Background When care homes close, it can be detrimental to older people’s well-being. However, there is little formal evidence to guide services when undertaking such important work. Objectives This study explores what happens when homes close, how best to minimise negative outcomes for older people and families, and key lessons for councils as they manage future closures. Methods Background literature review, national survey of Director(s) of Adult Social Services and analysis of national Care Quality Commission data. Interviews with older people, families, care staff, social workers and broader managers/partners in four case study sites, together with outcomes data (EQ-5D, ICEpop CAPability measure for Older people and outcomes from the literature on what older people value about care services) at initial assessment, 28 days’ review and 1 year. Survey of care staff (Professional Quality of Life survey) before and after closures, supplemented with individual interviews; interviews with commissioners and service providers. Preliminary model-based economic evaluation comparing the costs and consequences of care home closures. Distillation of key messages into a national policy guide, an accessible guide for older people/families and a guide/free training video for care staff. Findings People assume that a care home is a home for life – but this is sadly not always the case. Care homes can close for all kinds of reasons (e.g. to do with funding, buildings, care quality, etc., but also due to broader factors beyond the control of the care sector). There can be significant differences between emergency closures (which can be especially traumatic) and more planned closures (when at least in principle there is more time to work at the pace of individual residents). Local policies vary significantly, and there may be scope for a more evidence-informed, consistent approach. Closures can be extremely difficult for everyone involved – and should perhaps only ever be a last resort. Closures are particularly traumatic for residents, who are losing their home and valued relationships. For some people, this may be similar to a bereavement. The needs of care staff – in terms of meaningful information, emotional and financial well-being and employment support – are often overlooked. This leaves people unsupported and might also reduce their ability to support others. Councils seeking to shape local care markets often lack the levers to be able to do this effectively. Care home closures can create financial pressures on the public sector, costing around £1500 per resident, while families and staff may face varying expenses, such as top-up fees and travel costs. Unplanned and emergency closures are slightly more expensive, and result in poorer outcomes for residents. We have limited long-term data, but it may sometimes be possible to manage closures in a way that minimises negative outcomes for some (especially if existing services were less than optimal and where closures are well planned). Limitations Collecting data from older people, families and staff during care home closures, and in a challenging policy context, is complex, and the amount of data it is possible to collect in such circumstances is inevitably limited in a number of ways. In reflecting on this, we nonetheless draw attention to: The novel nature of the research, filling key gaps in knowledge around such a significant topic. The diverse and multifaceted perspectives which only a programme of research could hope to include. The importance of our policy and practice materials, given the significance of the issues at stake and the lack of previous evidence on which to draw. Conclusions Care home closures can happen for many different reasons, and are always a logical possibility in a ‘care market’, which seeks to use choice and competition to keep costs down and promote quality. This study has identified a series of practical lessons and experiences shared by participants which might help others in future – made available to different audiences via a series of policy, practice and training materials. However, none of this should, in any way, minimise the distress experienced by residents, which can be very significant and may well be long lasting. Moving beyond the specific focus of this research, insights from interviews with local commissioners and providers may have broader implications for the extent to which local authorities have sufficient powers and practical tools to be able to deliver on their ‘market shaping’ responsibilities under the Care Act. Future research on care home closures could usefully focus on: The needs/experiences of people who may have additional or specific needs that might otherwise be overlooked, such as people living with dementia and people from minority ethnic communities or different faith groups. The knock-on effect that care home closures may have on partner agencies. More effective ways of managing emergency closures, and how best to support people after the closure with the trauma they may have experienced. Larger sample sizes might also generate additional insights around individual outcomes and around the implications of particular resident/staff characteristics or types of closure – but this may need to be balanced against the difficulty of conducting such research and the cost to funders of even larger studies. Study registration This study is registered as IRAS project ID: 297258. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Programme Grants for Applied Research Programme (NIHR award ref: NIHR201585) and is published in full in Programme Grants for Applied Research; Vol. 14, No. 2. See the NIHR Funding and Awards website for further award information. Plain language summary We all want to be cared for with dignity when we are older, and we want the same for our families. Being looked after in a care home is expensive, and we have high expectations of the care that is given. But sometimes care homes close. This might be for a number of reasons, including financial problems, the state of the building or poor-quality care. This can affect the well-being of people in care homes, their families and the people who work there. Despite this, there is very little research to guide this important process. If care homes have to close, we want this to be well managed, so that older people are supported, families are reassured and care staff are helped to find new work and stay in care roles. To help with this, we: Asked Director(s) of Adult Social Services to tell us about what is happening across England and how they support older people at such potentially stressful times. Looked at some of the reasons why care homes might close from national data collected by an organisation called the Care Quality Commission. Worked in four different areas in England where homes are closing to ask older people, families, care staff and social workers about their experiences and how things could be improved. Looked at what impact closure has on older people’s health and well-being. Explored what happens to low-paid care staff after closures and the impact this has on them and the care they can give to others. Explored the cost implications for residents, family members, staff and wider society. We found that: People think that a care home is a home for life. Sadly, this is not always the case. Care homes can close for lots of different reasons. Planned closures can make it easier to support people well. Emergency closures, in particular, can be really upsetting. Local policies can be very different – perhaps there could be a more consistent national approach. Closures can be extremely difficult for everyone. They should only be a last resort. Closures are particularly traumatic for residents. For some people, this might be like a bereavement. The needs of care staff are often overlooked. It is difficult for councils to influence which homes open and close in their area. This might have broader implications for the role of councils beyond this particular topic. Closing a home costs councils money (about £1500 per resident). There can also be costs for residents and families. Even though moving to a new home can be very upsetting, some people settle and do well. We have written some guides to share what we have learnt with others. We have tried to focus on the things that people can do to make things better for residents – not on things they cannot change. There is a guide for older people and families being shared by a national charity called Age UK. Scientific summary Background We all want to be cared for with dignity when we are older, and we want the same for our families. Being looked after in a care home is expensive, and we have high expectations of the care that is given. Despite this, many care homes close every year, whether through an emergency (such as a fire/flood), councils making strategic choices to develop new service models, the cost of maintaining a dilapidated building, a private provider selling up/going bankrupt or a regulatory intervention following the discovery of poor care. In an era of austerity, care markets are increasingly fragile, and the very logic of a ‘market’ implies that the risk of failure has to be real for there to be sufficient incentives to deliver appropriate care at the right price. When care homes close, the received wisdom is that relocation can be detrimental to health and well-being. Despite this, there is little formal evidence to guide closure processes, with councils constantly ‘reinventing the wheel’. Objectives This study builds on a previous pilot in Birmingham in order to explore what happens to older people and care staff when care homes close, how best to manage closures in a way that minimises distress and negative outcomes for older people and families, and key lessons for councils as they seek to manage future closures. Our research questions are: What is the pattern of care home closures nationally? How are they undertaken in different councils, and what do councils consider to be best practice when supporting older people at such potentially stressful times? How do older people experience closures, what impact does closure have on health and quality of life, and how can any negative impacts be reduced? What impact do closures have on care staff and local care markets, and how can negative impacts be reduced? What are the costs and consequences of closures and the key data required to make this estimation? Can we develop a modelling framework to drive appropriate data collection for future home closure prediction to mitigate adverse outcomes? How can future closures be planned and conducted in a more evidence-based manner, so that outcomes for older people are improved and negative impacts reduced? Methods Work package 1 aimed to establish the pattern of care home closures nationally, how they are undertaken in different councils and what might constitute best practice when supporting older people. We carried out a cross-sectional survey targeted at social care leaders and an analysis of care home closure policy documents. All Director(s) of Adult Social Services in 152 councils in England were invited to participate. The survey explored leaders’ experiences of closures, policies, processes, perceived outcomes, challenges and any local evaluations. Participants were invited to share local care home closure policies for analysis. Descriptive statistics were analysed for quantitative survey data. Qualitative survey data and policy documents were analysed thematically. We also analysed routinely collected data from the Care Quality Commission (CQC) to understand the factors that influence care home closures. This combined individual care home characteristics from the CQC with information on council areas, taken from various sources, and data from the Social Care Collection. The CQC data provide us with information on 25,459 care homes between 2010 and 2021. These data are at the care home level and provide information on the type of care home (nursing/residential), the focus of the care home (older people, dementia, disability), size (measured by the number of beds), performance rating and indicators of whether the care home is located in an urban or rural area. The CQC data also provide us with the care home’s geographical location. This information allowed us to link data on other local characteristics (such as the proportion of the population who are over 65, deprivation, residential land prices and care home market competition). We also included variables collected as part of the Social Care Collection. This includes the proportion of self-funders, average daily rates of delayed transfers of care from hospital, total expenditure, satisfaction scores taken from the adult social care survey, proportion of individuals over 65 receiving long-term support and funds attached to carers support. The research used a multilevel logit regression model to study whether care homes close or stay open (a yes or no outcome). By using this approach, the study can account for differences between care homes within the same council, leading to more accurate results about how care home features, local factors, and social care spending affect the chances of a care home closing. Work package 2 explored the experiences of older people, families, care staff, social workers and broader stakeholders/local partners. We worked in four case study councils where homes were closing, including a mix of different locations across England, a mix of urban/rural settings and a mix in terms of socioeconomic/demographic factors. In each site, we undertook semi-structured qualitative interviews with 10–15 stakeholders/broader partners who had key roles in/perspectives on care home closures to explore the rationale for closure, key drivers, anticipated outcomes and impact on other services. We also undertook semi-structured interviews with 96 participants (older people, families, care staff and social workers) to explore the impact of closures, information/support provided, views on the process and areas for improvement. Interviews with older people took place in person with researchers based in the closing care homes (where COVID restrictions permitted). Where people were unable to consent to take part, a consultee was identified under the Mental Capacity Act. Interviews with families, care staff and assessors took place either in person or online, guided by their preference. We collected outcomes data for older people at initial review (before the closure), an early review (often 28 days after relocating) and at a longer-term review (1 year), before, during and after relocation. Twenty-two participants completed up to three paper-based questionnaires: EQ-5D, three-level version, ICEpop CAPability measure for Older people (ICECAP-O) and a 15-question, Likert scale questionnaire, based on a national review of the literature on what older people value about care services. Interviews were transcribed and analysed using the framework approach to identify key themes. Questionnaires were coded and analysed using Stata® (StataCorp LP, College Station, TX, USA). Work package 3 considered the impact of care home closures on care staff. Where access permitted, all care staff in closing homes in our four case study sites were invited to take part in interviews and to complete the Professional Quality of Life survey during and 6 months after closure. The interviews explored how care staff experienced the closure of the care home where they worked, how they prepared for closure, the impact upon themselves and current/future employment, and their insights into the closure process. All employed staff at a care home were given the opportunity to take part, including kitchen staff, cleaners and handypeople, as well as people providing direct care and those working in co-ordinating or care management capacities. In each of our four case study sites, we carried out semi-structured interviews with commissioners and providers (seeking up to eight of each per site). Participants included those in senior roles involved in decision-making or closely connected to care home functioning, as well as those who were indirectly or directly impacted by a care home closing. Interviews explored the relationship between commissioners and providers, the nature and impact of local authority strategy, the responsibilities of care homes and the local care market (including approaches to trying to shape the local market, to ensure stability and to contingency planning). Work package 4 focused on analysing the economic impacts of care home closures on residents, their families, care home staff and councils. Pathway costing employed both quantitative and qualitative methods, organised into three stages. Stage 1 involved analysing stakeholder interviews (from WP2) to identify economic themes related to care home closures. Stage 2 utilised these insights to develop closure pathways for stakeholders, including residents, families and care staff. Stage 3 conducted a full cost analysis to estimate closure costs, including using sensitivity analysis for different stakeholders. This stage involved identifying and quantifying resources needed at each pathway stage. Economic modelling focused on developing a decision tree model to analyse care home closures under three scenarios: planned, unplanned and emergency. This model was informed by interview data from WP2, specifically coded for WP4. The pathways developed in the previous pathway costing served as a foundation and were adapted to reflect the complexities of unplanned and emergency closures. Cost and resource use data were derived from the previous cost analysis, supplemented by literature and expert opinion, especially for unplanned and emergency scenarios. Probabilities within the model were informed by observations from case study sites, literature reviews, qualitative interviews and expert opinions. The analysis was conducted from a public sector perspective using a 12-month decision tree model. This model reports the cost per capability improvement by comparing unplanned and emergency scenarios to a reference case of planned closures. Outcomes were measured using ICECAP-O and EQ-5D data collected in WP2. In work package 5, we summarised findings in a national policy guide sent to all social care leaders in England, a free training video, a guide for older people/families and a guide for care staff. Results Key findings were that: People assume that a care home is a home for life – but this is sadly not always the case. Care homes can close for all kinds of reasons (e.g. to do with funding, buildings, care quality, etc., but also due to broader factors beyond the control of the care sector). There can be significant differences between emergency closures (which can be especially traumatic) and more planned closures (when at least in principle there is more time to work at the pace of individual residents). Local policies vary significantly, with scope for a more evidence-informed, consistent approach. Closures can be extremely difficult for everyone involved – and should perhaps only ever be a last resort. Closures are particularly traumatic for residents, who are losing their home and valued relationships. For some people, this may be similar to a bereavement. The needs of care staff – in terms of meaningful information, emotional and financial well-being and employment support – are often overlooked. This leaves people unsupported and might also reduce their ability to support others. Councils seeking to shape local care markets often lack the levers to be able to do this effectively. Care home closures can create financial pressures on the public sector, costing around £1500 per resident, while families and staff may face varying expenses, such as top-up fees and travel costs. Unplanned and emergency closures are slightly more expensive, and result in poorer outcomes for residents. We have limited long-term data, but it may sometimes be possible to manage closures in a way that minimises negative outcomes for some (especially if existing services were less than optimal and where closures are well planned). Conclusions Overall, we conclude that: Many people assume that moving into a care home means a home for life – but this is sadly not always the case. Homes can close for all kinds of reasons. This can be due to issues around funding, business decisions and/or the quality of care delivered – but can also be influenced by broader factors (such as changes in land values influencing people’s decisions about whether or not to exit the market). There can be very significant differences between emergency closures (which can be especially difficult and traumatic) and more planned closures (when at least in principle there is more time to plan, communicate and work at the pace of individual residents). There has previously been limited evidence to guide decision-makers and practitioners seeking to support and relocate older people. Local policies and protocols vary significantly, and there may be scope for a more evidence-informed, consistent approach (e.g. via a national or regional template). Closures can be extremely difficult and traumatic for everyone involved, from social care leaders and staff, to service providers and care staff, to older people and families – and should perhaps only ever be seen as a last resort. Closures are particularly traumatic for older people, who may be understandably angry, distressed and disorientated. People are losing their home and valued relationships with residents and staff, and the process may well be similar to that of a bereavement. The needs of care staff – in terms of meaningful information, practical details, emotional well-being and employment support – can often be overlooked. This should be a key focus in future, both to better support staff, and because care staff are so significant in terms of supporting older people. Local authorities have a duty to shape their local care markets, but often lack the levers, powers and tools to be able to do this effectively. Too often, they feel as if the ‘wrong’ homes are opening and closing in their areas. Care home closures can create financial pressures on the public sector, costing around £1500 per resident, while families and staff may face varying expenses, such as top-up fees and travel costs. Our findings indicate that unplanned and emergency closures are slightly more expensive and result in poorer outcomes for residents. Well-planned and supportive closures can potentially improve the health-related quality of life of residents over the longer-term period of a year (especially if people are unhappy with care in the original home) but are associated with a brief initial negative impact. Findings highlight the importance of careful preparation, planning and support to minimise disruption and improve overall outcomes. Recommendations for policy, practice and research Above all, there are a series of practical lessons and experiences shared by participants which might help others in future – made available to different audiences via a series of policy, practice and training materials. However, none of this should in any way minimise the distress experienced by residents, which can be very significant and may well be long lasting. We will also seek to work with regulators to learn lessons from one of our emergency closures, which happened at very short notice (hours) and was particularly traumatic for everyone involved. Moving beyond the specific focus of this research, insights from interviews with local commissioners and providers may have broader implications for the extent to which local authorities have sufficient powers and practical tools to be able to deliver on their ‘market shaping’ responsibilities under the Care Act. Future care home closures research could usefully focus on: The needs/experiences of people who may have additional or specific needs during closures that might otherwise be overlooked, such as people living with dementia and people from minority ethnic communities or different faith groups. The knock-on effect that care home closures may have on partner agencies. More effective ways of managing emergency closures and how best to support people after the closure with the trauma they may have experienced. Larger sample sizes might generate additional insights around individual outcomes and the implications of particular resident/staff characteristics or types of closure, but this may need to be balanced against the difficulty of conducting such research/the cost of even larger studies. Study registration This study is registered as IRAS project ID: 297258. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Programme Grants for Applied Research Programme (NIHR award ref: NIHR201585) and is published in full in Programme Grants for Applied Research; Vol. 14, No. 2. See the NIHR Funding and Awards website for further award information.
BACKGROUND:Collaborative care for severe mental illness (SMI) is a community-based intervention that promotes interdisciplinary working across primary and secondary care. Collaborative care interventions aim to improve the physical and/or mental health care of individuals with SMI. This is an update of a 2013 Cochrane review, based on new searches of the literature, which includes an additional seven studies. OBJECTIVES:To assess the effectiveness of collaborative care approaches in comparison with standard care (or other non-collaborative care interventions) for people with diagnoses of SMI who are living in the community. SEARCH METHODS:We searched the Cochrane Schizophrenia Study-Based Register of Trials (10 February 2021). We searched the Cochrane Common Mental Disorders (CCMD) controlled trials register (all available years to 6 June 2016). Subsequent searches on Ovid MEDLINE, Embase and PsycINFO together with the Cochrane Central Register of Controlled Trials (with an overlap) were run on 17 December 2021. SELECTION CRITERIA:Randomised controlled trials (RCTs) where interventions described as 'collaborative care' were compared with 'standard care' for adults (18+ years) living in the community with a diagnosis of SMI. SMI was defined as schizophrenia, other types of schizophrenia-like psychosis or bipolar affective disorder. The primary outcomes of interest were: quality of life, mental state and psychiatric admissions at 12 months follow-up. DATA COLLECTION AND ANALYSIS:Pairs of authors independently extracted data. We assessed the quality and certainty of the evidence using RoB 2 (for the primary outcomes) and GRADE. We compared treatment effects between collaborative care and standard care. We divided outcomes into short-term (up to six months), medium-term (seven to 12 months) and long-term (over 12 months). For dichotomous data we calculated the risk ratio (RR) and for continuous data we calculated the standardised mean difference (SMD), with 95% confidence intervals (CIs). We used random-effects meta-analyses due to substantial levels of heterogeneity across trials. We created a summary of findings table using GRADEpro. MAIN RESULTS:Eight RCTs (1165 participants) are included in this review. Two met the criteria for type A collaborative care (intervention comprised of the four core components). The remaining six met the criteria for type B (described as collaborative care by the trialists, but not comprised of the four core components). The composition and purpose of the interventions varied across studies. For most outcomes there was low- or very low-certainty evidence. We found three studies that assessed the quality of life of participants at 12 months. Quality of life was measured using the SF-12 and the WHOQOL-BREF and the mean endpoint mental health component scores were reported at 12 months. Very low-certainty evidence did not show a difference in quality of life (mental health domain) between collaborative care and standard care in the medium term (at 12 months) (SMD 0.03, 95% CI -0.26 to 0.32; 3 RCTs, 227 participants). Very low-certainty evidence did not show a difference in quality of life (physical health domain) between collaborative care and standard care in the medium term (at 12 months) (SMD 0.08, 95% CI -0.18 to 0.33; 3 RCTs, 237 participants). Furthermore, in the medium term (at 12 months) low-certainty evidence did not show a difference between collaborative care and standard care in mental state (binary) (RR 0.99, 95% CI 0.77 to 1.28; 1 RCT, 253 participants) or in the risk of being admitted to a psychiatric hospital at 12 months (RR 5.15, 95% CI 0.67 to 39.57; 1 RCT, 253 participants). One study indicated an improvement in disability (proxy for social functioning) at 12 months in the collaborative care arm compared to usual care (RR 1.38, 95% CI 0.97 to 1.95; 1 RCT, 253 participants); we deemed this low-certainty evidence. Personal recovery and satisfaction/experience of care outcomes were not reported in any of the included studies. The data from one study indicated that the collaborative care treatment was more expensive than standard care (mean difference (MD) international dollars (Int$) 493.00, 95% CI 345.41 to 640.59) in the short term. Another study found the collaborative care intervention to be slightly less expensive at three years. AUTHORS' CONCLUSIONS:This review does not provide evidence to indicate that collaborative care is more effective than standard care in the medium term (at 12 months) in relation to our primary outcomes (quality of life, mental state and psychiatric admissions). The evidence would be improved by better reporting, higher-quality RCTs and the assessment of underlying mechanisms of collaborative care. We advise caution in utilising the information in this review to assess the effectiveness of collaborative care.
Background and aims Individuals living with severe mental illness such as schizophrenia and bipolar can have significant emotional, cognitive, physical and social challenges. Most people with severe mental illness in the United Kingdom do not receive specialist mental health care. Collaborative care is a system of support that combines clinical and organisational components to provide integrated and person-centred care. It has not been tested for severe mental illness in the United Kingdom. We aimed to develop and evaluate a primary care-based collaborative care model (PARTNERS) designed to improve quality of life for people with diagnoses of schizophrenia, bipolar or other psychoses when compared with usual care. Methods Phase 1 included studies to (1) understand context: an observational retrospective study of primary and secondary care medical records and an update of the Cochrane review ‘Collaborative care approaches for people with severe mental illness’; (2) develop and formatively evaluate the PARTNERS intervention: a review of literature on collaborative care and recovery, interviews with key leaders in collaborative care and recovery, focus groups with service users and a formative evaluation of a prototype intervention model; and (3) develop trial science work in this area: a core outcome set for bipolar and recruitment methods. In phase 2 we conducted a cluster randomised controlled trial measuring quality of life using the Manchester Short Assessment of Quality of Life and secondary outcomes including time use, recovery and mental well-being; a cost-effectiveness study; and a mixed-methods process evaluation. Public involvement underpinned all of the workstream activity through the study Lived Experience Advisory Panel and the employment of service user researchers in the project team. Results phase 1 The study of records showed that care for individuals under secondary care is variable and substantial and that people are seen every 2 weeks on average. The updated Cochrane review showed that collaborative care interventions were highly variable, and no reliable conclusions can be drawn about effectiveness. The PARTNERS model incorporated change at organisational, practitioner and individual levels. Coaching was selected as the main form of support for individuals’ personal goals. In the formative evaluation, we showed that more intensive supervision and ‘top-up’ training were needed to achieve the desired shifts in practice. A core outcome set was developed for bipolar, and measures were selected for the trial. We developed a stepped approach to recruitment including initial approach and appointment. Results phase 2 The trial was conducted in four areas. In total, 198 participants were recruited from 39 practices randomised. Participants received either the PARTNERS intervention or usual care. The follow-up rate was 86% at 9–12 months. The mean change in overall Manchester Short Assessment Quality of Life score did not differ between the groups [0.25 (standard deviation 0.73) for intervention vs. 0.21 (standard deviation 0.86) for control]. We also found no difference for any secondary measures. Safety outcomes (e.g. crises) did not differ between those receiving and those not receiving the intervention. Although the costs of intervention and usual care were similar, there is insufficient evidence to draw conclusions about the overall cost-effectiveness of PARTNERS. The mixed-methods process evaluation demonstrated that a significant proportion of individuals did not receive the full intervention. This was partly due to care partner absence and participant choice. The in-depth realist informed case studies showed that participants generally appreciated the support, with some describing having a ‘professional friend’ as very important. For some people there was evidence that delivery of the intervention had led to specific personal changes. Strengths and limitations The phase 1 records study provided insights into usual care that had not been previously documented. The realist informed complex intervention development was both theoretical and pragmatic. The trial continued through the COVID-19 pandemic with high levels of follow-up. The process evaluation had the depth to explore individual changes in participants’ response to the intervention. Weaknesses in the trial methodology included suboptimal implementation, outcome measures that may not have been sensitive to changes patients most appreciated and difficulties collecting some outcomes. Conclusions While PARTNERS was not shown to be superior to usual care, the change to PARTNERS care was not shown to be unsafe. Full intervention implementation was challenging, but this is to be expected in studies of care that include those with psychosis. Some individuals responded well to the intervention when psychological support in the form of individualised goal setting was flexibly deployed, with evidence that having access to a ‘professional friend’ was experienced as particularly helpful for some individuals. Future work Key components of the PARTNERS model could be developed further and tested, along with improved supervision in the context of ongoing community mental health care change. Trial registration This trial is registered as ISRCTN95702682. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Programme Grants for Applied Research programme (NIHR award ref: NIHR200625) and is published in full in Programme Grants for Applied Research ; Vol. 12, No. 6. See the NIHR Funding and Awards website for further award information.
Background This paper explores the extent to which the implementation and evaluation of a collaborative care model of face-to-face service delivery for people with severe mental illness was viable during the first UK lockdown associated with COVID-19. The PARTNERS2 cluster randomised controlled trial and process evaluation were co-designed with service users and carers. The aim of this paper is to explore whether digital adaptation of the PARTNERS model for people with severe mental illness during the COVID-19 lockdown was equitable, in terms of fostering collaboration and trust in a vulnerable population. Results We collected qualitative data from multiple sources during lockdown and subsequently constructed case-studies of participating secondary care workers. We adopted Bauman’s notions of liquid modernity to inform our analysis, and identified that digital adaptation during lockdown was only successful where organisational policies, care partner skills and service users’ existing resources were optimal. Conclusion PARTNERS2 can be delivered digitally by a care partner to support people with severe mental illness to identify and work towards their goals when existing resources are optimal. However, at a time of increased need, we identified that people who are very unwell and living with limited access to resources and opportunities, remained disenfranchised at great cost. Trial registration ISRCTN 95702682, registered 26.10.2017
Background Individuals living with severe mental illness can have significant emotional, physical and social challenges. Collaborative care combines clinical and organisational components. Aims We tested whether a primary care-based collaborative care model (PARTNERS) would improve quality of life for people with diagnoses of schizophrenia, bipolar disorder or other psychoses, compared with usual care. Method We conducted a general practice-based, cluster randomised controlled superiority trial. Practices were recruited from four English regions and allocated (1:1) to intervention or control. Individuals receiving limited input in secondary care or who were under primary care only were eligible. The 12-month PARTNERS intervention incorporated person-centred coaching support and liaison work. The primary outcome was quality of life as measured by the Manchester Short Assessment of Quality of Life (MANSA). Results We allocated 39 general practices, with 198 participants, to the PARTNERS intervention (20 practices, 116 participants) or control (19 practices, 82 participants). Primary outcome data were available for 99 (85.3%) intervention and 71 (86.6%) control participants. Mean change in overall MANSA score did not differ between the groups (intervention: 0.25, s.d. 0.73; control: 0.21, s.d. 0.86; estimated fully adjusted between-group difference 0.03, 95% CI −0.25 to 0.31; P = 0.819). Acute mental health episodes (safety outcome) included three crises in the intervention group and four in the control group. Conclusions There was no evidence of a difference in quality of life, as measured with the MANSA, between those receiving the PARTNERS intervention and usual care. Shifting care to primary care was not associated with increased adverse outcomes.
Dyfyniad o'r fersiwn a gyhoeddwyd / Citation for published version (APA): Reilly, S., Marchevsky, N., Green, M., Davies, L., Plappert, H., Allard, J., Rawcliffe, T., Gibson, J., Clark, M., Pinfold, V., Gask, L., Huxley, P., Byng, R., & Birchwood, M. (2021). Status of primary and secondary mental healthcare of people with severe mental illness: an epidemiological study from the UK PARTNERS2 programme. British Journal of Psychiatry, 7(2), [e53]. https://doi.org/10.1192/bjo.2021.10
BACKGROUND:Current NHS policy encourages an integrated approach to provision of mental and physical care for individuals with long term mental health problems. The 'PARTNERS2' complex intervention is designed to support individuals with psychosis in a primary care setting.AIM:The trial will evaluate the clinical and cost-effectiveness of the PARTNERS2 intervention.DESIGN & SETTING:This is a cluster randomised controlled superiority trial comparing collaborative care (PARTNERS2) with usual care, with an internal pilot to assess feasibility. The setting will be primary care within four trial recruitment areas: Birmingham & Solihull, Cornwall, Plymouth, and Somerset. GP practices are randomised 1:1 to either (a) the PARTNERS2 intervention plus modified standard care ('intervention'); or (b) standard care only ('control').METHOD:PARTNERS2 is a flexible, general practice-based, person-centred, coaching-based intervention aimed at addressing mental health, physical health, and social care needs. Two hundred eligible individuals from 39 GP practices are taking part. They were recruited through identification from secondary and primary care databases. The primary hypothesis is quality of life (QOL). Secondary outcomes include: mental wellbeing, time use, recovery, and process of physical care. A process evaluation will assess fidelity of intervention delivery, test hypothesised mechanisms of action, and look for unintended consequences. An economic evaluation will estimate its cost-effectiveness. Intervention delivery and follow-up have been modified during the COVID-19 pandemic.CONCLUSION:The overarching aim is to establish the clinical and cost-effectiveness of the model for adults with a diagnosis of schizophrenia, bipolar, or other types of psychoses.
Background There is global interest in the reconfiguration of community mental health services, including primary care, to improve clinical and cost effectiveness. Aims Thisstudyseekstodescribepatternsofserviceuse,continuityof care, health risks, physical healthcare monitoring and the bal- ance between primary and secondary mental healthcare for people with severe mental illness in receipt of secondary mental healthcare in the UK. Method We conducted an epidemiological medical records review in three UK sites. We identified 297 cases randomly selected from the three participating mental health services. Data were manually extracted from electronic patient medical records from both secondary and primary care, for a 2-year period (2012 – 2014). Continuous data were summarised by mean and s.d. or median and interquartile range (IQR). Categorical data were summarised as percentages. The majority of care was from secondary care practitioners: of the 18 210 direct contacts recorded, 76% were from secondary care (median, 36.5; IQR, 14 – 68) and 24% were from primary care (median, 10; IQR, 5 – 20). There was evidence of poor longitudinal continuity: in primary care, 31% of people had poor longitudinal continuity (Modified Modified Continuity Index ≤ 0.5), and 43% had a single named care coordinator in secondary care services over the 2 years. The study indicates scope for improvement in supporting mental health service deliveryinprimary care. Greaterknowledge ofhow care is organised presents an opportunity to ensure some rebal-ancing of the care that all people with severe mental illness receive, when they need it. A future publication will examine differencesbetweenthethree sites that participatedinthis study.
Background There is global interest in the reconfiguration of community mental health services, including primary care, to improve clinical and cost effectiveness. Aims This study seeks to describe patterns of service use, continuity of care, health risks, physical healthcare monitoring and the balance between primary and secondary mental healthcare for people with severe mental illness in receipt of secondary mental healthcare in the UK. Method We conducted an epidemiological medical records review in three UK sites. We identified 297 cases randomly selected from the three participating mental health services. Data were manually extracted from electronic patient medical records from both secondary and primary care, for a 2-year period (2012–2014). Continuous data were summarised by mean and s.d. or median and interquartile range (IQR). Categorical data were summarised as percentages. Results The majority of care was from secondary care practitioners: of the 18 210 direct contacts recorded, 76% were from secondary care (median, 36.5; IQR, 14–68) and 24% were from primary care (median, 10; IQR, 5–20). There was evidence of poor longitudinal continuity: in primary care, 31% of people had poor longitudinal continuity (Modified Modified Continuity Index ≤0.5), and 43% had a single named care coordinator in secondary care services over the 2 years. Conclusions The study indicates scope for improvement in supporting mental health service delivery in primary care. Greater knowledge of how care is organised presents an opportunity to ensure some rebalancing of the care that all people with severe mental illness receive, when they need it. A future publication will examine differences between the three sites that participated in this study.
In this article, we present an exemplar of the initial theory-building phase of theory-driven evaluation for the PARTNERS2 project, a collaborative care intervention for people with experience of psychosis in England. Initial theory-building involved analysis of the literature, interviews with key leaders and focus groups with service users. The initial programme theory was developed from these sources in an iterative process between researchers and stakeholders (service users, practitioners, commissioners) involving four activities: articulation of 442 explanatory statements systematically developed using realist methods; debate and consensus; communication; and interrogation. We refute two criticisms of theory-driven evaluation of complex interventions. We demonstrate how the process of initial theory-building made a meaningful contribution to our complex intervention in five ways. Although time-consuming, it allowed us to develop an internally coherent and well-documented intervention. This study and the lessons learnt provide a detailed resource for other researchers wishing to build theory for theory-driven evaluation.
Background A core outcome set (COS) is a standardised collection of outcomes to be collected and reported in all trials within a research area. A COS can reduce reporting bias and facilitate evidence synthesis. This is currently unavailable for use in community-based bipolar trials. This research aimed to develop such a COS, with input from a full range of stakeholders. Methods A co-production approach was used throughout. A longlist of outcomes was derived from focus groups with people with a bipolar diagnosis and carers, interviews with healthcare professionals and a rapid review of outcomes listed in bipolar trials on the Cochrane database. An expert panel with personal and/or professional experience of bipolar participated in a modified Delphi process and the COS was finalised at a consensus meeting. Results Fifty participants rated the importance of each outcome. Sixty-six outcomes were included in Round 1 of the questionnaire; 13 outcomes were added by Round 1 participants and were rated in Round 2. Seventy-six percent of participants (n = 38) returned to Round 2 and 60 outcomes, including 4 outcomes added by participants in Round 1, received a rating of 7-9 by >70% and 1-3 by <25% of the sample. Fourteen participants finalised a COS containing 11 outcomes at the consensus meeting: personal recovery; connectedness; clinical recovery of bipolar symptoms; mental health and wellbeing; physical health; self-monitoring and management; medication effects; quality of life; service outcomes; experience of care; and use of coercion. Conclusions This COS is recommended for use in community-based bipolar trials to ensure stakeholder-relevant outcomes, facilitate data synthesis, and transparent reporting. The COS includes guidance notes for each outcome to allow the identification of suitable measurement instruments. Further validation is recommended for use with a wide range of communities and to achieve standardised measurement.
BackgroundMany people diagnosed with schizophrenia, bipolar or other psychoses in England receive the majority of their healthcare from primary care. Primary care practitioners may not be well equipped to meet their needs and there is often poor communication with secondary care. Collaborative care is a promising alternative model but has not been trialled specifically with this service user group in England. Collaborative care for other mental health conditions has not been widely implemented despite evidence of its effectiveness. We carried out a formative evaluation of the PARTNERS model of collaborative care, with the aim of establishing barriers and facilitators to delivery, identifying implementation support requirements and testing the initial programme theory.MethodsThe PARTNERS intervention was delivered on a small scale in three sites. Qualitative data was collected from primary and secondary care practitioners, service users andfamily carers, using semi-structured interviews, session recordings and tape-assisted recall. Deductive and inductive thematic analysis was carried out; themes were compared to the programme theory and used to inform an implementation support strategy.ResultsKey components of the intervention that were not consistently delivered as intended were: interaction with primary care teams, the use of coaching, and supervision. Barriers and facilitators identified were related to service commitment, care partner skills, supervisor understanding and service user motivation. An implementation support strategy was developed, with researcher facilitation of communication and supervision and additional training for practitioners. Some components of the intervention were not experienced as intended; this appeared to reflect difficulties with operationalising the intervention. Analysis of data relating to the intended outcomes of the intervention indicated that the mechanisms proposed in the programme theory had operated as expected.ConclusionsAdditional implementation support is likely to be required for the PARTNERS model to be delivered; the effectiveness of such support may be affected by practitioner and service user readiness to change. There is also a need to test the programme theory more fully. These issues will be addressed in the process evaluation of our full trial.Trial registrationISRCTN95702682, 26 October 2017.