Research Themes
Implementation Themes
The Child Sub-Theme Projects
The Q-CHAT project builds on 15 years of research into screening for ASC in toddlers by the Autism Research Centre. Previous research tested the Checklist for Autism in Toddlers (CHAT) in a total population of 16,000 children. It found the CHAT had good specificity but low sensitivity as a screening instrument. A grant from the Big Lottery Fund enabled a revision of the screening instrument to be tested on 4000 children. This is known as the Q-CHAT (or Quantitative Checklist for Autism in Toddlers (Q-CHAT) and was administered at 18-30 months of age. Follow-up of the sample is in progress now that the children are 4 years old. Validation data will be available in 2012.
The Red Flags project involves producing a Quick Referral Guide to help front line clinicians (GPs, Health Visitors, etc.,) to make a decision about when to refer someone for a specialist assessment relating to possible ASC. This will take the form of a pack of 4 brief checklists (one for each of 4 age groups: toddlers, children, adolescents, and adults). Each of these have been through validation from over 1000 cases and 3000 controls, in each of the 4 age-bands (total n = 4000). Over the coming year the team are planning to hold focus groups that will bring together relevant clinicians (paediatricians, speech and language therapists, GPs, Health Visitors), NHS staff (commissioners), public and patients (parents of children with ASC). The aim will be discuss the issues surrounding the implementation of the Red Flags Referral Guide for ASC for use by parents and health professionals.
The Pathways Project involves creating an NHS funded Clinic for Adults with Asperger Syndrome (AS) in CPFT. CPFT has had a charitably supported clinic for 10 years to diagnose AS in adults (supported by the Three Guineas Trust). Adults with AS have been overlooked by the NHS and Social Care, resulting in the Autism Act 2009 and the Autism Strategy (DoH) 2010 to design clinical pathways. CLAHRC is represented in this process via Prof Baron-Cohen who sits on the Autism Strategy Program Board in the DoH and is Chair of the NICE Guideline Development Group for adults with autism. A related pathway we have created is within Cambridge University for Students with Asperger Syndrome (AS). We have received charitable funding from the Baily Thomas Charitable Trust to create an Asperger Advisor within the Disability Resource Centre (DRC) in the University. The aim is to support such students, to prevent them dropping out, to consider how to make reasonable adjustments in the University, and to establish the links with all relevant agencies (University Counselling Service, Senior Tutors, etc.,). The Autism Research Centre is a partner in this, as are Disability Resource Centres in other universities (LSE, Oxford, Imperial).
Impact of the research
1. Implementation of the Q-CHAT and the Red Flags ASC Screening Tools in Primary Care
2. Improvements in the identification of ASC, and subsequent commissioning of health care
3. Creation of local care pathways for adults with ASC
The Adolescent Sub-Theme Projects
Transfer of Care at 17 (TC17) study
The first phase of the Transfer of Care at 17 (TC17) study has been carried out with a total of 53 young people assessed; 26 CAMH (young people currently attending a Child and Adolescent Mental Health Service) and 27 YPiC (young people currently in care). The primary focus of this first phase was twofold:
- Piloting the methodology
- Investigating possible factors which may influence successful transitions
The young people in the study were assessed to establish lifetime and current psychiatric diagnoses and service use, current psychological distress, perceived barriers to service use, cognitive functioning and personality traits.
The initial findings suggest that the transitions in care arrangements faced by both groups of young people may be compromised by persisting mental ill health. This is further complicated in the YPiC group by a greater lack of insight into these mental health needs and possibly, as a consequence, higher rates of non-compliance with services.
The next phase of the study will involve the planned follow up of these 53 young people approximately 12 months after the initial interviews, thus assessing them once they are well into the transitional phase. The baseline data will act as predictors for successful, or otherwise, changes in care arrangements and outcome data will be collected assessing their mental ill health, mental wellbeing, current psychological distress, daily functioning and engagement with services.
Teenage and Young Adult Cancer Study (TYACS)
The Teenage and Young Adult Cancer study (TYACS) is the result of a collaboration between the Department of Psychiatry and the Teenage and Young Adult (TYA) team in the Oncology Department at Addenbrooke’s Hospital. This pilot study is designed to inform the development of a larger multi-centred study and will examine the psychosocial consequences of a cancer diagnosis, establish the pattern of psychopathology and investigate the experience of the service. It will consider what is likely to contribute unnecessarily to the distress of those involved and what improvements could be made. The perspective of patients, parents and staff will be studied. A small group of patients has been involved in the development of the study and will continue to advise throughout.
The interview stage is nearly complete and 23 patients and 23 parents/nominees have taken part. All their interviews have been transcribed and are in the process of being analysed. The results will inform the content of the remaining interviews, due to be conducted with a small number of clinicians in the Autumn.
The patient advisory group will be involved in deciding the focus of the analysis and, together with a wider group, will assist in the dissemination of the findings.
Work with GPs
A multi-method study of factors affecting referral into CAMH is currently under way. Referrals from GPs are a very important source of referral, often accounting for a large proportion of all cases referred to CAMH. This study uses both qualitative (interviews with local GPs) and quantitative (analysis of historical CAMH data) methods. The interviews have been completed and will be analysed in order to draw out common themes across interviewees. The numerical data are being cleaned and analysed (some 19000 anonymised records from the previous five years up to 2011 are available). Here we have a particular interest in how many CAMH referrals come from GPs and what the likelihood of acceptance into the service is when compared to other sources. An academic report will be compiled that outlines the key findings from the data audit and highlights insights gained from the in-depth inquiry approach working with GPs. Recommendations for practice will be made as appropriate.
Development of the Perceived Barriers to Services (PBS)
We are currently developing a new self-report questionnaire (The Perceptions of Barriers to Services Questionnaire; PBS) designed to tap into feelings and beliefs that children and adolescents have about using mental health services. By developing this questionnaire we can understand more about what young people think of current mental health services and how they are likely to view any service reconfigurations. The statements are posed in a hypothetical way which means that it is not a requirement that a young person has already sought help for mental health problems. Examples of the themes the questionnaire items refer to are given below:
- Lack of personal insight
- Information about services
- Anticipation of negative reaction
- Practicalities
- General receptivity to services
- Self-consciousness
- Social support
- Fear or distrust
We plan to test and develop the items on a large sample of local adolescents and validate the questionnaire using psychometric techniques.
Mental health training work with foster carers
We hope to carry out a survey with foster carers in the area to gauge their opinions of and attitudes to mental health training. We also hope to design and pilot a mental health training package for foster carers receiving young people into care.
Roots post interview strategic analysis, publication and research translation
The methods group are responsible for the management and the analyses of the detailed data collected during the ROOTS project. This includes all the interviews and questionnaires completed by the parents and teenagers at the three assessment points (at age 14, 15.5 and 17 years), the hormones and genes taken from spit samples, and the physical activity data from the pedometers and Actiheart machines. In total data has been collected from over 2,000 people (teenagers and a parent).
The study has provided a wealth of interesting data including information about moods, feelings and behaviour, well-being, friendships, thinking style, family life, self-esteem, and early life environment. The group apply statistical techniques to this data to test hypotheses and build models to look at pathways of development through adolescence. They are particularly interested in assessing the associations between genetic, physiological, social and psychological factors over time, and their relative contribution to understanding the development of emotional and behavioural problems as well as positive outcomes during adolescence.
As an example of their work the group have a used a statistical technique called latent class analysis to help us understand the associations between patterns of early family environments occurring before the ROOTS study started. They have looked in detail at family environments reported during early childhood (pre-school), later childhood (primary school) and early adolescence. We found that the data could be summarised by four different groups during each of these developmentally sensitive time periods and over time. These groups included a low, moderate and severe adversity class with the addition of a fourth class characterised by harsh or lax parenting style or a lack of maternal affection. Family adversities in the early years occur as multiple rather than single experiences. Although some children escape adversity, for many this negative family environment persists over the first 15 years of life. Being a severe adversity heightens the risk for behavioural and emotional problems in adolescence.
Impact of the research
- Establish areas of service design and structure where improvements can be made in terms of provision for young people’s mental health needs during periods of transition.
- Develop a training package which changes how foster carers work with young people entering care in terms of identifying and providing for their mental health needs
Old Age & End of Life Care Theme
Dementia and Mental Health in Old Age: current and planned research studies
The Dementia and Mental Health in Old Age research group are currently undertaking and planning the following programmes of research, some in collaboration with other CLAHRC-CP themes and service partners as indicated:
Improving dementia care through evidence based research synthesis:
Systematic reviews of diagnostic test accuracy in dementia
(collaboration with the Public Health Theme, NIHR Cochrane Collaboration)
A programme of 12 diagnostic test accuracy reviews will cover the full range of important imaging and laboratory biomarkers, and of simple clinical tests. In addition, a programme of 15 updates will focus first on interventions, both pharmacological and non-pharmacological, which are currently in clinical use in the NHS.
Systematic review of screening in dementia
(collaboration with the Public Health Theme, BUPA Foundation)
A programme of three linked evidence reviews to systematically identify and appraise the literature on 1) the potential effects of population screening, 2) the suitability of available screening instruments and 3) the risks and benefits arising from population screening for dementia.
Systematic review of dementia outcomes re: non-pharmaceutical interventions
(collaboration with the Public Health Theme, Alzheimer’s Society)
Neuropsychiatric symptoms and challenging behaviours are among the most devastating aspects of caring for a dementia sufferer. The Department of Health is calling for reductions in the widespread use of anti-psychotic medication but to date there has been no comprehensive review of the effectiveness of alternative interventions across stages of the disease and for different settings. This project examines over thirty recent systematic reviews in order to summarise the effectiveness of these interventions for different types and severity of dementia, outcomes and settings so that best evidence is available to policy-makers, commissioners and clinicians.
Informing service needs assessment, commissioning and development:
Joint Strategic Needs Assessment – Older People and Dementia
(collaboration with the Public Health Theme)
NHS Cambridgeshire’s Adult Health and Well-being team requested CLAHRC-CP input on the best available and forthcoming evidence for the 2010 update of their JSNA for older people. Discussions and sharing of evidence on dementia identification, support needs and treatment options helped inform commissioning.
Older People’s Mental Health services redesign
(collaboration with the Public Health Theme & Engineering Design Centre).
The comparison of available tools to capture patient outcomes (i.e. clinical, satisfaction and quality of life) and are being tested with input from health care professionals.
Dementia Register scoping exercise
(collaboration with the Public Health Theme)
Currently there is no national or local register of people with dementia as there is for other diseases such as cancer. A dementia disease register would play an important role in contributing to medical knowledge and health care and would be used for epidemiological research and needs assessment, as well as to improve clinical care, and service quality and to perform technology assessment. Initial scoping has highlighted the need for further cross-sector collaboration involving CLAHRC themes, the Cambridge BioMedical Resource Centre and all service sectors.
Factors associated with people declining ambulance transport to hospital
Previous research, mainly in the USA, has found considerable variations in the prevalence of patients declining transport to hospital when an ambulance is called. Those who decline are reported to have poorer outcomes and pose significant medical, legal and ethical dilemmas for clinical staff. We hypothesise that this group of patients will present with clinical factors associated with impaired decision-making capacity. This project aims to ascertain the prevalence of patients declining transport by ambulance to hospital against clinical advice and to identify key demographic and clinical factors associated with this group of patients.
Deprivation of Liberty Safeguards for people of all ages with mental ill-health or intellectual disability
(collaboration with the Adult Theme)
This project explores the interface between aspects of recent legislation – the Mental Capacity Act, Mental Health Act and Deprivation of Liberty Safeguards – with regard to people with mental health needs across the life-course, for example as a result of learning disabilities or dementia.
Implications for policy, planning and practice from population research:
Demonstrating the impact of population research: The case of MRC-CFAS
(collaboration with the Public Health Theme)
Bibliographic study with qualitative element exploring the process of policy impact.
Informing service planning for an ageing population: implications of research findings from the Cambridge City over-75s Cohort study
Drawing on a quarter-century of research in collaboration with local general practices, a series of linked projects are providing scarce data on levels of physical and cognitive function, support needs and preferences of the fastest growing section of the population – the ‘older old’. Areas of current focus include:
Characterisation of disability and cognitive impairment of the very old at the end of life
Transitions and place of care of the very old at the end of life
Formal service and informal support of very old people at the end of life
Experiences and perceptions of older old people and their care-givers of care towards the end of life
End of life care preferences of very old people
Intervention studies in development:
Sharing previous research findings with practitioners, service users and carers is helping develop new applied research projects:
Exercise and activity interventions for people with dementia in the community and their carers
Hip fracture – a trigger for supportive and palliative care assessment for people with dementia
Evaluation of innovations in the acute sector:
Supported home assessment for people with dementia discharged from hospital
(collaboration with the Public Health Theme, Addenbrooke’s Hospital and Cambridge Community Services)
The new service is designed to improve the quality of the discharge planning process and decrease the costs of hospital stays for dementia patients waiting residential care placement. The pilot is set up to give people with dementia who are admitted to hospital a 2-week period of supported home assessment. We are evaluating the feasibility of setting up such a scheme.
Specialist delirium and dementia ward in Addenbrooke’s Hospital
One of the Department of Medicine for the Elderly wards has been developed as an examplar of good practice in the care of patients with impaired cognition due to delirium or dementia or both, to establish a model of care that can be rolled out across the hospital. Changes include staff training, improved information for relatives and dementia-friendly environmental modifications. The multi-disciplinary team evaluating the development includes both research and liaison psychiatry input from CLAHRC-CP’s Old Age theme.
Specialist dementia nurse secondment
One year’s pilot funding enabled the secondment from Cambridgeshire and Peterborough Foundation Trust to Addenbrooke’s of an experienced Dementia Specialist Nurse. We are advising on the evaluation of the benefits to the trust of this new post.
Mental health first aid training
This hospital-wide programme has been running for over two years, initially started in response to awareness that staff in all departments needed further training in recognition of mental health needs Liaison psychiatry have requested CLAHRC-CP help in evaluating the impacts for colleagues and patients of all ages.
CLAHRC PhD Projects:
Anxiety, depression and health services in older people
Matthew Prina
This PhD project is researching common mental disorders in later life with a particular focus on health services. In more details the aims are to study the epidemiology and co-morbid nature of anxiety and depression in older people; map care pathways for depression and anxiety in later life, following people through their care journeys; investigate the link between common mental disorders and non-psychiatric hospitalisation episodes; and evaluate some regional health policies and services (e.g. IAPT – Improving Access to Psychological Therapies).
Behavioural and psychological symptoms of dementia: understanding the course, causes and impact in the population
Rianne van der Linde
This PhD project explores the prevalence of different behavioural and psychological symptoms of dementia (BPSD), the tools available for BPSD assessment, and the contribution of these symptoms to care-giver stress and decisions regarding care options. A focus on population-based data and systematic evidence synthesis, with the addition of qualitative research methods to inform interpretation, will ensure that these research findings have broad impacts for policy and practice.
CLAHRC Fellows Project:
The impact of dementia on ambulance services
Uju Okereke
The National Audit Office report Improving Dementia Services in England (2010) highlights the need for all NHS organisations, including the ambulance service, to improve dementia care and avoid unnecessary hospital admissions. Patients with dementia are more likely to have an unplanned admission to hospital compared with those without the disorder. This CLAHRC fellowship project is exploring how dementia impacts on the ambulance service and affects decisions made about admission and the patient experience, aiming to inform the development of integrated care pathways for those with dementia.
Innovations in person-centred care for people with dementia living in care homes
Alistair Gaskell
This project aims to build on the work that the CAMTED team (involving the Older Peoples Mental Health Service, Cambridgeshire and Peterborough Foundation Trust; NHS Cambridgeshire; Cambridgeshire County Council) has been doing over the past four years offering training and support to care homes in Cambridge, South and East Cambridgeshire. The project intends to offer intensive work with care homes in the Huntingdonshire area, to help them to improve their knowledge and confidence in important aspects of dementia care. The CLAHRC PH & Old Age themes are providing support for the evaluation of the programme.
Developing data registration and retrieval to further research and improve patient care
Pranathi Ramachandra
(in collaboration with implementation themes: Public Health, Judge Business School Engineering Design Centre)
This project aims to improve the quality of data registration and retrieval methods, especially recording diagnoses, within the Older People’s Mental Health Services (OPMHS) in Cambridgeshire and Peterborough NHS Foundation Trust (CPFT). With the objective of improving patient care, processes will be developed to offer new patients the option to have recorded their consent for being contacted regarding participation in current or future research studies. A longer term goal towards which this project will contribute will be integrating the information so stored with a regional and ultimately national disease (dementia) register.
Costs and quality comparisons of two models of service delivery for early diagnosis and care of patients with dementia
Judy Rubinsztein
(collaboration with the Public Health implementation theme)
The National Dementia Strategy supports early diagnosis and the provision of care for patients with dementia and their carers’, but does not specify how this service should be delivered. The project is comparing both the costs and the quality of care offered to patients and carers by two different models of service delivery: multidisciplinary community mental health teams (CMHTs) providing a range of services to older patients with mental health issues versus services which offer dedicated “memory clinics” with separate CMHTs to support other referrals.
The Dementia and Mental Health in Old Age Team currently comprises:
(see people for further details)
Dr Tom Dening ** Consultant Old Age Psychiatrist, CPFT Medical Director
Dr Jane Fleming *** Senior Research Associate
Dr Pranathi Ramachandra ** Consultant Old Age Psychiatrist, CPFT Research Lead, CLAHRC Fellow
Dr Ayesha Khan * Research Associate (with the Public Health Implementation Theme)
Dr Nadja Smailagic * Research Associate (with the Public Health Implementation Theme)
Alistair Gaskell *** CLAHRC Fellow
Uju Okereke *** CLAHRC Fellow
Matthew Prina ** PhD Student (with the Public Health Implementation Theme)
Rianne van der Linde PhD Student (with the Public Health Implementation Theme)
End of Life Care Team: current and planned research studies
The End of Life Care Research Team, funded by the NIHR CLAHRC and other sources currently comprises:
Dr Stephen Barclay ** – Principal Investigator, University Lecturer
Dr Jane Fleming *** – Senior Research Associate
Dr Zoe Morris *** – Senior Research Associate
Dr Morag Farquhar ** – Senior Research Associate
Dr Gemma Clarke ** – Research Associate
Sue Boase ** – Research Associate for CAPE study
Clare Crang * – Research Associate for Macmillan PACE study
Fiona Longstaff ** – Research Nurse for CAPE study and Hospice at Home evaluation
Natalie Momen *** – Research Assistant
Rebecca Whyte * – Research Assistant for DIME Medical Student Education study
Erica Borgstrom *** – PhD student
Dr Karen Petchey * – Academic GP Registrar
Dr. Laurence Kemp * – Academic GP Registrar
Katie Yorke * – Administrative Assistant for Hospice at Home evaluation
Angela Harper *** – Research PA to Dr Barclay
*** = fully CLAHRC funded
** = part-CLAHRC funded
* = not CLAHRC funded
The CLAHRC team is based in the Institute of Public Health (IPH), University of Cambridge, and has funding until September 2013. Team members funded from sources other than CLAHRC are based in the General Practice Research Unit in the IPH. The group are currently undertaking the following programme of research:
1) Hospital admissions at the end of life (CLAHRC funded)
A reduction in the number of people dying in hospital is one of the key aims and quality markers for both the National NHS and Cambridgeshire PCT End of Life Strategies. This study investigates the reasons why patients with cancer, Chronic Obstructive Pulmonary Disease and dementia are admitted to hospital close to the end of life and details their experiences of care once in hospital. This qualitative exploratory study aims to identify factors associated with an end of life hospital admission, adopting a case study approach: interviews will be held with bereaved relatives and health care professionals in both the community and acute settings.
Currently awaiting Research Ethics and Research Governance decisions.
2) Evaluation of a Specialist Palliative Care professional advice line. (CLAHRC funded).
At the request of the Cambridgeshire PCT, the CLAHRC End of Life Care team have conducted an audit over a six month period of Out of Hours telephone calls by health professionals seeking Palliative Care advice from the three hospices serving NHS Cambridgeshire patients. The reasons, timing and outcomes of all telephone advice requests were documented.
Report written for PCT and one paper currently in draft form.
3) Template for cancer care reviews in primary care. (Macmillan funded)
A feasibility study of a template for cancer care reviews in primary care. Led by GPs in England and Scotland, the End of Life Care team ran the England arm with six GP practices. The template offers guidance on areas to be covered in cancer care review appointments, from time of initial diagnosis onwards. Data from GP records and interviews with patients and GPs.
Study report completed with journal papers in draft form.
4) “Patient choice” at End of Life: An Anthropological Exploration. (CLAHRC funded)
This PhD student’s project aims to provide a contextualised qualitative account of what is involved in ‘choosing’ end of life care. Through ethnographic research, this project seeks to discover what ‘choice’ means for patients, families, carers and health care professionals, how the differing concepts of choice and aspects of end of life care interact, and what is involved in decision-making at end of life. By placing the observations in the context of policy and practice, this research will open up new ways of approaching patient ‘choice’, how services are evaluated, and adapting provision to suit the particular context of the area.
Currently in Year 3 – field work drawing to a close.
5) End of Life Care for the Oldest Old (CLAHRC funded).
The project “Living and dying in extreme old age” combines qualitative and quantitative methods to examine end-of-life care issues from the perspective of very old people and their carers. This is a collaboration with the Cambridge City over-75s Cohort study, the CLAHRC Old Age Theme and the GP Research Unit. Research in progress includes the characterisation of cognitive impairment, physical disability, emotional well-being and self-rated health for the very old in their last year of life; their formal and informal support, service use and place of care trajectories; experiences and perceptions of care and attitudes towards quality of life at the end of life and approaching death from both older old people’s and their carers’ perspectives.
Several papers published with more in draft form.
6) End of Life Care discussions in heart failure: a systematic review. (CLAHRC funded).
A completed systematic literature review of the literature concerning the preferences of health care professionals and patients with heart failure with regards to discussions about end of life care, the timing and the barriers, cues and facilitators to these discussions. The results have been shared with colleagues in the End of Life Care Programme, the NHS Improvement Agency and the British Heart Foundation.
Two papers published.
7) End of Life Care discussions in COPD: a systematic review. (CLAHRC funded)
A completed systematic literature review of the literature concerning the preferences of health care professionals and patients with advanced COPD with regards to discussions about end of life care, the timing and the barriers, cues and facilitators to these discussions.
Main journal paper submitted.
End of Life Care discussions in cancer: a systematic review. (Deanery funded)
A systematic literature review of the literature since 2005 concerning the preferences of health care professionals and patients with cancer with regards to discussions about end of life care, the timing and the barriers, cues and facilitators to these discussions.
Data extraction currently underway.
9) GP and DN educational needs assessment: a questionnaire study (CLAHRC funded)
A questionnaire study of all the General Practitioners and Community Nurses in Cambridgeshire and Peterborough, investigating their training and knowledge in key areas of Palliative Care. The data from this survey are informing several major educational initiatives in the area (funded by HIEC (Health Innovation and Education Cluster) and Eastern Deanery) with which the CLAHRC team are closely associated.
Report completed with two papers in draft form
10) Analysis of national datasets of admissions close to the end of life. (CLAHRC funded)
Work with the South West Public Health Observatory and the NHS End of Life Care Intelligence Network on an analysis of HES (Hospital Episode Statistics) and ONS (Office for National Statistics) mortality datasets in an investigation of:
a) Admissions from care homes within the last week of life
b) Admissions from home for cancer patients within the last 2 days of life
Initial work has enabled us to match these two datasets and generate some baseline data. Further analysis is underway of 13 years of data (1998 to 2010) including a trend analysis.
Currently awaiting arrival of this large dataset from SWPHO.
11) PACE study – patients’ Plans And Care Expectations. (Macmillan funded)
An investigation of the existence and nature of the transitions to Palliative and End of Life Care in two contrasting illnesses, incurable lung cancer and severe COPD. Qualitative interviews are seeking the views of patients, their lay carers and health professionals concerning the appropriateness of a Palliative Care approach and conversations concerning the End of Life.
Field work currently underway
12) CAPE study: Care Pathways at the End of life. (CLAHRC and NIHR RfPB funded)
Through retrospective clinical records review of 400 deaths from 20 GP practices, clinical focus groups and inteviews with bereaved carers, this study seeks to; characterise the patterns of care need of people approaching the end of life in the community and map their current pathways of care provision and place of death; investigate the health costs of the identified care pathways and place of death; develop a toolkit for Primary Care Teams to review care and better align patient needs to care provision.
Awaiting final decsions from Research Ethics and Research Governance applications.
13) Artificial nutrition decisions for people at risk of lacking capacity. (CLAHRC funded)
Artificial nutrition choices when someone is approaching the end of life are complex, the more so when decisions need to be made on behalf of someone who lacks the mental capacity to decide for themselves. Through systematic literature review, observation of the Addenbrooke’s Hospital Feeding Issues MDT meetings and hospital case notes reviews, this study investigates how decisions are made to provide, withhold or withdraw artificial nutrition. This is a collaboration between the End of Life Care and Adult Themes of CLAHRC; we plan to develop an NIHR RfPB grant application during 2012.
Literature review and field work currently underway.
14) “Just in case” bags: anticipatory prescribing in End of Life Care. (Deanery funded)
Community teams are being encouraged to prescribe a number of drugs for patients near the end of life, to be stored at home “just in case” they are needed. Dr Laurence Kemp, an academic GP Registrar undertook an evaluation of this practice for his MSc Dissertation, with SB as his co-supervisor.
Report complete journal paper in preparation
15) Place of death in dementia. (SHA funded)
A systematic literature review of place of death for people with dementia, and preferences for place of death of patients and their relatives and health care professionals. Undertaken by SpR in Old Age Psychiatry, Dr Raja Badrakalimuthu, this review plans to lead on to further field work concerning choice at the end of life in dementia.
Paper submitted
16) Medical student education in End of Life Care (Clinical School and PCT FSF funded).
The Medical Education Research Group of the Clinical School have been running a longitudinal cohort study of preclinical and clinical medical students in the University of Cambridge since 2007. Additional funds have been obtained for a literature review and a detailed analysis of the data concerning students’ attitudes towards End of Life Care and their Death Anxiety.
Data analysis commencing early 2012.
17) Hospice at Home – a service evaluation (Hospice Charity and PCT FSF funded)
The Arthur Rank House hospice charity have recently invested in a large-scale expansion of their Hospice at Home service in Cambridgeshire. The CLAHRC team have been invited to undertake a formative evaluation of this service, through routine data collection and interviews with patients, lay carers, staff and key stakeholders.
Field work commenced late 2011.
Impact on service, policy and practice
Many of the broad portfolio of projects associated with the Old Age and End of Life Care Theme have close links with stakeholders in service user, carer, practitioner, commissioner and policy sectors. Ensuring that findings from research, evaluation and other collaborative work have impact where most relevant is a priority, as the following examples highlight:
The questionnaire study of Cambridgeshire and Peterborough GPs and CNs produced a report which was disseminated locally. This highlighted educational and training needs among the professions in these areas. This information will be used in the educational initiative recently funded by the Cambridgeshire HIEC and it is understood that discussions have taken place about the results by people within the PCTs involved in training of these professional groups.
The team has been invited to meetings with clinicians and managers within the PCTs to discuss the findings – to disseminate and explain the research. These meetings have also informed the research team of the context of some of the findings.
The audit of hospice advice lines was carried out to inform Cambridgeshire PCT of changes required to the current arrangements for health professionals to obtain advice on end of life care issues. A report outlining the findings was distributed to relevant parties in the PCT and is to be presented to NHS Cambridgeshire’s End of Life Care Stakeholders group.
The National End of Life Care Programme featured publications reporting evidence synthesis results from two reviews conducted by members of the team on the availability of bereavement support and on end of life care discussions in heart failure. For the latter, meetings with the NHS Improvement Agency and the British Heart Foundation were also crucial in achieving wider dissemination.
Researchers, practitioners and service users involved in a wide range of this theme’s dementia-related projects took part in a series of ‘market-place’ workshops at a stake-holder event held in September 2011 “Dementia Research: Knowledge into Care”. The combination of high profile speakers presenting updates on research and practice innovation in the region, smaller group sessions to outline and discuss CLAHRC-linked projects, and opportunities for networking all contributed to those who attended rating the day an excellent way to forward the aims of bridging the translation gaps from research to practice and back.
Public Health Theme Projects
Measuring length of stay (LOS) in mental health. Project to measure the average LOS and LOS trends for admissions to the South Essex Partnership University NHS Foundation Trust (SEPT). Aim is to develop a model that more accurately reflects the true LOS of patients with chronic mental health diagnoses.
Economic Evaluation of IAPT (Improving Access to Psychological Therapies)
This project comprises two studies. In collaboration with Peter Jones and Tim Croudace, the first is an economic evaluation to assess the clinical and cost effectiveness of low intensity talking therapies (delivered face-to-face versus over the telephone), in the IAPT programme in East of England region. The second is to estimate the cost of the IAPT programme in selected PCTs in the East of England region.
Projecting the prevalence of dementia over the next 25 years
Due to population ageing, the prevalence of dementia is likely to increase substantially in future years. This project reviews the methodologies employed by current projections. It will then develop more accurate projections based on trends in underlying risk factors as well as accounting for possible treatment scenarios. Implications for health and social care services will also be assessed.
The impact of population research on public health policy: the case of CFAS. Bibliographic study followed by qualitative interviews with key stakeholders to explore how, and which elements of this longitudinal study and its findings have had the most impact at the level of i.e. how was knowledge transfer achieved?
Health Innovation Education Cluster Evaluation Support
Assisting with the evaluation of various training programmes across Cambridgeshire and Peterborough for health professionals. This included the development of a measure for training care home staff with end of life care packages, analysing data from doctors on their knowledge of symptom management at the end of life, and advising on a model for evaluating training for nursing staff in an acute hospital in picking up mental illness inpatients with long-term illnesses
Collaborations with the Adult theme
Costing the Service User Journey. Part of the adult theme SUJ study, looking at the cost of community learning disability services offered to people with mental health and/or behaviour problems. A tool for measuring service use and cost was developed and is currently being reviewed. The tool may be used as part of an economic evaluation of Adult Brain Injury services.
Life expectancy and rare neuro-developmental disorders associated with Learning Disability. To establish a network to work with families of persons with rare developmental disorders such as Prader-Willi and Williams syndrome, as well as Down’s syndrome. This project involved studying determinants of health and well-being and understanding causes of death & life expectancy.
Collaborations with the Engineering Design theme
Cost and benefit analysis of Serious Incident Investigations. A study led by EDC with public health team input. This research is assessing the costs and benefits, process, causes and patterns of SI investigations.
Evaluation Project – Older people service redesign
NHS Cambridgeshire has been piloting a multi – agency older people‘s primary care mental health service which is planned for rollout in 2011 by service redesign. This pilot has enabled individuals with mild memory loss to receive a service and provide early diagnosis where appropriate. Through collaboration with the CLAHRC CP, NHS Cambridgeshire will monitor progress and measure the impact of service redesign on selected indicators of quality, patient outcomes and selected cost drivers. Mapping of service redesign ongoing; analysis plan for outcomes & cost in development
Collaborations with the Old Age theme
Systematic Reviews of population screening for dementia. This project consists of a set of systematic reviews that seek to identify the existing evidence around population screening for dementia. The key focus of the reviews is threefold: what are the existing screening tools for dementia and how good are they for population screening? Attitudes to population screening for dementia and the impact of population screening for dementia. The outcomes of these reviews will be utilised to inform public, policy, research and practise.
Cochrane Systematic reviews of Diagnostic Test Accuracy (DTA) in dementia.
The Cochrane Dementia and Cognitive Improvement group (CDCIG, Oxford), in collaboration with the Cochrane Diagnostic Test Accuracy support unit (DTA, Birmingham) and the Institute of Public Health (IPH, Cambridge) is working on a series of Cochrane Diagnostic Test Accuracy reviews in dementia, which is a part of the NIHR Cochrane Collaboration Grant Scheme. This programme includes a suite of 12 DTA reviews. The evidence of the accuracy and utility of diagnostic tests in dementia is currently fragmented. The aim of this programme is to evaluate and synthesise the existing evidence and to integrate the results of Cochrane DTA reviews on dementia into reports for clinicians, policymakers, researchers and patients and carers.
A Dementia Register – Options Appraisal. A strategic report with a list of options to support decision-making with regard to establishing a dementia register in the East-of-England. This project is now being led by Dr Pranathi Ramchandra, Old Age Psychiatrist and CLAHRC Fellow.
Behavioural and psychological symptoms of dementia: understanding the course, causes and impact in the population, Rianne van der Linde
This PhD project explores the course, causes and impact of different behavioural and psychological symptoms of dementia (BPSD). It includes a literature review on the tools available for BPSD assessment, analyses of the longitudinal course of the symptoms and their associations with neuropathology and the contribution of these symptoms to decisions regarding care options. A focus on population-based data and systematic evidence synthesis, with the addition of qualitative research methods to inform interpretation, will ensure that these research findings have broad impacts for policy and practice.
Anxiety, depression and health services use in Older People, Matthew Prina
This PHD project aims to research common mental disorders in later life with a particular focus on health services. In more details we aim to study the epidemiology and co-morbid nature of anxiety and depression in older people and map their care pathways, following people through their care journeys. The biggest part of this project is the investigation of the link between common mental disorders and non-psychiatric hospitalisation episodes. This consists of a systematic review, and two data linkage studies. One carried out in the Netherlands, and one in Australia. We also want to evaluate some of the regional services, such as IAPT – Improving access to psychological therapies, for the older population.
Evaluation Project –– Supported Home Assessment for People with Dementia (SHAPED) Pilot (Cambridge University Hospitals NHS Foundation Trust).
The new service is designed to improve the quality of the discharge planning process and decrease the costs of hospital stays for dementia patients waiting residential care placement. The pilot is set up to give people with dementia who are admitted to hospital a 2-week period of supported home assessment.
Other collaborative projects
Overview of the literature on non-pharmaceutical alternatives to anti-psychotic use in dementia.
Collaboration on a systematic review of the effectiveness of alternatives to antipsychotics for the DH to inform their policy formulation. This project is linked to the appointment of a knowledge broker (recruitment in progress) who will work as part of the SHA team to implement the policy but working collaboratively with the public health team to facilitate the dissemination of the policy locally and regionally.
Economic Evaluation of CAMEO. A study to conduct an economic evaluation of early intervention for psychosis. Under discussion.
IAPT Adult research and evaluation. We have developed PCT-specific evaluations of the provision of IAPT services in the East of England. This work will form the basis for a best practice guide for wide dissemination and support performance management. In addition, we have modelled the early course of change in clinical outcomes and conducted a cost-effectiveness analysis comparing low versus high intensity treatment.
IAPT Children and Young People. CLAHRC CP named in recently approved bid to pilot the next IAPT programme. We will be assisting with the evaluation later in process.
Evidence Based Mental Health Screening Policy in Europe. Developed a five-country collaboration to look at better stratification for personalised mental health programmes. Result of application pending but further opportunities being developed within EU FP7, particularly in relation to the inclusion of industry and running interventions.
Evaluation of Mental Health First Aid. Will assist with the training of Addenbrooke’s staff on delivering basic mental health care in urgent situations, including recognition of symptoms and best approaches.
