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4d75ba35-779f-4c29-9dd6-a4bbffb8ad71 Determining the effectiveness and outcomes of innovative interventions for people who have used stalking behaviours: An extension of the exploration of the Hampshire & Isle of Wight Multi-Agency Stalking Partnership (MASP) Chief Investigator: Dr Sara Afshar Morgan, Associate Professor of Public Health, Faculty of Medicine, University of Southampton Team: Mrs Katerina Porter, Senior Research Assistant, Faculty of Medicine, University of Southampton, Lisa Allam, Commissioning Manager, Hampshire & Isle of Wight Office of the Police & Crime Commissioner Dr Kirsty Butcher, Principal Clinical Psychologist & Clinical Lead, Multi-Agency Stalking Partnership, Hampshire and Isle of Wight NHS Foundation Trust Detective Chief Inspector Abigail Leeson, Hampshire & Isle of Wight Constabulary Dr Andrew Bates, Regional Forensic Psychologist, National Probation Service Rachel Windebank, Operations Director, STOP Domestic Abuse Partners: Hampshire and Isle of Wight NHS Foundation Trust, University of Southampton, Hampshire & Isle of Wight Office of the Police & Crime Commissioner, Hampshire & Isle of Wight Constabulary, National Probation Service, STOP Domestic Abuse. Start: 1 October 2024 End: 31 March 2026 Summary People often use the word ‘stalking’ to describe using social media to learn details about someone of interest. However, in law enforcement, the word ‘stalking’ is used to describe something much more serious: ‘fixated, obsessive, unwanted and repeated behaviour that makes [the survivor] feel pestered and harassed’, alarmed, distressed, or afraid. [1] In fact, the use of stalking behaviours can lead to serious violence; in a recent review of female deaths over 3 years, stalking behaviours were found to be present in 94% of cases [2] . People who use stalking behaviours often suffer from psychological inflexibility which causes them to fixate on particular individuals. Recently, psychologists have been using various psychological therapies to attempt to treat the obsessiveness that people who stalk suffer from. The use of these therapies has been evaluated in the short-term, with small groups. Results have been positive, but there is a need for longer-term follow-up of people who have used stalking behaviours, to determine whether psychological therapies are useful in helping people to stop stalking. This research study aims to explore the experiences of individuals who have used stalking behaviours, and who have completed a psychologist-led stalking intervention (PLSI), to learn whether participating in psychological therapies is useful in preventing further stalking. We will gather information by doing interviews with people who have completed a programme of psychological therapy to stop stalking. We will do up to 6 interviews with each person, over the course of one year, to understand their experiences. We will also obtain information from the Police to learn whether any of the individuals have been reported as using stalking behaviours, after having completed the psychological therapy. We will use this information to build a picture of the reasons why the psychological therapy might or might not work, in various cases, to prevent future stalking. We will compare the experiences of the people who have used stalking behaviours, with information from victim-survivors and professionals. There is already an evaluation and research study ongoing, to learn more about the use of these psychological therapies for stalking prevention. This study will be an extension of the existing study, to follow up existing research participants over a longer period of time. Longer-term follow-up of people who have used stalking behaviours is scarce. This original research will provide an important look into the experiences of people who have used stalking behaviours and completed psychological therapies to try to treat the underlying fixation. The ultimate goal of the psychological therapy is to prevent future violence. The results of the research will be fed back to all research partners directly (Hampshire & Isle of Wight Constabulary, Hampshire & Isle of Wight Office of the Police & Crime Commissioner, Southern Health NHS Foundation Trust, National Probation Service), as well as being submitted for publication. Results will also be presented in an easy-to-read format, for use by research partners to share with their potential clients (including people who have used stalking behaviours, and their victim-survivors).

257ff9a8-4656-4b12-a5fc-4ef46bb650ab COMPLETED: Neuro Online (Formerly From Clinic to E-Clinic): Evaluating the Implementation of the My Medical Record Platform in Young-Onset Dementia and Huntington’s Disease. Principal Investigator: Dr Chris Kipps Team members : Dr Chris Kipps, Neurologist and Hon Senior Lecturer, University of Southampton Dr Sarah Fearn, Senior Research Fellow, University of Southampton Dr John Spreadbury, Senior Research Fellow, University of Southampton Dr Alex Young, Senior Research Assistant, University of Southampton Dr Rachel Chappell, Project Manager Start : 1 June 2020 Ends : 31 May 2027 Project Partners : University of Southampton, University Hospital Southampton NHS Foundation Trust, The Health Foundation Lay summary: Digital health platforms can improve care and support self-management, but only if they actually work and if people make use of them. The Neuro Online study aims to better understand how the online platform My Medical Record can be used to support and improve care for people with long-term neurological conditions. Aims: We want to better understand the factors that influence the uptake, use, and effectiveness of an online care and self-management platform for patients with long-term neurological conditions, their carers and the healthcare professionals who care for them. Design and Methods: The Neuro Online study will use surveys and My Medical Record system data to better understand how and why people use the Neuro section of My Medical Record. We will recruit 2000 patients, carers and healthcare professionals to participate for up to 7 years. During this time we will track how they use the online platform and their thoughts on it. We will also ask patients and carers about their well-being and their patient activation measure so that we can compare their experiences with the platform to this information. Participants will have the opportunity to participate in a number of additional sub-studies, which focus on particular issues such as quality of life, what individual characteristics are associated with use (or not) of the platform, and whether certain functions of the platform such as care planning are useful. A small number of patients will be asked to participate in face-to-face interviews to assess their use of the platform. NHS staff will be surveyed to see if platform use changes how they deliver care. As online platforms are increasingly being developed for the NHS, we hope the study will help understand how to make them relevant, useful and appealing to use. The findings should help to optimise the design and usefulness of these online tools, with the aim of supporting and improving the delivery of care. What did we learn? What Next? • We will continue to recruit to the study until 2027 •Look at other characteristics e.g. years since diagnosis; education • Link to: literature review qualitative work work on digital healthcare in general (Neuro Digital) outcome measures optimisation of outpatient care • Feedback to stakeholders Related publication: A Comprehensive Literature Search of Digital Health Technology Use in Neurological Conditions: Review of Digital Tools to Promote Self-management and Support

9e2c7f6f-813a-4237-9695-46d21cbe9cea COMPLETED: Development, evaluation and provision of an intervention for primary and community NHS staff to help carers and homecare workers supporting people living at home with dementia with their continence. NIHR Three Schools Dementia Research Programme: NIHR School for Social Care Research, NIHR School for Primary Care Research and NIHR School for Public Health Research Team Lead investigator : Dr Cathy Murphy, Senior Research Fellow, School of Health Sciences, University of Southampton Co-i: Prof Mandy Fader, Professor of Continence Technology, School of Health Sciences, University of Southampton Co-i: Prof Miriam Santer, Professor of Primary Care Research, Faculty of Medicine, University of Southampton, NIHR School for Primary Care Research, Bournemouth based GP Co-i: Dr Leanne Morrison, Lecturer in Health Psychology, School of Psychology & Primary Care Research Centre, University of Southampton, NIHR School for Primary Care Research Co-i (PPI): Jane Ward, Alzheimer’s Society Research Network Member, co-founder of Dementia Friendly Hampshire, Patient Research Ambassador Co-i: Prof Jill Manthorpe, Professor of Social Work, Director of NIHR Policy Research Unit in Health & Social Care Workforce, King’s College London – Associate Director of NIHR School for Social Care Research Start date: 1st June 2022 End date: 28th Feb 2024 We found that Healthcare professionals wanted an easy and quick to use intervention to sign-post carers to continence care guidance. Homecare workers would welcome resources aimed at having difficult continence conversations The findings led us to develop the first evidence-based website to support healthcare professionals to provide continence advice to the carers of people living with dementia. The intervention also provides carers with detailed, practical self-management guidance. The website is www.demcon.org.uk A summary of the work can be found in this article: C Murphy, B Bradbury, M Fader, L Morrison, M Santer, J Ward, H Chester. Supporting continence care for people living at home with dementia. 22 APRIL, 2024. Nursing Times What we did with the new knowledge The findings have led to the first evidence-based intervention to support healthcare professionals to provide continence advice to the carers of people living with dementia. The intervention supports healthcare professionals to initiate conversations and then to sign-post carers to detailed, evidence based self-management guidance. The website can be accessed here: www.demcon.org.uk What are we doing next? The project has provided foundational findings for the next phase of work which includes developing a new intervention to support homecare workers to initiate continence conversations with people living at home with dementia. This work (DemCon2) is being funded by NIHR Three School’s Dementia Research Programme and will start Autumn 2024.

e8875589-cdeb-4504-8e6c-2c5922e46645 ADOPTED PROJECT: Breast Cancer Choices: Evaluation and implementation of a digital patient-centred decision aid to support genetic testing in mainstream care. ADOPTED PROJECT: Breast Cancer Choices: Evaluation and implementation of a digital patient-centred decision aid to support genetic testing in mainstream care. Principal Investigator: Dr Katherine Morton, Senior Research Fellow Team: Dr Gillian Crawford, Consultant Genetic Counsellor, University Hospital Southampton NHS Foundation Trust, Dr Lucy Side, Consultant and Lead Clinician in Clinical Genetics, University Hospital Southampton NHS Foundation Trust, Dr Jackie Chandler, Evaluation Programme Manager (Qualitative), Wessex Academic Health Science Network, Dr Kate Lippiett, Senior Research Fellow, Wessex Cancer Alliance, Prof Diana Eccles, Dean of Medicine, Professor of Cancer Genetics, Faculty of Medicine, University Hospital Southampton, Prof Claire Foster, Professor of Psychosocial Oncology, University of Southampton, Mrs Lesley Turner, Patient and Public Involvement contributor, Ms Kelly Kohut, Consultant Genetic Counsellor, St George’s University Hospitals NHS Foundation Trust Start date: 1 May 2022 End date: 1 May 2024 Background The demand for genetic testing for inherited cancer susceptibility is rising and services are increasingly being provided in mainstream care. In Wessex last year, more than 180 genetic tests were offered to cancer patients in mainstream care, and this will increase in 2022 as more genetic services become mainstreamed and eligibility criteria are expanded. This means that genetic testing is offered by clinicians such as oncologists, surgeons and cancer nurse specialists rather than Clinical Genetic services. It is part of a move to routinely offer genetic testing to all cancer patients where there may be clinical benefit. The results of genetic testing can improve health outcomes by informing optimal treatment pathways and facilitating cancer prevention or early detection in family members. However, deciding whether to have genetic testing is a complex, personal decision with potentially life-changing implications for the patient and family. Many people with cancer are faced with this decision shortly after diagnosis, at an already stressful time. Without the support of specialist genetic counsellors to discuss the medical, psychological and social consequences of genetic testing, it is essential that these patients are given accessible and appropriate support as a complement to clinical conversations. Mainstream clinicians feel they lack the necessary skills and time to support patients in this complex decision process. Web-based decision aids could offer an effective solution, giving patients the flexibility to reflect on and discuss information about genetic testing in their own time, in light of their own personal values. Breast Cancer Choices is one such web-based decision aid which was developed through a two-year research project funded by Breast Cancer Now involving extensive patient input and a review of evidence. By evaluating the implementation of Breast Cancer Choices in mainstream services, we would not only provide improved support to breast cancer patients currently undergoing this difficult process, but also identify wider-reaching implications regarding how best to support patients with other cancers in the national move towards genetic testing. As 1 in 2 people in the UK are expected to develop cancer in their lifetime, with 5-10% of these cancers estimated to be due to inherited predisposition, a clear implementation strategy for mainstream genetic testing is essential. Overall, the project aims to evaluate the impact of Breast Cancer Choices on patient’s decision making and clinician experiences in mainstream care, and to understand how web-based decision aids can be effectively implemented across mainstream cancer care.

5a0c9214-8a00-419e-80b5-dd5d80c94fdf ADOPTED PROJECT: Magnet4Europe: Improving mental health and wellbeing in the health care workplace Joint Lead: Professor Peter Griffiths and Professor Jane Ball Partners: University of Southampton, Katholieke Universiteit Leuven (KUL), Belgium Start date – Jan 2020 End date – Dec 2023 Lay Summary The pervasiveness and growing levels with which mental health morbidity is reported by healthcare professionals is a matter of concern. Underlying causes are frequently rooted within the work environment. In the United States, implementing the Magnet© model of organizational work re-design for nurses in hospitals has been associated with improved mental health, reduced burnout and turnover and improved patient outcomes, yet the model has not been implemented at scale in Europe. The aim of the EU-funded Magnet4Europe study is to transfer, modify, scale up, and evaluate the Magnet© model in 60 European hospitals in 6 countries (Belgium, England, Germany, Ireland, Norway, Sweden) between 2020 and 2023. The intervention involves the following: implementing hospital-wide change via a bundle of organizational measures as stipulated in the Magnet© manual, facilitated by one-to-one twinning with 60 Magnet© recognized U.S. hospitals with experience in implementing the Magnet© model, a European learning collaborative for hospital managers, and a critical mass of hospitals promoting innovation to attract public interest and foster replication. Magnet4Europe uses a usual-practice wait-list cluster randomized trial (RCT) to determine the effect and costs of Magnet© hospital organizational redesign on nurse and physician health outcomes and wellbeing, with burnout as the primary outcome, using validated instruments. Secondary outcome variables include staff well-being and turnover. In addition, the implementation of the intervention is evaluated using a nested mixed-methods process evaluation, based on focus groups and individual interviews with a selection of hospitals in the participating countries. Analyses will be based on quantitative (RCT) and qualitative methods (process evaluation) and a triangulation of the findings. Dissemination of the results are planned for different audiences, including clinicians, hospital managers, policymakers and the wider public. NB: The term ‘Physician’ is used for consistency across the EU countries in the study Consortium. In the UK context the staff group referred to equates to Medical Staff -Medics Intervention Hospital Magnet® is a trademark of ANCC registered in the United States of America and other jurisdictions and is being used under license from ANCC. All rights are reserved by ANCC. ANCC’s consent to the use of the Intervention Hospital Magnet® mark shall not be construed as ANCC sponsoring, participating, or endorsing the Magnet4Europe intervention. ©American Nurses Credentialing Center. Reproduced under license from the American Nurses Credentialing Center. All rights reserved. Publications Laying the foundations for implementing Magnet principles in hospitals in Europe: A qualitative analysis - ScienceDirect

402a4c2a-6e60-4ba0-ab22-b08ca49f80a9 Deprescribing and Optimisation of Medicines IN Older people with Heart Failure and Frailty (DOMINO-HFF) Chief Investigator: Dr Eloise Radcliffe, Senior Research Fellow School of Primary Care, Population Sciences and Medical Education, Faculty of Medicine, University of Southampton Team: Dr Kinda Ibrahim, Associate Professor, School of Primary Care, Population Sciences and Medical Education, Faculty of Medicine, University of Southampton Dr Sara Mckelvie, Clinical lecturer, School of Primary Care, Population Sciences and Medical Education, Faculty of Medicine, University of Southampton. Dr Stephen Lim, Principal Clinical Research Fellow, Consultant Geriatrician, Medicine for Older People, University Hospital Southampton, Southampton General Hospital. Dr Chris Young, Consultant Geriatrician, Medicine for Older People, University Hospital Southampton, Southampton General Hospital. Dr Nina Fudge, Lecturer, Centre for Primary Care, Wolfson Institute of Population Health, Queen Mary University of London. Dr James Sheppard, Associate Professor, Nuffield Dept of Primary Care Health Sciences, Medical Sciences Division, University of Oxford. Mrs Clare Howard, Clinical Lead for Medicines Optimisation, Health Innovation Wessex. Prof Simon Fraser, Professor of Public Health, School of Primary Care, Population Sciences and Medical Education,Faculty of Medicine, University of Southampton. Dr Peter Cowburn, Consultant Cardiologist, University Hospital Southampton, Southampton, General Hospital. Ms Rajneesh Kaur, Patient and carer representative . Partners: University Hospital Southampton NHS Foundation Trust, University of Southampton, Health Innovation Wessex, Queen Mary University of London, University of Oxford. Start: 1 October 2024 End: 31 March 2026 Background Heart failure ( HF) is a long-term disease with symptoms including breathlessness, tiredness and leg swelling. HF is more likely to affect older people and is the leading cause for hospital admission in the UK for those aged over 65 years. Most people with HF have other health conditions therefore taking multiple medication is common. Guidelines for doctors to treat HF recommending multiple medications to help improve symptoms and help people live longer, have led to concerns about further increases in numbers of medication for patients. The application of these guidelines in older adults has had the unintended problem of more complex medication regimes, and possible impacts on physical ability and quality of life. More generally, taking multiple medication can increase risk of side-effects, hospital admission and death for older people. The research studies used to decide guidelines for doctors to treat HF, may underestimate the risks of taking multiple medicines as they do not include populations most vulnerable to potential harms such as older adults and those with frailty. This leads to uncertainty about the long-term benefits and risks of HF medications in the very old and frail populations who are, nonetheless, still treated based on the guidelines. Prescribing should ideally be tailored to each patient’s health condition and their preferences. These factors will change over time, supporting the need for regular medication reviews, and where appropriate, the need for reducing, stopping, or switching drugs in order to improve outcomes. However, this may be challenging due to the lack of research studies, as patients and multiple health care professionals involved in caring for older patients with HF, may experience uncertainty and have differing approaches to the application of the guidelines. Aim To examine research studies on prescribing and deprescribing of HF medication in older people, including those living with frailty. This will inform current guidelines for doctors to treat HF. It will also identify gaps in the research on this vulnerable group commonly prescribed HF medication, but at the greatest risk of experiencing harms linked with taking multiple medications. Design and methods Two literature searches will be carried out, guided by an information specialist librarian, following the established guidelines. Patient, public and community involvement This study has patient and public involvement (PPI) throughout. We will have PPI group of older people and carers living with HF, chaired by our PPI lead who is also a research team member and has contributed to study development. The group will contribute to the interpretation andcommunication of findings on a wider scale. Dissemination Findings will be promoted to the wider research and local clinical community through ARC Wessex networks and our links with Health Innovation Wessex , and in journal publications and conference presentations. We will also promote findings through the links that we will make with local and national charities such as Age UK Southampton, Wessex Heartbeat and the British Heart Foundation.

532de301-847c-4966-bc5a-4870a7af237f COMPLETED: COVID-19 Emergency Department Project NIHR ARC Wessex is supporting this research Summary The COVID-19 pandemic created an unprecedented demand for acute care services. Hospitals faced the challenge of needing to rapidly restructure care pathways and resourcing priorities to maximise survival rates for critically ill patients. University Hospital Southampton (UHS) needed evidence-based tools to support clinical and resource planning decisions in response to the pandemic. COVID-19-ED was able to provide rapid response insight to analytics questions provided by UHS. Who worked on the project? Professor Michael Boniface – University of Southampton Dr Hang Phan – University of Southampton Dr Francis Chmiel – University of Southampton Dr Daniel Burns – University of Southampton Professor Ben MacArthur – University of Southampton Professor Dave Woods – University of Southampton Dr Derek Sandeman – University Hospital Southampton NHS Foundation Trust Dr Thomas Daniels – University Hospital Southampton NHS Foundation Trust Dr Michael Kiuber – University Hospital Southampton NHS Foundation Trust Neil Tape – University Hospital Southampton NHS Foundation Trust Martin Azor – University Hospital Southampton NHS Foundation Trust Dr Matthew Stammers – University of Southampton NHS Foundation Trust What did we find out? We found that computational models of COVID-19 epidemiology could be used to help forecast COVID-19 hospital demand and support the University Hospital Southampton (UHSFT) in their response to the pandemic. We learnt how to deliver a series of models and insight throughout the phases of the pandemic first wave (alert, pre-peak, post-peak, recovery). We learnt to adapt approaches through experimentation and as new information became available to the research team: Initially a 10-day rapid response was required balancing timeliness and precision of answers. Little was known about COVID-19 and a simple approach was developed to forecast the time and size of the first peak. We then extended the model to consider actual hospital data along with the prevalence of infected people in communities and occupancy types such as general or intensive care beds. Finally, the impact of social distancing was incorporated to modify community transmission rates allowing UHS to run what if scenarios considering future assumptions about social distancing policies from the UK government. What difference did it make? COVID-19-ED provided a source of rapid insight response for UHSFT operations teams at a time when they had little information to plan resources. Why was it so important? Community disease prevalence modelling is an important tool to support capacity planning and resource planning for integrated care systems. Vital to provide rapid insights with limited information and changing disease and policy situations. What happened next? The knowledge gained about COVID-19 epidemic modelling led to UK wider leadership of data analytics for Dr Dan Burns in the COVID-19 Regulator Testing Programme Kidd, S.P., Burns, D., Armson, B., Beggs, A.D., Howson, E.L., Williams, A., Snell, G., Wise, E.L., Goring, A., Vincent-Mistiaen, Z. and Grippon, S., 2022. Reverse-transcription loop-mediated isothermal amplification has high accuracy for detecting severe acute respiratory syndrome coronavirus 2 in saliva and nasopharyngeal/oropharyngeal swabs from asymptomatic and symptomatic individuals. The Journal of Molecular Diagnostics, 24(4), pp.320-336. Ptasinska, A., Whalley, C., Bosworth, A., Poxon, C., Bryer, C., Machin, N., Grippon, S., Wise, E.L., Armson, B., Howson, E.L. and Goring, A., 2021. Diagnostic accuracy of loop-mediated isothermal amplification coupled to nanopore sequencing (LamPORE) for the detection of SARS-CoV-2 infection at scale in symptomatic and asymptomatic populations. Clinical microbiology and infection, 27(9), pp.1348-e1. Rapid analytics support to NHSE Chief Scientific Officer’s (NHSE CSO) team including: Statistical validation of the PCR technology for Project Jupiter in Leamington Spa, which now covers 300,000 PCR tests a day of the UK’s Pillar 2 testing infrastructure Development of a calculator tool for TVG which will be used to validate several COVID-19 testing technologies Research design for laboratory validation studies Publications https://doi.org/10.1038/s41598-021-02481-y

55041d82-7430-4dcd-98fd-9bd97e850e1f COMPLETED: PREDICT-NURSE – feasibility: Predicting Patient Acuity/Dependency-Based Workload from Routinely Collected Data to Assist with Nursing Staff Planning – feasibility study Prinicpal Investigator: Christina Saville Team: Paul Meredith, University of Southampton Chiara Dall'Ora, University of Southampton Tom Weeks, Portsmouth Hospitals University NHS Trust Sue Wierzbicki, Portsmouth Hospitals University NHS Trust Peter Griffiths, University of Southampton Ian Dickerson – Patient and Public Involvement Representative Start Date: 1 September 2023 End Date: 30 September 2024 Plain English Summary of Findings Using information about patients already held by hospitals (such as patient demographics, diagnostic information and movements between wards) we estimated the number of nurses needed on the ward each shift. We found that our estimates matched closely with the currently widely-used approach. For that approach, the nurse in charge records the severity of each patient's illness, and how dependent they are on nursing care, every day or shift. In contrast our approach uses a type of regression (a tool for finding patterns in data) to automatically calculate the number of nurses needed. This would potentially save nurses time in assessing patients by using information that is already recorded. What's next? We used data from one hospital so need to find out if results are similar for other hospitals. We also need to find out whether our estimates relate to patient outcomes. We have funding for another 1-year study (PREDICT-NURSE validation and extension) to explore this using existing data from another hospital. We will also investigate whether we can use similar methods in other settings outside acute care, e.g. mental health and community settings. We have also received funding for a 2.5-year study (PREDICT-NURSE) with at least 5 hospital Trusts collecting new data to develop and test algorithms using a wider range of data and outcome measures. This study will be based on user-centred design, with a national survey and workshops to gather nurses’ and other stakeholders’ views. Background Having enough nurses to care for patients on hospital wards is critical for patient safety, but it is difficult to plan for varying numbers of patients and unknown trajectories of deterioration and recovery. Tools for assessing patients’ needs to help with staff planning are an extra nursing task, thus adding further to workload. We do not know whether ward-level demand could be accurately predicted using existing assessments and data that is already recorded electronically. The overall aim of the project was to explore the feasibility of predicting acuity/dependency-based workload measures, as assessed by nurses, from routinely collected information in patients’ electronic health records.

8d1b2f3a-906f-4fe9-8d9a-bf4679c7d6ec COMPLETED: StOP UTI project: Strategies in older people's care settings to prevent infection Background Urinary tract infection is more common in older people living in care homes but can be difficult to recognise. This can lead to overuse of antibiotics and may result in antibiotic-resistant infection and hospital admission. We wanted to find out what can work in care homes to prevent and recognise UTI and what support care home staff need to enable safe care for all residents. What we did We reviewed evidence from a range of sources, including research studies and improvement projects. We also asked care home staff, residents, family carers and healthcare professionals about their experiences. We combined these experiences and ideas with the evidence we found from published literature to develop an understanding of what needs to happen in care homes for older people to prevent and recognise UTI. What we found out What difference will this make? UTI can be prevented by embedding prevention activities in care routines: ensuring residents are hydrated ensuring residents with recurrent UTI are managed actively with preventative treatment avoiding the use of urinary catheters wherever possible Unnecessary antibiotic use can be avoided by: involving the whole care team, resident and family in recognising UTI using active monitoring when there is uncertainty about UTI supporting care staff to develop the skills to accurately recognise UTI using tools that support decision-making and communication across the wider care team Safe care for each resident can be achieved when: care staff receive education that is contextualised to their role and helps them to prioritise and deliver person-centred care care home managers are committed to supporting the delivery of best practice commissioners and regulators promote UTI prevention and recognition as a priority area for care homes Why is this important? Our findings suggest ways that care home providers and policy makers can support the prevention and recognition of UTI in the care of older people living in care homes. A system-wide approach is vital to enable care home managers and their staff to prioritise UTI prevention and recognition as part of person-centred care. At policy level, there is a need to integrate UTI prevention with diagnostic and antimicrobial stewardship and to unify the content of education and decision-support resources so that care staff can see the value of their role in prevention as well as supporting diagnosis and treatment of UTI. What next? Our research is the start of a process of understanding what works in care home settings and will identify where further research is needed. A report, summary and articles provide practical examples and recommendations relevant to care home staff, care home managers, researchers, educators, carers and relatives for use to improve the prevention and recognition of UTI in older people’s long-term care and to plan further research to investigate them. We are turning our findings into a range of different resources and digital communications, with input from experts who support the adoption and spread of innovation, for sharing via care home networks and associations. Publications Realist synthesis protocol for understanding which strategies are effective to prevent urinary tract infection in older people in care homes Preventing urinary tract infection in older people living in care homes: the ‘StOP UTI’ realist synthesis | BMJ Quality & Safety Strategies for older people living in care homes to prevent urinary tract infection: the StOP UTI realist synthesis | NIHR Journals Library Link to University of Southampton site Research team: • Dr Jacqui Prieto, Joint Chief Investigator, University of Southampton • Professor Heather Loveday, Joint Chief Investigator, University of West London • Professor Jennie Wilson, Co-investigator, University of West London • Mrs Alison Tingle, Co-investigator, University of West London • Mrs Emily Cooper, Co-investigator, UK Health Security Agency • Dr Melanie Handley, Co-investigator, University of Hertfordshire • Professor Jo Rycroft-Malone, Co-investigator, University of Lancaster • Dr Lynne Williams, Co-investigator, Bangor University • Mrs Jennifer Bostock, Co-investigator, Patient and public involvement • Lois Woods, Information Specialist, University of Southampton • Simon Briscoe, Information Specialist, University of Exeter • Jemima Kakpa, Research assistant, University of Southampton • Christine Logan, Administrative assistant, University of West London Project Advisory Group: • Jennifer Bostock (Chair) • Professor Lona Mody • Mr Mark Stott • Dr Leah Jones • Mrs Susan Bennett • Mr James McMahon • Mrs Annabelle Stigwood • Mrs Anita Astles

9ae71e9b-aaf2-477f-a174-17b115a2513a COMPLETED ADOPTED PROJECT: Neuro LTC: Assessing Baseline Factors, Critical Events and Fatigue in Long Term Neurological Conditions Principal Investigator: Dr Chris Kipps, Neurologist and Hon Senior Lecturer, University of Southampton Team Members: Dr Helen Roberts Veena Agarwal Dr John Spreadbury Dr Emma Stack Dr Sarah Fearn Prof. Ann Ashburn Start Date: 23/08/17 End Date: 31/12/22 Project Funder: University Hospital Southampton NHS Foundation Trust Lay Summary Many neurological conditions have a long-term impact on quality of life with varying requirements for intervention and care over time. This has the potential to create a mismatch between the needs of patients at particular stages in their illness, and the skill levels of clinicians and available resources required to assist them appropriately. This project aims to identify the factors that influence everyday care requirements (baseline factors) and to identify the critical events that have the potential to lead to an increase in care requirements. In many neurological conditions, there may also be ‘hidden’, less evident or more subjectively perceived factors that influence care requirements, of which fatigue may be amongst the most common. Thus, this project also includes research into the prevalence and effects of fatigue in neurological conditions. By identifying and better understanding baseline factors, critical events and the features of fatigue in long term neurological conditions, this project will help to enable future research to stratify long-term neurological conditions by the degree of complexity and individual burden and match service users more effectively to appropriate clinical and social care resources. Method The research will focus on the following five neurological conditions: epilepsy, Huntington's disease, motor neurone disease, multiple sclerosis, and Parkinson's disease. The study will involve the use of mixed methods. We will use surveys and focus groups with service users (patients and caregivers) to identify the factors that help to maintain an individual’s optimal level of living with the neurological condition (baseline factors), the critical events that can cause a change in care requirements in each of the five neurological conditions, and the impact of fatigue. What did we learn? 1. What factors affect the care that people living with a neurological condition require? We found that mobility was the most important factor for assessing care needs from the patient perspective. This was followed by dexterity, eating and drinking, speech and communication, cognitive impairment and mental health. This order of relative importance was found to be constant by age, disease progression, gender, living alone, or presence of co-morbidities. However, younger patients, more progressed patients, females, those living alone and those with co-morbidities tended to produce higher average scores of importance, meaning they felt their symptoms in these areas had a higher impact on their care needs. We asked participants what helped them to manage their condition and live well. The most important factors were: Social support, exercise, lifestyle factors and supportive equipment. Less recognised factors such as access to healthcare professionals, the patient’s mentality and diet were also noted. We found that recently diagnosed patients cited ‘employment’ and ‘feeling informed’ more frequently, whilst less recently diagnosed patients mentioned ‘having a carer’ and ‘getting out of the house’ more frequently. 2. What events lead to an unplanned GP or hospital visit for people living with a neurological condition? We found that there are specific events that are likely to lead to an unplanned GP or hospital visit for people with neurological conditions. In addition to well-recognised causes of crisis such as falls, trigger events less widely associated with crisis were identified, including difficulties with activities of daily living and carer absence. The less-recognised trigger events tended to be managed more frequently in the community. Many of these community-based crises had a greater impact on care needs than the better-known causes of crisis that more frequently required hospital care. Patient and carer responses indicated a good general knowledge of potential crisis triggers. Patients were more aware of mental health issues, and carers were more aware of cognitive impairment and issues with medications. 3. What is the frequency and impact of fatigue for people living with neurological conditions? We found that the prevalence of clinically significant fatigue across five neurological conditions (Parkinson’s, MS, epilepsy, MND and Huntington’s disease) was 51%. The highest prevalence of fatigue was amongst people with MS and MND, and lowest was amongst people with epilepsy. More than a third of participants reported that fatigue frequently impacted their social life and ability to concentrate. Factors associated with clinically significant fatigue were male gender, age, frequency of fatigue greater than twice a week and fatigue often having a detrimental effect on social life. What difference can this new knowledge make? Understanding the factors that affect the care needs of people living with neurological conditions can help to ensure care resources are targeted at those most at risk of high care needs. Understanding that younger patients, more progressed patients, females, those living alone and those with co-morbidities generally considered their symptoms to have a higher impact on their care needs, can allow us to target these patients with relevant support and interventions. Identifying the most important factors for people with neurological conditions to self-manage their conditions and live well can enable us to share this information more widely and promote self-management tools and techniques amongst this population. By increasing understanding of events that lead to a GP or hospital visit, we can better inform strategies to prevent them. Similarly, by identifying under-recognised crisis triggers we can build a better understanding of ‘risk factors’ for an unplanned GP visit or hospital admission. Identifying that Patients were more aware of mental health issues, and carers were more aware of cognitive impairment and issues with medications means that we can ensure healthcare professionals are asking the right questions to the right person. We also noted some differences in how patients and clinicians describe the events that precede a GP or hospital visit. This can help to ensure healthcare professionals are using the right language when assessing the risk of individual patients. By increasing understanding of events that lead to a GP or hospital visit, we can better inform strategies to prevent them. Similarly, by identifying under-recognised crisis triggers we can build a better understanding of ‘risk factors’ for an unplanned GP visit or hospital admission. Identifying that patients were more aware of mental health issues, and carers were more aware of cognitive impairment and issues with medications means that we can ensure healthcare professionals are asking the right questions to the right person. We also noted some differences in how patients and clinicians describe the events that precede a GP or hospital visit. This can help to ensure healthcare professionals are using the right language when assessing the risk of individual patients. Why is this important? The number of people with a neurological condition is rising, with around 17 million cases in the UK. Approximately 4% of NHS funding goes to neurology care. People with a neurological condition are more at risk of unplanned hospital visits and admissions than many other groups. Identifying factors that promote self-management and well-being could improve patient diagnosis and quality of life, reducing care requirements from the NHS. Reducing unplanned GP and hospital visits could improve patient quality of life and reduce resources spent by the NHS. Identifying the frequency and impact of fatigue and ways to manage it could improve patient and reduce resources spent by the NHS. What Next? We have already taken some of the findings from this study to: -Publish academic publications -Present at medical conferences -Present to groups of people with neurological conditions -Present to national support organisations -Create an impact inventory for neurological pathways -Create questionnaires that aim to identify those most at risk of an unplanned GP or hospital visit (implemented through My Medical Record) We are continuing to analyse the data and disseminate findings to a wide audience. Publications The Causes and Impact of Crisis for People with Parkinson’s Disease: A Patient and Carer Perspective - Sarah Fearn, Sandra Bartolomeu Pires, Veena Agarwal, Helen C. Roberts, John Spreadbury, Christopher Kipps, 2021

26c4cdf6-472a-4d3e-94e8-fa2c11941202 COMPLETED: Neuro Digital: From Attitudes to Strategies Principal Investigator: Professor Chris Kipps Team members: Dr Sarah Fearn, Dr John Spreadbury, Dr Rachel Chappell, Dr Corine Driessens Project Partners: University Hospital Southampton NHS Foundation Trust, University of Southampton Starts: 01 October 2021 Ends: 30 September 2023 Background The COVID-19 pandemic has changed the way neurological care is delivered to involve greater use of digital technology such as videocalls, smartphone apps or online platforms. University Hospital Southampton (UHS) has been developing its own electronic personal health record and self-management platform called My Medical Record. This online care platform offers patients more control over their healthcare by allowing them to: access their clinical letters and appointments in one place message their clinical teams for advice read relevant information on their condition monitor and share outcomes. Data from the platform, however, indicates differences in uptake and use amongst different groups of patients and healthcare professionals. Existing research also tell us that there are still important issues to understand around the uptake and use of digital technology in neurological care and long-term conditions more generally. Aims and Methodology The main aim of the research is to understand how to optimise the use of digital health technology in neurological conditions ( multiple sclerosis, Parkinson’s disease or Atypical Parkinsonian Syndrome (APS), headache, epilepsy, motor neurone disease or other neuromuscular disorder, Huntington’s disease, atypical or early onset dementia ). This will include how to optimise the use of My Medical Record for patients at UHS. The research will involve three interrelated pieces of work or ‘work packages’: Work Package 1 will use interviews and focus groups with neurological patients, carers, and healthcare professionals to investigate attitudes toward digital health technology and My Medical Record. Work Package 2 will use surveys with neurological patients to investigate relationships between personal and clinical characteristics and how people use digital health and My Medical Record. Work Package 3 will use the findings from Work Package 1 and 2 to produce some strategies to support people with neurological conditions to use digital health and My Medical Record. The strategies will be produced together with patient, carer, and healthcare professional groups in co-production workshops. Outcomes The NHS has highlighted the greater use of digital health technology as a way to improve the delivery of care over the next 10 years. The findings from the research will help us to better understand how to promote, optimise and support the use of digital health for people with neurological conditions, including the use of My Medical Record. Taking Part If you would like more information about the study or are interested in taking part, please contact Dr Sarah Fearn via email at S.Fearn@soton.ac.uk or Dr John Spreadbury on 07876818404 or jhs101@soton.ac.uk . What did we find out? With regards to personal characteristics affecting use: We found that older age, lower education, lower income, lower literacy and lower patient activation* were all associated with lower digital health technology uptake and use and more negative views. * Patient activation is a person's level of knowledge, skills and confidence to manage their condition(s) We found that gender and health status were not associated with uptake, use* or views. * Exception of health status and direct contact with healthcare team when participant has a specific issue Whilst we found that symptoms associated with having a neurological condition impacted the use of digital healthcare, we found that people with a neurological condition had access to digital healthcare (e.g. the tech / internet connection etc) comparable to the general population. We also held three co-production workshops to identify strategies that could support or promote the use of digital health technology amongst people with neurological condition. • These were the suggested strategies: What difference can this new knowledge make? Understanding the attitudes towards, and use of, digital health technology for people living with neurological conditions, their carers and their HCPs allows us to identify areas where more support might help promote and improve use. Identifying personal and health characteristics associated with more negative views and / or lower rates of use can help us to identify those more likely to need, or benefit from, additional support. Co-designing strategies to help support and promote the use of digital health technology for people living with neurological conditions, their carers and their HCPs, allows us to create support mechanisms that have been co-developed with the users themselves. Why is this important? The number of people with a neurological condition is rising, with around 17 million cases in the UK. Approximately 4% of NHS funding goes to neurology care. The use of digital health technology offers an opportunity The NHS Long Term Plan highlights the use of digital mechanisms as key enablers to improve NHS care delivery over the next 10 years. The use of digital health technology has the potential to help reduce variation or inequality in care, make care more integrated or joined up, identify people at higher risk of poorer outcomes, and promote self-management. It can also support clinicians to be more efficient, freeing up time for the sickest patients. Identifying factors that promote self-management and well-being could improve patient diagnosis and quality of life, reducing care requirements from the NHS. Reducing unplanned GP and hospital visits could improve patient quality of life and reduce resources spent by the NHS. Identifying the frequency and impact of fatigue and ways to manage it could improve patient and reduce resources spent by the NHS. Our findings can help to improve support to people with neurological conditions to use digital health technology. It can do this by: Understanding the benefits and challenges of use Identifying those most likely to need or benefit from additional support Co-developing implementable strategies to support or promote use What Next? We will be using the findings from this study to: -Publish academic publications -Present at medical conferences -Present to groups of people with neurological conditions -Present to national support organisations -Present to ICB (digital transformation work programme); UHS (IT); Neurological Alliance -Inform the Optimising Outpatients project, which aims to create recommendations for the use of remote care in neurology outpatient services. We are continuing to analyse the data and disseminate findings to a wide audience.

b369496b-453f-489e-9d44-7a954ac3f6d7 COMPLETED: Symptoms, Trajectory, Inequalities and Management: Understanding Long-COVID to Address and Transform Existing Integrated Care Pathways (STIMULATE) This project is part of a national consortium Contact: Professor Nisreen Alwan MBE , University of Southampton Currently in England, there are 90 specialist Post Covid services in which assessment and treatment of Long Covid, and other complications of COVID-19, are informed by NICE guidelines and growing expertise in the field. However, there is evidence that access to such clinics and related care pathways, the nature of those pathways, and patient experience, varies. Research is required to inform diagnosis, care, public health strategies, policy planning, resource allocation and budgeting. It is likewise essential to define the usual care pathway in Post Covid services, and to understand patient presentation, and the effectiveness and cost of care. The STIMULATE-ICP consortium includes: University College London Hospitals NHS Trust, University College London, University of Central Lancashire, LongCovidSOS, UK Doctors #Longcovid , Royal College of General Practitioners, University of Liverpool, Liverpool University Hospitals Foundation Trust, Perspectum, Living With, University of Hull, Hull University Teaching Hospitals Trust, University of York, University of Leicester, University of Exeter, University of Southampton, University of Sussex, Alliance Medical, GE Healthcare, Olink, Francis Crick Institute, NIHR Applied Research Collaboration South West Peninsula, NIHR Applied Research Collaboration East Midlands, NIHR Applied Research Collaboration North Thames, NIHR Applied Research Collaboration Yorkshire and Humber, NIHR Applied Research Collaboration North West Coast, British Heart Foundation Data Science Centre, BHF Data Science Centre, Health Data Research UK, Office of National Statistics, Royal Devon and Exeter NHS Trust, as well as NIHR Clinical Research Network support. Plain English Summary of findings: 23 interviews were completed with people with probable Long Covid We found… There was a lack of awareness of Long Covid, its symptoms and the support available for people with Long Covid An assumed lack of awareness of Long Covid within healthcare People with Long Covid symptoms experienced doubt and uncertainty about the cause of their symptoms Experiences of stigma and discrimination were commonly experienced by people with probable Long Covid. This included experiences of age and gender discrimination, experiences of being dismissed, unsympathetic attitudes and social exclusion. People with probable Long Covid reported feeling embarrassment, feeling tainted and/or different to others because of their Long Covid symptoms. In addition, they expected disbelief and/or judgement from others because of Long Covid People with Long Covid were sometimes reluctant to seek care due to worries surrounding possible investigations and medications, or worries about symptoms being wholly attributed to mental health conditions. There were also concerns about burdening the NHS. The nature of Long Covid symptoms made accessing care difficult. Long Covid symptoms can often come and go or fluctuate, and sometimes one symptom may be more prominent than others. This can mean some symptoms can be overlooked by patients and healthcare professionals. Experiences of people with Long Covid are also constitute epistemic injustice, or inequality surrounding creating, interpreting and conveying knowledge. This is due to the lack of awareness and knowledge of Long Covid both in the community and within healthcare. What we did Research findings from this study and the NIHR funded HICOVE study have been translated into an easily-usable webtool. This tool aims to encourage people with probable Long Covid who have not yet sought help and support from the NHS or other services to do so. It covers topics of self-doubt, stigma and effects on mental health as well as offering resources, tips, and advice on next steps. This tool is primarily aimed at people who may have Long Covid but are not currently accessing care but may also be helpful to those who are. It is also aimed at healthcare professionals, social prescribers, as well as community organisations to raise awareness about the difficulties and stigma people, particularly those from disadvantaged backgrounds, may face when considering reaching out for a consultation or community support. The webtool is available here: Supporting Long Covid Care ( long-covid-care.org.uk ) Where next? We are working on disseminating the Supporting Long Covid Care webtool as widely as possible. We will create an offline version of the tool so this is accessible to people who are not ‘online’. We will also include translations of this into community languages. This will be available to download from the website and from community organisations. We are also looking at ways to evaluate the webtool. See our news article