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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. What did we find out? •We found that there is very little research on prescribing for older people with heart failure, especially those aged over 75. No studies looked at frailty, which is important for understanding how well treatments work in this group. Very few studies reported on ethnicity, and none considered people’s socio-economic background. Only a small number included information about quality of life, and none were carried out in primary care settings. •Overall, this means there is not enough good evidence to clearly understand the benefits of heart failure treatments for older people. •Some medications may help, particularly a group called SGLT-2 inhibitors (also known as “gliflozins,” such as dapagliflozin), but it is difficult to say how much benefit they provide. In addition, side effects may make these treatments harder to tolerate and could increase the risk of harm for some patients. •We found that for research on stopping or reducing (deprescribing) heart failure medications for older people is also limited. Stopping medicines during a sudden worsening of symptoms may be harmful. However, the available evidence is limited and varies in quality, and it does not properly consider people living with frailty. This highlights an important gap in research and a need for better evidence to guide safe treatment decisions. What have we done with this new knowledge? We have presented findings at the South West Society for Academic Primary Care conference in Oxford, and later in the year at the European Geriatric Medicine Society in France, and are publishing the results of the two systematic reviews in two peer-review widely read journals. We also plan to share the findings with We will share findings with the National Clinical Director for Prescribing in England, Prof. Tony Avery, and the British Geriatric Society (BGS) and present the findings to the South West BGS group. This will ensure the findings reach decision-makers who design and fund future clinical trials. The impact of this research is in contributing to the evidence base and identifying critical gaps in knowledge about how heart failure medications are used in frail older populations. It highlights the underrepresentation of these groups in clinical trials and the limited evidence available to guide deprescribing. This will inform priorities for future research, while also supporting greater awareness among clinicians of the need for personalised, context-specific prescribing and shared decision-making. In the long-term this will contribute to safer prescribing, reduced medication-related harm, improved quality of life, and fewer avoidable hospital admissions. What will we do next? •This is a complex and challenging area of research. Our work has highlighted variation in approaches to prescribing, as well as differences in the challenges faced by healthcare professionals across disciplines and care settings. •It is clear that further high-quality clinical trials are needed to address the important gaps we have identified—particularly the lack of robust evidence on prescribing and deprescribing for older people with heart failure who are living with frailty and multiple long-term conditions. •We will share findings with the National Clinical Director for Prescribing in England, Prof. Tony Avery, and the British Geriatric Society (BGS) and present the findings to the South West BGS group. •We hope our findings will contribute to the recent ongoing public debate on medicines optimisation in frail older people, and will shape and inform future research, supporting the development of clearer, more relevant evidence to guide care for this population.

2eeccab4-e624-4137-9443-6893d09b0589 Change in treatment burden among people with multimorbidity: Protocol of a follow up survey and development of efficient measurement tools for primary care Principal Investigator: Professor Simon Fraser Start Date: 01 October 2020 End Date: 30 September 2024 Background Treatment burden is the effort required of patients to look after their health and the impact this has on their functioning and wellbeing. It is likely treatment burden changes over time as circumstances change for patients and health services. However, there are a lack of population-level studies of treatment burden change and factors associated with this change over time. Furthermore, there are currently no practical screening tools for treatment burden in time-pressured clinical settings or at population level. This is a three-year follow-up study of a cross-sectional survey of 723 people with multimorbidity (defined as three or more long-term conditions; LTCs) registered at GP practices in in Dorset, England. The survey collected information on treatment burden (using the 10-item Multimorbidity Treatment Burden Questionnaire (MTBQ) and a novel single-item screening tool), sociodemographics, medications, LTCs, health literacy and financial resource, as at baseline. Descriptive statistics were used to compare change in treatment burden since the baseline survey in 2019 and associations of treatment burden change were assessed using regression methods. Diagnostic test accuracy metrics were used to evaluate the single-item treatment burden screening tool using the MTBQ as the gold-standard. Routine primary care data (including demographics, medications, LTCs, and healthcare usage data) were extracted from medical records for consenting participants. A forward-stepwise, likelihood-ratio logistic regression model building approach was used in order to assess the utility of routine data metrics in quantifying treatment burden in comparison to self-reported treatment burden using the MTBQ. What we found Out •Among over 800 people aged 55 or older, living with multiple long-term conditions across Dorset, high treatment burden was common (about a fifth of all survey respondents) •Making lifestyle changes and arranging appointments were particular sources of difficulty. Having limited health literacy and experiencing financial difficulty were strongly associated with greater treatment burden. Having more conditions and more prescribed regular medications were also associated. •A single-item treatment burden measure was only moderately good at discriminating between high and non-high burden. •Among 300 of these people who responded to a follow up survey after an average of two and a half years, about a third experienced an increase in treatment burden. This was linked to having more than five long-term conditions and living more than ten minutes from the GP, particularly for people with limited health literacy. •A slightly revised single-item measure still only performed moderately, so it needs more development before being used in general practice. •Using data from participants’ GP records also only performed moderately at reflecting high treatment burden, so further development is needed to use routine health records to identify those at risk of high treatment burden. What difference will this knowledge make? •Given the high prevalence of high treatment burden in people living with multiple long-term conditions, healthcare professionals can legitimately engage with patients on this issue to recognise and seek to minimise avoidable burden. •Health systems (including Integrated Care Boards/Systems) should include consideration of treatment burden in policies and in service design and commissioning, aiming for ‘minimally disruptive medicine’. •Healthcare professionals can anticipate that treatment burden tends to worsen over time in a significant proportion of people living with multiple long-term conditions. •Further development of the short treatment burden questionnaire is underway in a separate NIHR-SPCR-funded study and could be introduced in primary care if it performs better. •Identifying ‘burden’ in data will be investigated in much more detail in a further NIHR-funded study Why is this important for patients, health and care providers and policy makers ? •Factors such as improving access to primary care, particularly for those living further away from services, may reduce treatment burden. •Different modes of health service delivery to specifically meet the needs of those patients more likely to feel overburdened may be needed •Improving health literacy should be an important goal for the health system •Overburdened patients may be more likely to struggle with adherence to self-management •Being overburdened may result in greater use of unscheduled care. This is a priority for the NHS and the link needs further investigation In related work we published a paper on a systematic review of system factors influencing treatment burden, led by a Southampton MSc Public Health student. This has identified important gaps in the evidence map for treatment burden. Providers and policy makers need to recognise the financial and administrative burden for patients and the lack of evidence on this: doi.org Influence of health-system change on treatment burden: a systematic review Background Treatment burden is a patient-centred concept describing the effort required of people to look after their health and the impact this has on their functioning and wellbeing. High treatment burden is more likely for people with multiple long-term conditions (LTCs). Validated treatment burden measures exist, but have not been widely used in practice or as research outcomes. Aim To establish whether changes in organisation and delivery of health systems and services improve aspects contributing to treatment burden for people with multiple LTCs. Design and setting Systematic review of randomised controlled trials (RCTs) investigating the impact of system-level interventions on at least one outcome relevant to previously defined treatment burden domains among adults with ≥2 LTCs. Method The Embase, Ovid MEDLINE, and Web of Science electronic databases were searched for terms related to multimorbidity, system-level change, and treatment burden published between January 2010 and July 2021. Treatment burden domains were derived from validated measures and qualitative literature. Synthesis without meta-analysis (SWiM) methodology was used to synthesise results and study quality was assessed using the Cochrane risk-of-bias (version 2) tool. Results The searches identified 1881 articles, 18 of which met the review inclusion criteria. Outcomes were grouped into seven domains. There was some evidence for the effect of system-level interventions on some domains, but the studies exhibited substantial heterogeneity, limiting the synthesis of results. Some concern over bias gave low confidence in study results. Conclusion System-level interventions may affect some treatment burden domains. However, adoption of a standardised outcome set, incorporating validated treatment burden measures, and the development of standard definitions for care processes in future research would aid study comparability. What are we going to be doing next? Several related studies are already underway: In the NIHR-funded MELD-B study, more in-depth exploration of the experience of living with multiple long-term conditions is underway. This study is exploring in depth the representation of the work/burden in electronic health records. See short animation here: https://www.youtube.com/watch?v=7mZptrMAapY In the NIHR SPCR-funded SPELL study, a Short Treatment Burden Questionnaire is being developed and tested, building on our findings. https://spell.blogs.bristol.ac.uk/ Work has been instigated with the Dorset Public Health team and ICS to explore the value of adding treatment burden concepts to frailty indicators to identify people who might benefit from a ‘carousel clinic’ which supports people with frailty/prefrailty in various ways. This work is ongoing With some additional ARC funding we are working with care coordinators in primary care in Southampton to take forward the learning from this study and the MELD-B study ( https://www.meldbstudy.org.uk/ ) to support and enhance their work with people living with multiple long-term conditions (MLTC): Https://www.arc-wx.nihr.ac.uk/research-areas-list/avoiding-care-escalations-through-targeted-care-coordination-for-people-with-multiple-long-term-conditions-%E2%80%93-a-knowledge-mobilisation-project Publications https://doi.org/10.3399/bjgp.2020.0883 https://doi.org/10.3399/BJGP.2022.0103 Simon Fraser delivered a BJGP podcast on this work which can be found here: https://www.youtube.com/watch?v=MLqrp4HOb7s

dc3e8b34-4159-44f6-a95e-c9d11121781c ADOPTED: Mapping pathways of response for adult and child victim-survivors of domestic abuse in Southampton City Team: Dr Sara Morgan, Associate Professor School of Primary Care, Population Sciences, and Medical Education Faculty of Medicine, University of Southampton Mrs Katerina Porter, Senior Research Assistant, Faculty of Medicine, University of Southampton Dr Eunice Aroyewun, Senior Research Assistant at the School of primary care, population science and medical education, University of Southampton Supervisor: Professor Julie Parkes, School of Primary Care, Population Sciences, and Medical Education Faculty of Medicine, University of Southampton The aim of the evaluation was to map the pathways by which victim-survivors are referred for, and receive, support for domestic abuse situations, from the Council and its partners. There are several processes to which victim-survivors can be referred in Southampton City: PIPPA and HRDA. PIPPA stands for the Prevention, Intervention, & Public Protection Alliance, and is the referral and support process for domestic abuse cases that have been assessed as standard- or medium-risk. PIPPA is a group of services working together to end domestic and sexual violence in Southampton, and comprises the following agencies: STOP Domestic Abuse Yellow Door Southampton City Council’s Independent Domestic Violence Advisor (IDVA) Service Hampton Trust South Hampshire Women’s Refuge No Limits Our evaluation interviewed over 50 people, including professionals working within Southampton’s domestic abuse response, and victim/survivors of domestic abuse. We learned that the ‘high-risk pathway’, where victim/survivors are assessed as being of great risk, is extremely resource-intensive. Southampton City has capacity to hear 20 high-risk cases per week at the twice-weekly Multi-Agency Risk Assessment Conference meetings – but sometimes there are more cases than can be heard in a timely manner. There are things that the professionals and their agencies can do to improve the service for victim/survivors, such as information sharing (particularly around referral thresholds), attending domestic abuse training to develop a greater understanding of the presentations of domestic abuse, and working more closely with partner agencies. The victim/survivors we interviewed placed high value on the one-on-one support they received from key workers, especially Independent Domestic Violence Advocates (IDVAs). The process of having to go to court was seen as a significant stress by victim/survivors; IDVA support through this time is essential. What have we done with our findings? We have provided a final report to Southampton City Council. We also delivered a successful in-person dissemination event on 8 th March 2024 (International Women’s Day), where over 50 professionals from across Southampton came together to learn about our interim results and discuss their experiences delivering support for domestic abuse, with their colleagues from across multiple agencies. We have shared the evaluation findings at regional, national, and international conferences. Having identified the human-resource-heaviness of the high-risk domestic abuse support pathway, we successfully applied twice for funding to explore the potential of Artificial Intelligence (AI) to improve the domestic abuse response. This work is ongoing, and has been very positively received by stakeholders including Southampton City Council, Hampshire & Isle of Wight Constabulary, and Hampshire & Isle of Wight Office of the Police & Crime Commissioner.

e6a8c355-7b95-44d8-b23d-7f8c17a1573a ADOPTED: Consequences, costs and cost-effectiveness of different workforce configurations in English acute hospitals: a longitudinal retrospective study using routinely collected data Principal Investigator: Professor Peter Griffiths Deputy Principal Investigator: Dr Chiara Dall’Ora Professor Jane Ball Co-investigator – nursing workforce, Dr David Culliford Co-investigator - statistics, Dr Jeremy Jones Co-investigator – health economics, Ms Francesca Lambert Co-investigator – patient and public involvement (lay researcher), Dr Paul Meredith Co-investigator – health informatics, Paul Schmidt Co-investigator – clinical medicine, Talia Emmanuel PhD student, Bruna Rubbo Senior Research Assistant / Research Fellow and Christina Saville Research Fellow Partners: Portsmouth Hospitals University NHS Trust, University of Southampton Started: March 2020 Ends: February 2023 Summary of findings Staffing shortages are a major concern for the NHS. A lot of research shows that low nurse staffing in hospital is correlated with worse patient outcomes, including an increased risk of death. However, lots of this research has only looked at hospital average staffing and has not considered other staff, such as doctors and allied health professionals, so it is hard to be sure if improving nurse staffing on wards leads to better outcomes. It is also hard to know the most cost-effective approach to addressing staff shortages. Our study used existing data from national reports and daily staffing data from hospital wards to answer some of the main uncertainties from past research. Using data from national reports, we found low staffing levels from doctors and allied health professionals were linked to increased risk of death. Nurse staffing levels were linked to important aspects of patient experience and staff wellbeing, but to properly understand the effects of nurse staffing we needed to know the staffing patients experience when on hospital wards. Our study included 626,313 patients in four hospitals. We found that when patients spent times on wards with fewer-than-expected registered nurses or nursing assistants, they were more likely to die and their stay in hospital was longer. Low registered nurse staffing was also associated with more readmissions. We looked at the cost of avoiding low staffing and the cost of gaining the equivalent of one year of healthy life. We compared these ‘cost-effectiveness’ estimates for different ways of avoiding low staffing and for different patient groups. Overall, we concluded that a focus on avoiding low registered nurse staffing gave more benefits than using assistants to fill any gaps, and should be the priority, although it is still not clear what the best level of staff is. What have we done with the knowledge? In addition to the full report ( https://doi.org/10.3310/ZBAR9152 ) we have published several peer reviewed papers short briefings, and continue working to disseminate finding, taking opportunities to discuss the implications with policy makers. As a team we are well placed to do this and have recently contributed to consultations on safe staffing legislation in Wales, the NHS workforce strategy in England and the Health Foundations Productivity commission. We have close contacts with NHS England and work with the safe Staffing Faculty, as well as advising policy makers in Ireland, Iceland and the WHO. In addition to engagement with policy makers, our papers have attracted local, National, and International press attention. Dissemination has been supported by interviews given by staff for print, online and broadcast (TV, Radio) media. See for example https://www.altmetric.com/details/166479277/news We worked with Channel 4 News to support their series of specials on nurse staffing shortages ( https://www.channel4.com/news/factcheck-englands-missing-nurses ). Next? Issues related to ‘safe staffing’ in the NHS tend to ‘grab the headlines’ but operationalising findings beyond general acknowledgments in policy can be challenging. This is especially the case in the face of persistent staffing shortages. We are crafting our message to show the benefits from addressing the problem, the likely cost effectiveness of doing so and the absence of evidence for many of the proposed alternatives. We are also increasingly moving towards developing ‘diagnostic tools’ that may be able to prioritize deployment and use scant resources as efficiently as possible while not undermining the core message about the importance of having sufficient well-trained staff to maintain patient safety. Original proposal and details below Aim: This study seeks to understand how variation in the size and make-up of care teams on hospital wards in England influences patient outcomes and the costs of care. Background: Research shows that low registered nurse (RN) staffing levels on hospital wards are linked to undesirable outcomes. These include increased poor experiences for patients, an increased risk of dying and, potentially, other outcomes that are bad for patients and increase the cost of care. These include falls, longer stays and unplanned readmissions. For a long time, studies used hospital level averages rather than looking at what happened to individual patients. This uncertainty makes it hard to understand the likely costs and benefits from investing in staff differently. Developments in information technology now make it possible to link nurse staffing levels experienced by individual patients on every day of their stay, to the outcomes experienced by those patients. Our research group was the first to use these new sources of information to explore how the mix of staff in the nursing team affected outcomes and cost of care. We found that each additional hour of RN time per patient reduced the risk of death and shortened their hospital stay. We found that a small reduction in assistant staff, and a small increase in RNs would improve outcomes with no overall increase in costs. Such findings have implications for how hospitals respond to nurse shortages, but the results come from one hospital and use limited costs and outcomes. It is important to see if the conclusions apply more widely. As RNs are in short supply it is also important to better understand how other staff contribute. Design & methods: Our study is in two parts. Study 1 uses information about ward staff and patients' outcomes drawn from hospital electronic systems. We will use anonymous records gathered from all patients and staff in at least 4 NHS Trusts. Using statistical models, we will estimate the impact of RN and assistant staff levels on outcomes. For example, whether the risk of death is lower when more RNs are working on a ward. We will estimate staff costs and also the costs of events such as unplanned readmission or longer hospital stay. We will estimate the cost per 'quality adjusted life year' associated with changes in nurse staffing. Such measures help policy makers to compare the results of investments in health care and put more value on each year where people are expected to be healthy and independent. Study 2 will analyse national data at a whole hospital level to see how the size of other staff groups (e.g. therapy staff and doctors) might influence outcomes. Patient and Public Involvement: Safe staffing in hospitals is an area of public concern. We developed this proposal with this concern in mind, and shaped it through conversations and consultations with patients and members of the public. A member of the public/carer (who is a co-applicant) will facilitate PPI at all stages of the project, with ongoing engagement and sense checking with patients/public to inform analysis, interpretation and presentation of results. Dissemination: Results will be of interest to a diverse audience. We will present findings to national and international conferences and to policy makers, publish in academic journals and present to stakeholders. We will use professional networks and social media to ensure that outputs reach professional, research and public audiences. Background: The NHS is facing significant challenges in recruiting and retaining staff, particularly registered nurses (RNs). Recruiting unregistered staff is often adopted as a solution to the RN shortage; however, our recent research - the first in England to use longitudinal routinely collected data - found a negative effect of low RN staffing levels on mortality with no evidence that high levels of assistant staff could mitigate the increased risk. Our economic modelling suggested that increases in RN skill mix were potentially cost-effective, but these findings derive from a single NHS hospital Trust with limited cost and outcome data. Aims and objectives: This project aims to estimate the consequences, costs and cost effectiveness of variation in the size and composition of the staff on hospital wards in England. We will build on findings from our previous study, where we looked at staffing on wards in a single hospital. In order to provide estimates that are more likely to apply across the NHS, this study will include at least four hospitals and consider a wider range of outcomes and sources of costs, including death within 30 days of admission, adverse events such as infections, length of hospital stay, readmissions and rates of staff sickness. In order to determine if results are likely to be sensitive to staff groups not on ward rosters we will use national routine data to explore the associations with staffing levels of other groups including medical and therapy staff. Methods: Study 1 will be a retrospective longitudinal observational study with routinely collected data on ward and shift level nurse staffing, and patient outcomes. Data will be derived from the E-Roster systems, used by hospitals to record all planned and worked shifts. We will consider all rostered direct care staff. These data will be linked to patient data derived from the hospital patient administration system (PAS); and other clinical systems and databases of adverse events (e.g. datix). Relationships between RN and assistant staffing levels and outcomes will be explored using survival models incorporating mixed effects. We will use the results of these analyses to model the costs and consequences of different staffing configurations and to estimate the incremental cost-effectiveness associated with change. We will estimate cost per Quality Adjusted Life Year gained or lost (QALY), associated with each staffing configuration using the DANQALE approach. Study 2 will be a panel study using routine national workforce data and outcomes (standardised mortality indicators, patient experience) to consider all staff groups including medical and therapy staff at the hospital level. This study will generate hypotheses about staffing for other groups, confirm the independence (or otherwise) of nurse staffing effects and fill a significant gap in international literature about the association between hospital safety and non-nursing staff levels. Timelines for delivery and impact: our study will be undertaken over 30 months and will provide evidence to inform staffing levels and skill mix planning in the NHS, highlighting potential cost savings, and offering improved patient safety and reduced adverse staff outcomes. To ensure impact, we will work with patients, nurses and key policy makers at all stages; we will publish papers and present to academic and professional conferences, as well as writing lay reports and engaging with traditional and social media

3a061229-d16f-48eb-aa36-30056ba5bad5 INVOLVing pEople with cognitive impaiRment in decisions about their hospital nursing care (INVOLVER): a pilot study Principal Investigator: Professor Jackie Bridges Team members: Professor Jackie Bridges (Professor of Older People's Care, School of Health Sciences, University of Southampton), Dr Jo Hope (Lecturer, School of Health Sciences, University of Southampton), Dr Tula Brannely (University of Bournemouth). Professor Katie Featherstone (University of West London) Ended: 31 December 2022 Partners: University of Southampton, Solent NHS Trust, University of Bournemouth, University of West London Collaborations developed through project: Alex Iles (grant co-applicant/film contributor) and the Treat Me Well Group (Southampton Mencap) (grant development and film contributors) The Grow Project, Southampton (film contributors) Different Strokes (Southampton) (film contributors) Mayes Bahrani (Hampshire and Isle of Wight Healthcare NHS Foundation Trust Patient Experience Group) (grant co-applicant) Catherine Mead (Portsmouth Hospitals NHS Trust, grant collaborator) Rosalynn Austin (Portsmouth Hospitals NHS Trust, grant collaborator) Francesca Lambert (University of Southampton) (grant co-applicant/film project co-applicant) Sofy Bazzini (Digital Learning Team, University of Southampton) (film project co-applicant) Pippa Collins (University of Southampton) (film project co-applicant) Anthony and Caroline Scott-Gall (film contributors) Lay summary We want to help nurses look after their patients in hospital. We want to help them find out how each patient likes to do things like getting clean, going to the toilet, eating and drinking. Some people have to go into hospital to get better. Sometimes, when they are in hospital, the nurses don’t ask them enough about the way they like to do things. For example, if they like a bath or a shower. Or if they need help going to the toilet. Or if they would like to walk about. Or what food or drink they like. Not being asked about these things is not helpful. It might mean that people end up getting sicker and staying in hospital longer. Or they may go home needing more help from their family. People with dementia, learning disabilities or stroke may not be asked these questions about what they like. Sometimes the nurses don’t know how to do this well. Sometimes they know how to do it but can’t do it. The reasons they can’t do it are not well understood. We are a group of people who want to make this better. Some of us work at a university finding things out. Some of us are nurses. We want to include people with dementia, learning disabilities or stroke in our group. This will help us think about how to make things better. We think we can help nurses by using ideas that have worked in other places. When people like us have an idea about how something can be made better, we try the idea out and see if it works. Summary of findings: We have been looking for good examples of how hospitals have changed what they do to make sure people with dementia, people with learning disabilities and stroke survivors are included in making care decisions in hospitals. We looked at all the research in this area and found only 11 studies that did this! Many more studies said they were making care ‘person-centred’ but did not look at how they could directly include people in decisions about their care. We are currently looking in detail at these studies to see what works well, what can go wrong and which bits work best. We will also check if the people who use or might the service were also involved in the design of the changes and testing them. We will report back soon! Our set of short films, Good Care For Me Is… were co-created with people with learning disabilities, stroke survivors and somebody living with Alzheimer’s. We won funding for this from the University of Southampton’s Public Engagement with Research unit (PERu) PER Development Funding Call 2020/21. These have been used in teaching nursing students at the University of Southampton and we are exploring where else they might be used to teach healthcare staff at the University and other good places. They will also be used in research to help design changes to services with patients and staff. Dr Jo Hope won funding from the NIHR’s RfPB (Research for Public Benefit) grant to follow the care of people with learning disabilities in hospitals, to try to understand why care between wards varies so much ( Improving the care people with learning disabilities receive in hospital: an ethnographic study examining the experiences of people with learning disabilities and the organisation and delivery of their care - NIHR Funding and Awards ). Dr Jo Hope has been developing ideas on how to involve people with profound learning disabilities in research and has published about this with her PhD team. What did we achieve? Good Care For Me Is… films are part of the pre-registration nursing curriculum at the University of Southampton, supporting future nurses to understand how they can improve care for people living with dementia, people with learning disabilities and stroke survivors We have found new collaborators in the health service, and people with lived experience who are co-applicants on our successful Stage 2 NIHR Research for Patient Benefit grant called: Improving the care people with learning disabilities receive in hospital: an ethnographic study examining the experiences of people with learning disabilities and the organisation and delivery of their care. Our papers on the inclusion of people with profound learning disabilities in research are challenging research orthodoxy on who can and cannot be directly involved in research We have shared findings from our previous research in Nursing Times, which explores what makes it difficult for patients to ask for help in hospital and why this is more difficult for people with dementia Publications doi.org/10.1111/1467-9566.13435 doi.org/10.3390/socsci11040159 https://onlinelibrary.wiley.com/doi/10.1111/jan.15637 doi.org/10.3390/socsci13010037 What's next? We will be publishing our systematic review into interventions to engage people living with dementia, people with learning disabilities and stroke survivors in nursing care decisions in hospital settings We will explore how our films about care experiences among people living with dementia, people with learning disabilities and stroke survivors might enable more healthcare students and workers to develop their understanding of supporting these patient groups Dr Jo Hope is developing a research programme to explore how hospital care can be improved for people with learning disabilities We will explore and share practical strategies of how people with more profound communication and understanding difficulties can be involved in research and care decisions

Sandra Bartolomeu Pires is doing her PhD and here she updates us in her third yearly update on the slightly eccentric world of studying and managing a young family < Back Truth or Dare? PhD "I'm Lovin' It", Sandra Bartolomeu Pires is doing her PhD and here she updates us in her third yearly update on the slightly eccentric world of studying and managing a young family Oopsy-daisy, sorry guys. I know you've been on the edge of your seat, barely able to focus on your own work, wondering what I have been up to. I'll put you out of your misery then. Ok, so, remember, I moved back to Portugal in the middle of my PhD ( Catch up with it here! ). My smile faded as we hit 45°C and I felt I was being cooked alive. Not easy to deliver level 8 thinking while melting like Olaf in the sun. I'll tell you what, I actually had a great 3rd year on the PhD (read this part while playing “I am on top of the world” , by Imagine Dragons). But today I want to tell you the behind the scenes, because what help am I, if I just show you the “makeup front”... Here is the not-so-sexy-backstage: 1. I got my first-author publication , on an impact factor journal of 3.36. The backstage: this was my 4th submission! 4th! It took me one year from first rejection to finally getting the paper accepted. I am definitely making a mug with a print-screen of my paper. "Bartolomeu Pires et al" aaaah, I like the sound of that… 2. I got another first-author paper accepted the same month I got first published! I went from not having a first-author publication to having two, in a few weeks. The backstage: I worked on this paper for the last 2 years (!!!), in my own time, as a “passion project”. Because of course, I rather write a paper on a Saturday or midnight, than watching "Somebody feed Phil" on Netflix. Of course not! But I was really driven by the accountability towards my patient group and clinical team, that made this work possible (thank you to everyone that supported the REACT-HD group). I tell you what is funny, I got this paper accepted without corrections... No corrections people! This was a service improvement project that I ran and wrote in my own time, and the paper comes back without corrections. Pretty sure those reviewers are angels sent to earth to make doctoral students feel better. 3. I wrote a book chapter for the Handbook Integrated Care right up my alley, focused on the needs of people living with neurological conditions. Backstage: I was pretty much with a month of continuous migraines due to this chapter. Every time I sat to write it my brain was in tears. Creating 10 000 words conscious that I had a PhD waiting to be done added pressure. I also wrote a massive chunk while at the beach. And by "at the beach", I mean I was at home writing while my beautiful sister was taking care of my daughter and entertaining her at the (actual) beach (Thank you, Tânia). I would do it all over again, but it wasn't easy. 4. I got a small grant with the European Huntington’s Disease Network working group (Multidisciplinary Treatment and Care) to run an inspired nominal group technique meeting with experts at the European Huntington Association Conference (and breathe). We worked on standards of care for people living with Huntington’s Disease. I led the meeting in Belgium last October and it was a great feeling to deliver on such a big event. The backstage: I was dying of fear that I would be embarrassed at European level. I travelled 2 days for a 4 hour meeting, nearly lost the train leaving Blankenberge, caught a cold, and was sick with some viral nastiness for the next… 4 months. This embryonic idea will feed into an actual research project, that I am very excited (and equally scared of), and so this under the pump opportunity was incredibly worth it. From left to right, the marvellous Huntington’s Disease Marvel-like team: Ruth Veenhuizen, Dina Sousa, Alexandra Fisher, (little hobbit Me), Annemiek Helmers and Asuncion Martinez Descals. Missing from the picture but equally awesome: Astri Arnesen and so many more members of the working group. I've done more stuff, but I'll stop the humble bragging now. There's something I want my PhD colleagues, particularly the newcomers, to think about. How much you give, and how much you take. See, every single one of these achievements, came with significant hurdles and personal sacrifice. You will be asked so much, constantly, and the more you deliver the more you will be asked to do. So for your own sake, I want you to think of how you will preserve your wellbeing throughout your journey. Here are two strategies that work for me. Don't agree to something right away. Ponder on the possibility. "I'll get back to you on that". "Should we schedule a meeting for next week to discuss that?". "Maybe, let me check my schedule". Never commit straight away. Asses the cost-benefit. Is it worth doing? What's in it for you? Do you need to give your all 100% or maybe 60% will do good enough? Think of how much energy and time you give to a task and make a choice on what to take on. [I had a mentorship session recently, so my mentor’s words are stuck with me (thank you, beautiful mentor).] I want you to have a good experience in your research journey, which, probably and hopefully, will be longer than your PhD. Set the boundaries you want for life, what are you comfortable living with? And make it work for you. I'm not sure I'll manage to write to you again, my scholarship is coming to an end, and I have this disease of wanting to save the world through my research… Impressive that on my 4th year I am still this perky. I blame my supervisors who are so supportive that I believe I can do anything (yes, I have the best supervisors, thank you!) I’m loving it. And somehow, I seem to be hungry at this thought… How about you? Truth or dare? Need me? Find me on socials: Instagram @integrate_hd LinkedIn https://uk.linkedin.com/in/sandra-bartolomeu-pires-841594190 Twitter @BartolomeuPires Email smbp1u20@soton.ac.uk Sandra Sandra Bartolomeu Pires Previous Next

eda5a835-7cd7-4129-9513-a5eae9f5b7ce ADOPTED: An observational longitudinal cohort study to investigate Cortical Disarray Measurement in Mild Cognitive Impairment and Alzheimer’s disease (CONGA) Principal Investigator: Professor Chris Kipps Team: Steven Chance, Oxford Brain Diagnostics Ltd Robyn Davies, Cardiff and Vale University LHB Gail Hayward, University of Oxford, Nuffield Department of Primary Care Health Sciences, Margaret Glogowska, University of Oxford, Nuffield Department of Primary Care Health Sciences Jane Wolstenholme, University of Oxford, Health Economics Research Centre Filipa Landeiro, University of Oxford, Health Economics Research Centre Angus Prosser, University of Southampton Main Funding: NIHR i4i Starts: 6 March 2022 Ends: 31 June 2025 Summary Dementia is an umbrella term for a group of neurodegenerative diseases that cause cognitive and/or behavioural impairment that affect an individual’s function and daily living. Alzheimer’s disease (AD) is the most common dementia subtype, accounting for 60-70% of cases, followed by vascular dementia, mixed dementia, dementia with Lewy bodies, and frontotemporal dementia. Timely and accurate diagnosis of dementia is essential for appropriate care planning and signposting to sources of support. Early diagnosis and implementation of carer and patient interventions has been shown to improve patient and carer outcomes including health-related quality of life (HR-QoL) and delayed patient institutionalisation. With the promise of new therapeutic targets that may slow the progression of Alzheimer’s disease with early and targeted intervention, accurate and timely diagnosis is critical. Diagnosis is however challenging. Difficult cases can leave patients with uncertain diagnoses for long periods of time, where a “wait and see” approach is often employed when diagnostic tests are inconclusive. This can cause significant stress to both individuals living with cognitive impairment or dementia and their families. Definite dementia subtype diagnosis can currently only be obtained through post-mortem histopathological confirmation. Participants will be recruited through secondary and tertiary centres where diagnostic investigation or patient monitoring is underway. Participants will be followed for two years at 6 monthly intervals to determine change on standard cognitive and functional measures and collection of participant and companion reported health and social care events, with MRI examination at baseline and 24 months.

535f16ee-e98a-4782-81fa-97a73abd8468 ADOPTED: Improving patient safety, workforce wellbeing and NHS efficiency through improved shift patterns for nursing staff: study protocol Principal Investigator: Dr Chiara Dall'Ora, University of Southampton Project partners: University of Southampton; Nottingham University Hospitals NHS Trust; Herefordshire and Worcestershire Health and Care NHS Trust; Northumbria Healthcare NHS Foundation Trust; Sheffield Children’s NHS Foundation Trust; Southern Health NHS Foundation Trust; Nursing and Midwifery Council Team: Dr Hannah R. Barker (Qualitative lead), Prof Peter Griffiths (Senior Mentor), Dr Chiara Dall’Ora (Project lead) Public & staff involvement: Nursing staff, ward managers and matrons from 5 Trusts helped shape the DCE survey and future research priorities Funded : Academy of Medical Sciences Springboard grant Started: 1/9/23 Ended: 31/8/24 Lay summary What is the problem? If the COVID-19 pandemic has taught us something, it is how important the wellbeing of the health workforce is. Nurses form a big part of the health workforce, yet many leave their job because of poor working conditions. In recent years, hospital managers introduced long shifts for nurses, hoping nurses would be happier with their work-life balance. However, our research found that long shifts have negative effects for nurses and patients. We still do not know what good shift patterns look like. What we asked: How can shift patterns be designed to better support nurses’ wellbeing and help the NHS retain staff? We conducted interviews with nursing staff, ward managers and NHS directors across five Trusts, and a large UK survey (discrete choice experiment) with 1,449 registered nurses. What we found: Nurses value (1) consistency and predictability in rotas; (2) adequate rest between shifts; and (3) opportunities to enjoy work through meaningful time with patients and teams. Rigid, last‑minute rosters and very long shifts erode wellbeing. From the national survey: Night‑only patterns and having no whole weekends off are the least acceptable rota features and require the largest compensation to tolerate. Predictable schedules and having scope to request shifts are strongly valued. Nine‑to‑ten‑hour shifts are preferred over 12.5‑hour shifts. What this means: Collaborative rostering that balances service needs with personal circumstances can improve satisfaction and reduce turnover. Guaranteeing protected weekends where feasible, improving predictability, and avoiding very long duties are practical levers for better retention and patient care. What we did with the new knowledge: We ran 5 dissemination and co‑design workshops with NHS Trusts (Jan–Feb 2025) to share qualitative findings and plan next steps. Used findings to refine a national discrete choice experiments (DCEs) on rota preferences (n=1,449) and generate policy‑ready benchmarks for rota design and enhancements. Engaged workforce matrons and managers to shape future studies on flexible rostering and shift design. What's next? - Publish the DCE paper. - Produce a policy brief (ongoing with Public Policy | Southampton) - Attract funding to evaluate how flexible rostering can reduce sickness absence, turnover and costs - Co‑design of a shift‑work intervention with staff and managers (Hannah Barker NIHR Development & Skills Enhancement Award) - Support Trusts to pilot more predictable rotas, protected weekends and 9-10‑hour options where feasible. See article: Moving Beyond 12 Hour Shifts: How Evidence is Powering Change

Senior Research Fellow < Back Miguel Garcia-Argibay Senior Research Fellow Healthy Communities Coming soon Previous Next

b45fdd12-d569-4bd5-a0c4-1547cfa6f910 PARTNERS II: Testing implementation and evaluation of a digital tool for multisectoral support and management of people living with Parkinson’s disease and/or arthritis. Chief investigators: Professor Mari Carmen Portillo, Professor of Long Term Conditions, School of Health Sciences, University of Southampton. Dr Dorit Kunkel, Lecturer, University of Southampton and Research Design Service, School of Health Sciences Team: Dr Katherine Bradbury Health Psychologist, Senior Research Fellow NIHR ARC Wessex Digital Health Lead University of Southampton. Dr Lindsay Welch, Associate Professor of Nursing Practice, Bournemouth University & University Hospitals Dorset Sandra Bartolomeu Pires, PHD Researcher, School of Health Sciences, University of Southampton. Professor Christopher Edwards, Consultant Rheumatologist, Honorary Chair of Clinical Rheumatology, Associate Director Southampton NIHR Clinical Research Facility, University Hospital Southampton (NHS) University of Southampton. Dr Lindsey Cherry, Associate Professor (Podiatry Rheumatology), School of Health Sciences, University of Southampton. Francesca White, Senior Strategic lead for Partnerships, Hampshire and Isle of Wight Integrated care board. Dr Hayden Kirk, Clinical Director Adults Southampton, Solent NHS Trust ( Hampshire and Isle of Wight NHS Foundation Trust) Caroline Aylott, Head of Research, Versus Arthritis, Carolyn Fitton, Senior Research Assistant, School of Health Sciences, University of Southampton. Gillian Merritt, Service Improvement Manager, Parkinson’s UK. Peter Rhodes, Senior Programme Manager, Industry & Innovation, Health Innovation Wessex. Partners: University of Southampton, Bournemouth University & University Hospitals Dorset, Hampshire and Isle of Wight NHS Foundation Trust, NIHR Clinical Research Facility, University Hospital Southampton, Hampshire and Isle of Wight Integrated care board, Versus Arthritis, Parkinson’s UK, Health Innovation Wessex. Start: 1 October 2024 End: 30 November 2025 Summary Self-management can help people with long term conditions manage their health better. Existing self-management tools focus on healthcare (medication management, appointments) and fail to understand how people live with and adjust to their long-term conditions. This includes social support (family/friends) and other resources and networks available like the voluntary sector, industry and community groups. We have created an intervention (an action to improve a situation or prevent it getting worse) to support self-management for people with Parkinson’s Disease and/ or Arthritis and their family/carers. This intervention recognises the role of social support, charities and other organisations in adjusting to living with a condition. Based on previous study findings where we looked at the literature and talked to patients and health care professionals, we co-produced a digital tool website/app ready for testing. Aim of the research: To explore the acceptability (ease of use) and how helpful the tool is in supporting self-management by collecting data and by talking to patients and carers who have used it and health care workers. The PARTNERS tool will support professionals and other organisations to connect, share resources and optimise communication and referrals, leading to more personalised and cost-effective use of resources (beyond healthcare) in the community. Design and methods: Mixed methods acceptability and implementation study. The research will take place in community settings in Wessex. We will prioritise disadvantaged groups (those less comfortable using technology and less able to access available resources and support). We will test the PARTNERS tool with patient, carers, health professionals and voluntary organisations (Parkinson’s UK and Versus Arthritis). Testing will help understand how the tool is used and what helps or hinders its success. We will talk to people who used it to identify how useful and helpful it was and how to integrate it with their normal care. The research will support better self-management of Parkinson’s Disease and/or Arthritis, make recommendations for policy development and provide evidence for how to improve NHS services. PPI: We are working with people with Parkinson’s Disease and/or Arthritis and their families/carers. We will work together as equal partners to decide their level of involvement, roles, ways to input and training needs. We will also explore what works best or what we should do differently in their involvement. Dissemination: We will share our learning across the different groups involved. This will include presentations, policy briefings, newsletters and public events.

1c23cf8b-3886-4a98-9ca5-1588bcdda392 ADOPTED PROJECT: Development of a decision aid for offloading device selection for people with diabetic foot ulceratio ADOPTED PROJECT: Development of a decision aid for offloading device selection for people with diabetic foot ulceration Principal Investigator: Dr Lindsey Cherry , Associate Professor University of Southampton Research team: Dr Michael Backhouse, Associate Professor, University of Warwick; Dr Kate Lippiet, University of Southampton & Wessex Cancer Alliance, Dr Surussawadi Bennett – Research Fellow, Ms Joanne Casey – Senior Research Administrator Partners: Great Foundations Charity (Funder) University of Southampton & Hampshire and Isle of Wight Healthcare NHS Foundation Trust, Diabetes UK, University of Warwick, University of Plymouth & Wessex Cancer Alliance So far, we found that people have different priorities when needing to choose between treatment options. There are pros and cons for each treatment. Treatment choice can be summarised into removable (‘ROD’ e.g., a specialist boot) and non-removable (‘NROD’ e.g., a plaster cast) offloading devices. Choosing between ROD and NROD is important to people. Evidence to support one treatment over another differs depending upon the treatment goal. For example, NROD is likely to heal the wound quickly. ROD is likely to be more comfortable and people can still drive. People (staff and patients) are often unclear about what a decision aid is and how it could be used to support discussion about treatment choice – so we made a helpful animation: OFFLOAD: what is shared decision making? https://vimeo.com/1158396239 We talked with patients about their experience of using ROD/NROD and making a treatment choice. We found out what people need that is currently missing in their care. We talked with clinicians about their experience of prescribing ROD/NROD and supporting people to make treatment choices. We found out what the barriers or enablers are to supporting choice in routine practice. We worked with patient and professional advisors and our PPIE partner Debs to create an animation that explains what a decision aid is and how to use it. The animation will be made publicly available on completion of the study. We completed an in-depth review of the literature to identify evidence supporting each treatment option. We used the learning from patient & clinician experience and the literature review to create a decision aid (a written summary of the choice to be made and comparative evidence for each treatment option based upon factors identified as important to people e.g., speed of wound healing, risk of infection or amputation, mobility, ability to drive, comfort etc.). We tested and refined the decision aid in clinical settings. Our next step is to evaluate the difference in health and wellbeing that use of the aid makes. We worked with a design company, our study advisory board and our PPIE partner to create a user-friendly version of the decision aid. This ensures people with differing health literacy have access to decision support. We plan to: Publish our research findings (interviews with patients and clinicians, literature review, development of the DA) Apply for NIHR RfPB funding to evaluate the clinical and cost-effectiveness of using the decision aid in clinical practice Continue working with PPIE and Charity partners to understand the challenges and opportunities to access OFFLOAD devices and enable choice Work with industry partners to explore routes to supporting knowledge mobilisation about offloading decision support and use of the DA in the UK and internationally Work with international partners to share the animation in Canada; to explore French translation and cultural adaptation

Clinical Doctoral Research Fellow and Specialist Research Nurse, Portsmouth < Back How I overcame my fears to win recognition for nurse research Rosalynn Austin Clinical Doctoral Research Fellow and Specialist Research Nurse, Portsmouth For the past 3 years, every year in October, I have a tradition. The call for Early Investigator Awards (EIA) comes out and with the support of my supervisors I submit an abstract. Every year the abstract gets rejected. When I saw the email this year, from the British Society for Heart Failure (BSH), I steeled myself for the traditional annual rejection. The words, “I am delighted to tell you that you have been selected to present at the meeting” jumped off my screen and I double checked to see if it was actually addressed to me. To then learn that my research was the first nurse led research to be shortlisted for this award carried with it a mixture of honour and responsibility. Having attended this conference before I knew my biggest challenge was not the 5-minute presentation, but in explaining burden of treatment to a clinical audience, unfamiliar with this theory. I knew that this was key to them understanding the relevance of my results and increasing the possibility of impacting on their clinical care of heart failure patients. Channelling my inner Florence Nightingale, I wrote and re-wrote my presentation, practicing it multiple times to the cardiology team at Portsmouth Hospitals University NHS Trust. “Never lose an opportunity of urging a practical beginning, however small, for it is wonderful how often in such matters the mustard-seed germinates and roots itself.”― Florence Nightingale Nerves before a presentation are normal for me, but on Thursday Dec 2, 2021 my pre-presentation nerves were on a new level. The knowledge that I was the first nurse to be invited to present for this award category in the BSH, had raised the stakes considerably. I wanted honour and represent so many nurse researchers who inspired and supported my journey as a Nurse Researcher. At the coffee break following my presentation, nurses and doctors come up to me and not just comment on my presentation going well, but on how they found it interesting. Better than that they had more questions about burden of treatment and my research. This continued on social media and even now looking back on Thursday evening I can’t help but smile. I felt then that regardless of the announcement of winner announcement on Friday morning, that I had won. I had represented nurse researchers honourably, becoming a trailblazer, inspiring others and creating clinical curiosity around burden of treatment. The announcement ( https://twitter.com/BSHeartFailure/status/1466720998468820994 ), the next day, that I together with Simon Beggs (Cardiology registrar & Honorary clinical lecturer) and Amrit Lota (Cardiology Specialist Registrar, specialising in heart failure and imaging) were to be joint winners cemented those thoughts. I am grateful to my supervisors who supported me in this journey and especially the participants who gave of their time to inform my research. This win is theirs too. To find out more about the winners follow on twitter: @RosalynnAustin @amritlota *Link to the report of the event including the announcement of the winners of the EIA: https://bjcardio.co.uk/2022/01/freedom-from-failure-the-british-society-of-heart-failure-annual-meeting-highlights/ Previous Next