature that most commonly led to consideration of a potential MND diagnosis. GPs perceived that their role was to make onward referrals rather than attempting to make a diagnosis, and delays in correct diagnosis tended to occur at the specialist level. A quarter of participants had some awareness of the newly-developed tool; most considered it useful, if incorporated into existing systems. CONCLUSIONS: While fasciculation is the most common symptom associated with MND, other bulbar, limb or respiratory features, together with progression should be considered. There is a need for further research into how decision-support tools should be designed and provided, in order to best assist GPs with referral decisions. There is also a need for further work at the level of secondary care, in order that referrals made are re-directed appropriately.

The state of the art in non-pharmacological interventions for developmental stuttering. Part 2: qualitative evidence synthesis of views and experiences.

BACKGROUND: A range of interventions have been developed to treat stuttering in recent years. The effectiveness of these interventions has largely been assessed in studies focusing on the impact of specific types of therapy on patient outcomes. Relatively little is known about the factors that influence how the delivery and impact of different types of intervention may be experienced from the perspective of both people who deliver as well as those who receive interventions. AIMS: To synthesize the available evidence in relation to factors that might enhance or mitigate against successful outcomes following interventions for stuttering by identifying and synthesizing relevant qualitative research that explored the experiences of people delivering and receiving interventions that aim to improve fluency. METHODS & PROCEDURES: We carried out a systematic review including research that had used in-depth interviews and focus groups and conducted a substantive qualitative analysis of the data collected. Included study populations were either adults or children affected by a diagnosed stutter and/or providers of therapy for stuttering. An iterative approach was used to search for published qualitative evidence in relevant databases from 1990 to 2014. Retrieved citations were sifted for relevance and the data from articles that met the inclusion criteria were extracted. Each included paper was assessed for quality and a thematic analysis and synthesis of findings was carried out. MAIN CONTRIBUTION: Synthesized qualitative evidence highlights the changing experiences for people who stutter both historically and, for individuals, over the life course. Barriers and facilitators to the implementation of interventions for stuttering are encountered at the individual, intervention, interpersonal and social levels. Interventions may be particularly pertinent at certain transition points in the life course. Attention to emotional as well as practical aspects of stuttering is valued by people receiving therapy. The client-therapist relationship and support from others are also key factors in achieving successful outcomes. CONCLUSIONS & IMPLICATIONS: A synthesis of qualitative findings from published papers has added to the effectiveness data reported in an accompanying paper in understanding how stuttering impacts on people across the life course. Evidence suggests that a client-centred and individually tailored approach enhances the likelihood of successful intervention outcomes through attention to emotional, situational and practical needs.

The state of the art in non-pharmacological interventions for developmental stuttering. Part 1: a systematic review of effectiveness.

BACKGROUND: The growing range of available treatment options for people who stutter presents a challenge for clinicians, service managers and commissioners, who need to have access to the best available treatment evidence to guide them in providing the most appropriate interventions. While a number of reviews of interventions for specific populations or a specific type of intervention have been carried out, a broad-based systematic review across all forms of intervention for adults and children was needed to provide evidence to underpin future guidelines, inform the implementation of effective treatments and identify future research priorities. AIMS: To identify and synthesize the published research evidence on the clinical effectiveness of the broad range of non-pharmacological interventions for the management of developmental stuttering. METHODS & PROCEDURES: A systematic review of the literature reporting interventions for developmental stuttering was carried out between August 2013 and April 2014. Searches were not limited by language or location, but were restricted by date to studies published from 1990 onwards. Methods for the identification of relevant studies included electronic database searching, reference list checking, citation searching and hand searching of key journals. Appraisal of study quality was performed using a tool based on established criteria for considering risk of bias. Due to heterogeneity in intervention content and outcomes, a narrative synthesis was completed. MAIN CONTRIBUTION: The review included all available types of intervention and found that most may be of benefit to at least some people who stutter. There was evidence, however, of considerable individual variation in response to these interventions. The review indicated that effects could be maintained following all types of interventions (although this was weakest with regard to feedback and technology interventions). CONCLUSIONS: This review highlights a need for greater consensus with regard to the key outcomes used to evaluate stuttering interventions, and also a need for enhanced understanding of the process whereby interventions effect change. Further analysis of the variation in effectiveness for different individuals or groups is needed in order to identify who may benefit most from which intervention.

Using logic model methods in systematic review synthesis: describing complex pathways in referral management interventions.

BACKGROUND: There is increasing interest in innovative methods to carry out systematic reviews of complex interventions. Theory-based approaches, such as logic models, have been suggested as a means of providing additional insights beyond that obtained via conventional review methods. METHODS: This paper reports the use of an innovative method which combines systematic review processes with logic model techniques to synthesise a broad range of literature. The potential value of the model produced was explored with stakeholders. RESULTS: The review identified 295 papers that met the inclusion criteria. The papers consisted of 141 intervention studies and 154 non-intervention quantitative and qualitative articles. A logic model was systematically built from these studies. The model outlines interventions, short term outcomes, moderating and mediating factors and long term demand management outcomes and impacts. Interventions were grouped into typologies of practitioner education, process change, system change, and patient intervention. Short-term outcomes identified that may result from these interventions were changed physician or patient knowledge, beliefs or attitudes and also interventions related to changed doctor-patient interaction. A range of factors which may influence whether these outcomes lead to long term change were detailed. Demand management outcomes and intended impacts included content of referral, rate of referral, and doctor or patient satisfaction. CONCLUSIONS: The logic model details evidence and assumptions underpinning the complex pathway from interventions to demand management impact. The method offers a useful addition to systematic review methodologies. TRIAL REGISTRATION NUMBER: PROSPERO registration number: CRD42013004037.

Individual Placement and Support (IPS) beyond severe mental health: An overview review and meta-analysis of evidence around vocational outcomes.

Objective: To provide an overview review of international evidence of vocational outcomes in Individual Placement and Support (IPS) interventions for populations other than severe mental health. Methods: An overview of reviews published in English since 2000 reporting vocational outcomes (job entry, work sustainment, earnings, work hours, time to job entry) against counterfactuals of IPS interventions for population groups other than severe mental health. The overview review maximises data from individual studies and includes additional recent primary studies. DerSimonian-Laird random effects meta-analysis was performed. Results: Thirteen eligible studies were identified from five reviews and five more recent individual studies were also identified. IPS studies covered a range of groups with a concentration towards mental health. For the primary vocational outcome of job entry all IPS studies showed superior job entry rates compared to control groups with an overall weighted odds ratio of 1.78 [1.42,2.22]. Substantial heterogeneity was identified by study size and the overall weighted odds ratio of 1.32 [1.2,1.46] estimated from the large and medium sized studies seems a more plausible estimate of the likely effects of scaled-up IPS interventions in groups beyond severe mental health. Secondary vocational outcomes including job sustainment, total earnings, average weekly hours worked and time to job entry were typically superior in IPS services than control groups. Conclusions: IPS services are consistently more effective in supporting diverse population groups into sustained employment compared to business-as-usual employment services. The evidence is limited by unclear terminology, small sample sizes, incomplete intervention fidelity, intervention contamination and inconsistent measurement.

Understanding interventions and outcomes in supported employment and individual placement support: A qualitative evidence synthesis.

BACKGROUND: Economically developed economies continue to display large and long-standing disability employment gaps. Train-then-place activation models have traditionally dominated efforts to support non-working disabled people to gain employment but recently there has been increasing interest in place-then-train Supported Employment (SE) activation models. OBJECTIVE: Evidence regarding the effectiveness of SE approaches is growing. However, authors have called for greater understanding of the mechanisms underpinning these interventions. We therefore carried out a systematic review of qualitative research to understand the processes operating. METHODS: We carried out a systematic review of qualitative research around SE interventions carried out in developed countries since 2000 in any population excepting those with severe mental illness. We used thematic synthesis and logic modelling methods and assessed the quality of the body of literature. RESULTS: We identified and included 13 relevant source studies containing qualitative data. Key aspects of the programmes reported were the nature of the support, the employment advisor, and the type of employment. Influencing factors were client-related, employer and employment-related, programme-related, and system-related. Effects beyond the gaining of employment included a changed attitude to work, different outlook, increased skills and/or confidence. Suggested longer-term impacts were on health and wellbeing, financial security, independence, contribution to society and sense of belonging. CONCLUSIONS: This review adds to the growing evidence regarding the value of SE interventions for disabled people. It adds insights regarding the key elements of the programmes, and suggests outcomes beyond the measures typically considered within quantitative studies.

Reducing the time-lag between onset of chest pain and seeking professional medical help: a theory-based review.

BACKGROUND: Research suggests that there are a number of factors which can be associated with delay in a patient seeking professional help following chest pain, including demographic and social factors. These factors may have an adverse impact on the efficacy of interventions which to date have had limited success in improving patient action times. Theory-based methods of review are becoming increasingly recognised as important additions to conventional systematic review methods. They can be useful to gain additional insights into the characteristics of effective interventions by uncovering complex underlying mechanisms. METHODS: This paper describes the further analysis of research papers identified in a conventional systematic review of published evidence. The aim of this work was to investigate the theoretical frameworks underpinning studies exploring the issue of why people having a heart attack delay seeking professional medical help. The study used standard review methods to identify papers meeting the inclusion criterion, and carried out a synthesis of data relating to theoretical underpinnings. RESULTS: Thirty six papers from the 53 in the original systematic review referred to a particular theoretical perspective, or contained data which related to theoretical assumptions. The most frequently mentioned theory was the self-regulatory model of illness behaviour. Papers reported the potential significance of aspects of this model including different coping mechanisms, strategies of denial and varying models of treatment seeking. Studies also drew attention to the potential role of belief systems, applied elements of attachment theory, and referred to models of maintaining integrity, ways of knowing, and the influence of gender. CONCLUSIONS: The review highlights the need to examine an individual's subjective experience of and response to health threats, and confirms the gap between knowledge and changed behaviour. Interventions face key challenges if they are to influence patient perceptions regarding seriousness of symptoms; varying processes of coping; and obstacles created by patient perceptions of their role and responsibilities. A theoretical approach to review of these papers provides additional insight into the assumptions underpinning interventions, and illuminates factors which may impact on their efficacy. The method thus offers a useful supplement to conventional systematic review methods.

The use of non-invasive ventilation at end of life in patients with motor neurone disease: a qualitative exploration of family carer and health professional experiences.

BACKGROUND: Non-invasive ventilation improves quality and quantity of life in patients with motor neurone disease who have respiratory failure. Use of non-invasive ventilation may, however, result in complex clinical issues for end-of-life care, with concerns as to whether and how it should be withdrawn. AIM: This study aimed to describe carer and health professional experiences of end-of-life care of motor neurone disease patients using non-invasive ventilation. DESIGN/PARTICIPANTS: This article reports data from qualitative interviews with family carers and professionals following the death of patients with motor neurone disease who were using non-invasive ventilation in the final phase of the disease. RESULTS: Ten of the 20 patients initiated on non-invasive ventilation were using it in the end-of-life phase of their disease, with 5 using it for 24 h/day. Interviews were carried out with nine family carers and 15 professionals. Nine recurring themes were identified in the data. Both carers and health-care professionals perceived that the terminal phase of motor neurone disease was unexpectedly rapid and that this often led to unplanned interactions with the emergency services. Carers of patients who used non-invasive ventilation perceived non-invasive ventilation as aiding patient comfort and anxiety at the end of life. CONCLUSIONS: The use of non-invasive ventilation was described as beneficial and was not perceived by carers or most professionals to have adversely impacted patient's end-of-life experience. This study highlights variation in patient wishes regarding usage towards the end of life, uncertainty regarding appropriate management among professionals and the importance of disseminating end-of-life wishes.