Experiences of integrated care for dementia from family and carer perspectives: A framework analysis of massive open online course discussion board posts

Background Integrated Care for dementia is an increasingly popular approach to supporting people with dementia, bringing services together to form a single cohesive provision for service users. This approach is still in its infancy but has the potential to improve the management of dementia, social care and to enhance the patient experience. Aims To understand views and experiences of integrated health and social care for dementia from the perspective of carers, families, healthcare professionals and researchers. Methods Crowdsourcing views and experiences from 'Bridging the Dementia Divide', a massive open online course at the University of Derby, provide a rich source of qualitative data from carers, families and healthcare professionals. We analysed 847 massive open online course discussion board posts using a Framework Analysis approach. Results Participants described how Integrated Care for dementia should be person-centred and holistic, involving a multidisciplinary team of health and social care practitioners, as well as the patient, the family and the wider community. The establishment of Integrated Care for dementia was viewed positively.N/

Adapting the ASSIST model of informal peer-led intervention delivery to the Talk to FRANK drug prevention programme in UK secondary schools (ASSIST + FRANK): intervention development, refinement and a pilot cluster randomised controlled trial

Background: Illicit drug use increases the risk of poor physical and mental health. There are few effective drug prevention interventions. Objective: To assess the acceptability of implementing and trialling two school-based peer-led drug prevention interventions. Design: Stage 1 – adapt ASSIST, an effective peer-led smoking prevention intervention to deliver information from the UK national drug education website [see www.talktofrank.com (accessed 29 August 2017)]. Stage 2 – deliver the two interventions, ASSIST + FRANK (+FRANK) and FRANK friends, examine implementation and refine content. Stage 3 – four-arm pilot cluster randomised control trial (cRCT) of +FRANK, FRANK friends, ASSIST and usual practice, including a process evaluation and an economic assessment. Setting: Fourteen secondary schools (two in stage 2) in South Wales, UK. Participants: UK Year 8 students aged 12–13 years at baseline. Interventions: +FRANK is a UK informal peer-led smoking prevention intervention provided in Year 8 followed by a drug prevention adjunct provided in Year 9. FRANK friends is a standalone informal peer-led drug prevention intervention provided in Year 9. These interventions are designed to prevent illicit drug use through training influential students to disseminate information on the risks associated with drugs and minimising harms using content from www.talktofrank.com. Training is provided off site and follow-up visits are made in school. Outcomes: Stage 1 – +FRANK and FRANK friends intervention manuals and resources. Stage 2 – information on the acceptability and fidelity of delivery of the interventions for refining manuals and resources. Stage 3 – (a) acceptability of the interventions according to prespecified criteria; (b) qualitative data from students, staff, parents and intervention teams on implementation and receipt of the interventions; (c) comparison of the interventions; and (d) recruitment and retention rates, completeness of primary, secondary and intermediate outcome measures and estimation of costs. Results: +FRANK and FRANK friends were developed with stakeholders [young people, teachers (school management team and other roles), parents, ASSIST trainers, drug agency staff and a public health commissioner] over an 18-month period. In the stage 2 delivery of +FRANK, 12 out of the 14 peer supporters attended the in-person follow-ups but only one completed the electronic follow-ups. In the pilot cRCT, 12 schools were recruited, randomised and retained. The student response rate at the 18-month follow-up was 93% (1460/1567 students). Over 80% of peer supporters invited were trained and reported conversations on drug use and contact with trainers. +FRANK was perceived less positively than FRANK friends. The prevalence of lifetime illicit drug use was 4.1% at baseline and 11.6% at follow-up, with low numbers of missing data for all outcomes. The estimated cost per school was £1942 for +FRANK and £3041 for FRANK friends. All progression criteria were met. Conclusions: Both interventions were acceptable to students, teachers and parents, but FRANK friends was preferred to +FRANK. A limitation of the study was that qualitative data were collected on a self-selecting sample. Future work recommendations include progression to a Phase III effectiveness trial of FRANK friends. Trial registration: Current Controlled Trials ISRCTN14415936. Funding: This project was funded by the National Institute for Health Research (NIHR) Public Health Research programme and will be published in full in Public Health Research; Vol. 5, No. 7. See the NIHR Journals Library website for further project information. The work was undertaken with the support of the Centre for the Development and Evaluation of Complex Interventions for Public Health Improvement (DECIPHer). Joint funding (MR/KO232331/1) from the British Heart Foundation, Cancer Research UK, the Economic and Social Research Council, the Medical Research Council, the Welsh Government and the Wellcome Trust, under the auspices of the UK CRC, is gratefully acknowledged

Critical time Intervention for Severely mentally ill Prisoners (CrISP): a randomised controlled trial

Background The transition from prison to community is difficult for prisoners with mental illness. Critical time intervention (CTI) is designed to provide intensive support to meet health, social care and resettlement needs through close working between client and key worker pre, and up to 6 weeks post, release. Objectives To establish whether or not CTI is effective in (1) improving engagement of discharged male prisoners who have mental illness with community mental health teams (CMHTs) and (2) providing practical support with housing, finance and re-establishing social networks. Trial design A multicentre, parallel-group randomised controlled trial, with follow-up at 6 weeks and at 6 and 12 months. A subset of prisoners and case managers participated in a complementary qualitative study. Setting Eight English prisons. Participants One hundred and fifty adult male prisoners, convicted or remanded, cared for by mental health in-reach teams and diagnosed with severe mental illness, with a discharge date within 6 months of the point of recruitment. Intervention Participants were randomised to either the intervention or the control (treatment as usual). The intervention group was assigned a case manager who assessed mental and physical health before and following release, made appropriate links to health, housing and financial services and supported the re-establishment of family/peer contact. Outcome The primary outcome measure was engagement with a CMHT 6 weeks post discharge. Secondary outcomes included contact with mental health services at 6 and 12 months. A health economic evaluation was undertaken using service contact at the follow-up time points. We were unable to assess the intervention’s effect on reoffending and longer-term health-care use because of study delays. Results One hundred and fifty prisoners were recruited: 72 were randomised to the intervention and 78 were randomised to the control. Engagement with teams at 6 weeks was 53% for the intervention group compared with 27% for the control group [95% confidence interval (CI) 0.13% to 0.78%; p = 0.012]. At 6 months’ follow-up, intervention participants showed continued increase in engagement with teams compared with control participants (95% CI 0.12% to 0.89%; p = 0.029); there were no significant differences at 12 months. Increased engagement resulted in higher levels of service use and costs for the intervention than for the control. Qualitative data showed the intervention group reporting better continuity of care and improved access to services. Conclusion The intervention significantly improved contact with services at 6 weeks, although at a higher cost than the control. This is important as, in the days and weeks following release, recently released individuals are at a particularly high risk of suicide and drug overdose. Further research is required to establish how teams can better maintain contact with clients when the intervention ends. Future work Further studies are indicated for groups with different needs, for example women, young prisoners and those in police custody, and at other transition points, for example following arrest and short-term custody, and at points of transition between different mental health services. Trial registration Current Controlled Trials ISRCTN98067793. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 5, No. 8. See the NIHR Journals Library website for further project information

Development of processes allowing near real-time refinement and validation of triage tools during the early stage of an outbreak in readiness for surge: the FLU-CATs Study

BACKGROUND: During pandemics of novel influenza and outbreaks of emerging infections, surge in health-care demand can exceed capacity to provide normal standards of care. In such exceptional circumstances, triage tools may aid decisions in identifying people who are most likely to benefit from higher levels of care. Rapid research during the early phase of an outbreak should allow refinement and validation of triage tools so that in the event of surge a valid tool is available. The overarching study aim is to conduct a prospective near real-time analysis of structured clinical assessments of influenza-like illness (ILI) using primary care electronic health records (EHRs) during a pandemic. This abstract summarises the preparatory work, infrastructure development, user testing and proof-of-concept study. OBJECTIVES: (1) In preparation for conducting rapid research in the early phase of a future outbreak, to develop processes that allow near real-time analysis of general practitioner (GP) assessments of people presenting with ILI, management decisions and patient outcomes. (2) As proof of concept: conduct a pilot study evaluating the performance of the triage tools 'Community Assessment Tools' and 'Pandemic Medical Early Warning Score' to predict hospital admission and death in patients presenting with ILI to GPs during inter-pandemic winter seasons. DESIGN: Prospective near real-time analysis of structured clinical assessments and anonymised linkage to data from EHRs. User experience was evaluated by semistructured interviews with participating GPs. SETTING: Thirty GPs in England, Wales and Scotland, participating in the Clinical Practice Research Datalink. PARTICIPANTS: All people presenting with ILI. INTERVENTIONS: None. MAIN OUTCOME MEASURES: Study outcome is proof of concept through demonstration of data capture and near real-time analysis. Primary patient outcomes were hospital admission within 24 hours and death (all causes) within 30 days of GP assessment. Secondary patient outcomes included GP decision to prescribe antibiotics and/or influenza-specific antiviral drugs and/or refer to hospital - if admitted, the need for higher levels of care and length of hospital stay. DATA SOURCES: Linked anonymised data from a web-based structured clinical assessment and primary care EHRs. RESULTS: In the 24 months to April 2015, data from 704 adult and 159 child consultations by 30 GPs were captured. GPs referred 11 (1.6%) adults and six (3.8%) children to hospital. There were 13 (1.8%) deaths of adults and two (1.3%) of children. There were too few outcome events to draw any conclusions regarding the performance of the triage tools. GP interviews showed that although there were some difficulties with installation, the web-based data collection tool was quick and easy to use. Some GPs felt that a minimal monetary incentive would promote participation. CONCLUSIONS: We have developed processes that allow capture and near real-time automated analysis of GP's clinical assessments and management decisions of people presenting with ILI. FUTURE WORK: We will develop processes to include other EHR systems, attempt linkage to data on influenza surveillance and maintain processes in readiness for a future outbreak. STUDY REGISTRATION: This study is registered as ISRCTN87130712 and UK Clinical Research Network 12827. FUNDING: The National Institute for Health Research Health Technology Assessment programme. MGS is supported by the UK NIHR Health Protection Research Unit in Emerging and Zoonotic Infections

Results of the First Steps study: a randomised controlled trial and economic evaluation of the Group Family Nurse Partnership (gFNP) programme compared with usual care in improving outcomes for high-risk mothers and their children and preventing abuse

Background: Family Nurse Partnership (FNP) is a home-based nurse home-visiting programme to support vulnerable parents. Group Family Nurse Partnership (gFNP) has similar aims and materials and was demonstrated to be feasible in implementation evaluations. Objectives: To determine whether or not gFNP, compared with usual care, could reduce risk factors for maltreatment in a vulnerable group and be cost-effective. Design: A multisite randomised controlled parallel-group trial and prospective economic evaluation, with eligible women allocated (minimised by site and maternal age group) to gFNP or usual care. Setting: Community locations in the UK. Participants: Expectant mothers aged < 20 years with one or more previous live births, or expectant mothers aged 20–24 years with no previous live births and with low educational qualifications (defined as General Certificate of Education at grade C or higher in neither mathematics nor English language or, if they had both, no more than four General Certificates of Education at grade C or higher). Intervention: Forty-four sessions of gFNP (14 during pregnancy and 30 in the first 12 months after birth) were offered to groups of between 8 and 12 women with similar expected delivery dates (the difference between the earliest and latest expected delivery date ranged from 8 to 10 weeks depending on the group) by two family nurses (FNs), one of whom had notified her intention to practise as a midwife. Main outcome measures: Parenting was assessed by a self-report measure of parenting opinions, the Adult Adolescent Parenting Inventory Version 2 (AAPI-2), and an objective measure of maternal sensitivity, the CARE-Index. Cost-effectiveness was primarily expressed in terms of incremental cost per quality-adjusted life-year (QALY) gained. Data sources: Interviews with participants at baseline and when infants were aged 2, 6 and 12 months. Cost information from nurse weekly logs and other service delivery data. Results: In total, 166 women were enrolled (99 to the intervention group and 67 to the control group). Adjusting for site and maternal age group, the intention-to-treat analysis found no effect of gFNP on either of the primary outcomes. AAPI-2 total was 7.5/10 [standard error (SE) 0.1] in both arms [difference also adjusted for baseline 0.08, 95% confidence interval (CI) –0.15 to 0.28; p = 0.50]. CARE-Index maternal sensitivity mean: intervention 4.0 (SE 0.3); control 4.7 (SE 0.4) (difference –0.76, 95% CI –1.67 to 0.13; p = 0.21). The sensitivity analyses supported the primary analyses. The probability that the gFNP intervention was cost-effective based on the QALY measure did not exceed 3%. However, in terms of change in AAPI-2 score (baseline to 12 months), the probability that gFNP was cost-effective reached 25.1%. A separate discrete choice experiment highlighted the value placed by both pregnant women and members of the general population on non-health outcomes that were not included in the QALY metric. Limitations: Slow recruitment resulted in smaller than ideal group sizes. In some cases, few or no sessions took place owing to low initial group size, and small groups may have contributed to attrition from the intervention. Exposure to gFNP sessions was below maximum for most group members, with only 58 of the 97 intervention participants receiving any sessions; FNs were experienced with FNP but were mainly new to delivering gFNP. Conclusions: The trial does not support the delivery of gFNP as a means of reducing the risk of child abuse or neglect in this population. Future work: A randomised controlled trial with modified eligibility to enable first-time mothers aged < 20 years to be included, and a modified recruitment strategy to enable faster identification of potential participants from antenatal medical records

Educational Inequalities in Hospital Use Among Older Adults in England, 2004-2015.

Policy Points US policymakers considering proposals to expand public health care (such as "Medicare for all") as a means of reducing inequalities in health care access and use could learn from the experiences of nations where well-funded universal health care systems are already in place. In England, which has a publicly funded universal health care system, the use of core inpatient services by adults 65 years and older is equal across groups defined by education level, after controlling for health status. However, variation among these groups in the use of outpatient and emergency department care developed between 2010 and 2015, a period of relative financial austerity. Based on England's experience, introducing universal health care in the United States seems likely to reduce, but not entirely eliminate, inequalities in health care use across different population groups. CONTEXT: Expanding access to health care is once again high on the US political agenda, as is concern about those who are being "left behind." But is universal health care that is largely free at the point of use sufficient to eliminate inequalities in health care use? To explore this question, we studied variation in the use of hospital care among education-level-defined groups of older adults in England, before and after controlling for differences in health status. In England, the National Health Service (NHS) provides health care free to all, but the growth rate for NHS funding has slowed markedly since 2010 during a widespread austerity program, potentially increasing inequalities in access and use. METHODS: Novel linkage of data from six waves (2004-2015) of the English Longitudinal Study of Ageing (ELSA) with participants' hospital records (Hospital Episode Statistics [HES]) produced longitudinal data for 7,713 older adults (65 years and older) and 25,864 observations. We divided the sample into three groups by education level: low (no formal qualifications), mid (completed compulsory education), and high (at least some higher education). Four outcomes were examined: annual outpatient appointments, elective inpatient admissions, emergency inpatient admissions, and emergency department (ED) visits. We estimated regressions for the periods 2004-2005 to 2008-2009 and 2010-2011 to 2014-2015 to examine whether potential education-related inequalities in hospital use increased after the growth rate for NHS funding slowed in 2010. FINDINGS: For the study period, our sample of ELSA respondents in the low-education group made 2.44 annual outpatient visits. In comparison, after controlling for health status, we found that participants in the high-education group made an additional 0.29 outpatient visits annually (95% confidence interval [CI], 0.11-0.47). Additional outpatient health care use in the high-education group was driven by follow-up and routine appointments. This inequality widened after 2010. Between 2010 and 2015, individuals in the high-education group made 0.48 (95% CI, 0.21-0.74) more annual outpatient visits than those in the low-education (16.9% [7.5% to 26.2%] of annual average 2.82 visits). In contrast, after 2010, the high-education group made 0.04 (95% CI, -0.075 to 0.001) fewer annual ED visits than the low-education group, which had a mean of 0.30 annual ED visits. No significant differences by education level were found for elective or emergency inpatient admissions in either period. CONCLUSIONS: After controlling for demographics and health status, there was no evidence of inequality in elective and emergency inpatient admissions among the education groups in our sample. However, a period of financial budget tightening for the NHS after 2010 was associated with the emergence of education gradients in other forms of hospital care, with respondents in the high-education group using more outpatient care and less ED care than peers in the low-education group. These estimates point to rising inequalities in the use of hospital care that, if not reversed, could exacerbate existing health inequalities in England. Although the US and UK settings differ in many ways, our results also suggest that a universal health care system would likely reduce inequality in US health care use

Cross-national mixed methods comparative case study of recovery-focused mental health care planning and coordination in acute inpatient mental health settings (COCAPP-A)

Background: Serious concerns have been identified in relation to care planning, patient involvement and consent to treatment in mental health wards, including for those patients detained under the Mental Health Act. Further evidence is needed to develop care planning interventions that embed dignity, recovery and participation for all people using inpatient mental health care. Design: We propose to undertake a cross-national comparative study of recovery-focused mental health care planning in inpatient settings. This two-phase exploratory mixed methods study will produce theory and empirical evidence to complement that developed in our current study of community mental health services to inform a future whole systems intervention study. The study is guided by a theoretical framework emphasising the connections between different 'levels' of organisation (macro/meso/micro). In phase 1 we study the macro-level through the comparative analysis of English and Welsh policy contexts. In phase 2 concurrent quantitative and qualitative data will be collected at 6 NHS Trust/Health Board case study sites (meso-level) and within each site, a single micro-level mental health ward will be selected to provide in-depth qualitative data related to care planning processes. Phase 1: We will extend our current meta-narrative mapping review (Wong et al 2013) of English and Welsh policies and the international literature on personalised recovery-oriented care planning and coordination in community settings to include inpatient settings. We will provide a review of evidence that is useful, rigorous and relevant for service providers and decision-makers and to inform Phase 2. Phase 2: We are employing a concurrent transformative mixed methods approach with embedded case studies (Creswell 2009: 215). We will conduct six in-depth meso-level case study investigations across contrasting NHS Trusts in England (n=4) and Local Health Boards in Wales (n=2), selected to reflect variety in geography and population and include a mix of rural, urban and inner city settings providing routine inpatient care. A large sample of service users (total n=300), inpatient staff (n=300) and informal carers (n=150) will be surveyed about perceptions of acute mental health care and care planning, recovery oriented practices, therapeutic relationships and empowerment using validated questionnaires. Documents and interviews with managers, consultant psychiatrists, ward staff and informal carers (n=60) will also be generated relating to local contexts, policies and practices. In each site we will also select a single inpatient ward and conduct a series of case studies embedded within each organisational case study, to explore care planning in detail. We will invite a sample of service users (total n=36) to participate in in-depth interviews about care planning and structured narrative reviews of their care plans; undertake a structured review of anonymised care plans for a further sample (n=60) of consecutively discharged patients; and conduct observation of care planning processes (n= 18). Framework method will be employed to integrate and compare textual and statistical summaries of qualitative and quantitative analyses within each case study site, informed by the theoretical framework focused on recovery and personalisation. Armed with our set of six within-case analyses we will then conduct a cross-case analysis to draw out key findings from across all sites

A mixed-methods study exploring the characteristics and needs of long-stay patients in high and medium secure settings in England: implications for service organisation

Background: Forensic psychiatric services provide care for those with mental disorders and offending behaviour. Concerns have been expressed that patients may stay for too long in too high levels of security. The economic burden of these services is high, and they are highly restrictive for patients. There is no agreed standard for ‘long stay’; we defined a length of stay exceeding 5 years in medium secure care, 10 years in high secure care or 15 years in a combination of both settings as long stay. Objectives: To (1) estimate the number of long-stay patients in secure settings; (2) describe patients’ characteristics, needs and care pathways and the reasons for their prolonged stay; (3) identify patients’ perceptions of their treatment and quality of life; and (4) explore stakeholders’ views on long stay. Design: A mixed-methods approach, including a cross-sectional survey (on 1 April 2013) of all patients in participating units to identify long-stay patients [work package (WP) 1], file reviews and consultant questionnaires for long-stay patients (WP2), interviews with patients (WP3) and focus groups with other stakeholders (WP4). Setting: All three high secure hospitals and 23 medium secure units (16 NHS and 9 independent providers) in England. Participants: Information was gathered on all patients in participating units (WP1), from which 401 long-stay patients were identified (WP2), 40 patients (WP3), 17 international and 31 UK experts were interviewed and three focus groups were held (WP4). Results: Approximately 23.5% of high secure patients and 18% of medium secure patients were long-stay patients. We estimated that there are currently about 730 forensic long-stay patients in England. The source of a patient’s admission and the current section of the Mental Health Act [Great Britain. Mental Health Act 1983 (as Amended by the Mental Health Act 2007). London: The Stationery Office; 2007] under which they were admitted predicted long-stay status. Long-stay patients had complex pathways, moving ‘around’ between settings rather than moving forward. They were most likely to be detained under a hospital order with restrictions (section 37/41) and to have disturbed backgrounds with previous psychiatric admissions, self-harm and significant offending histories. The most common diagnosis was schizophrenia, but 47% had been diagnosed with personality disorder. Only 50% had current formal psychological therapies. The rates of violent incidents within institutions and seclusion were high, and a large proportion had unsuccessful referrals to less secure settings. Most patients had some contact with their families. We identified five classes of patients within the long-stay sample with different characteristics. Patients differed in their attribution of reasons for long stay (internal/external), outlook (positive/negative), approach (active/passive) and readiness for change. Other countries have successfully developed specific long-stay services; however, UK experts were reluctant to accept the reality of long stay and that the medical model of ‘cure’ does not work with this group. Limitations: We did not conduct file reviews on non-long-stay patients; therefore, we cannot say which factors differentiate between long-stay patients and non-long-stay patients. Conclusions: The number of long-stay patients in England is high, resulting in high resource use. Significant barriers were identified in developing designated long-stay services. Without a national strategy, these issues are likely to remain. Future work: To compare long-stay patients and non-long-stay patients. To evaluate new service models specifically designed for long-stay patients. Study registration: The National Institute for Health Research (NIHR) Clinical Research Network Portfolio 129376. Funding: The NIHR Health Services and Delivery Research programm