ARC Wessex is part of the National Institute for Health and Care Research. We conduct research together with universities, health and care services, the NHS, charities, people and patients to improve the lives of people in our community. ARC Wessex 2019-2026 Two ARC leaders appointed Senior Investigators Helping older people get the right medicine Future researchers mark milestone Celebrating the impact of Dementia Fellowships - DEM-COMM Moving Beyond 12 Hour Shifts: How Evidence is Powering Change Have you forgotten me - bridging the gap with dementia diagnosis Read more NIHR ARC Wessex in numbers 200+ Members 100+ Academy members £18M Invested in research 155 Research projects

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9f2dd724-7738-441f-b1ed-16eef04ecccd ENRICHER-C: Involvement in the criminal justice system & the impact on women's health in Dorset & Hampshire – Community comparison Chief Investigator: Emma Plugge, Associate Professor of Public Health, Faculty of Medicine , University of Southampton Team: University of Southampton - Donna Arrondelle, Research Fellow - Kathleen Kendall, Professor of Sociology as Applied to Medicine - Sara Morgan, Lecturer in Public Health - Julie Parkes, Professor Public Health - James Raftery, Professor of Health Technology Assessment EP:IC -Donna Gipson, Director -Lucy Wainwright, Director Prison Reform Trust -Paula Harriott, Head of Involvement Partners : University of Southampton, Dorset Council, Southampton City Council, HM Probation Services, South West, One Small Thing, Prison Reform Trust. Start: 1 October 2024 End: 31 March 2026 Summary This study will look at what happens to women’s health and wellbeing when they are being followed up by probation in the community, serving a ‘community sentence’. We will follow up these women in Dorset and we will compare any changes in wellbeing to changes in women from Hampshire who go to Hope Street on a community sentence. Hope Street is charity-funded residential care for women from Hampshire in contact with the criminal justice system; women live in special accommodation in the community where they are secure and where they are able to access a range of health and social care services. Women in contact with the criminal justice system are often from the poorest communities and they have many different health problems, particularly relating to their mental health. These health problems are often related to their crimes and so by making sure they get the services they need, this will help their health improve and benefit wider society by helping tackle crime. This study will ensure that this unique information is available to those who plan and deliver health services locally. The Southampton research team on this project are carrying out a 5-year evaluation of Hope Street. This means they can use the data that they are collecting as part of this evaluation on the health of women at Hope Street to compare to women from Dorset on community sentences. Researchers will collect information on the health and social care needs of the two groups of women at similar time intervals over a one-year period. They will then compare this information to look for differences. They will interview the women to understand their experiences. They will also look at the cost of their care. The information from the study will help the professionals who plan health and social care services and also those who work in criminal justice settings such as prison or probation. Women with experience of the criminal justice system are part of the nine-person study team. They have helped design the project and will also be important in spreading the word about the study. This will enable us to reach not just academic audiences and policy makers through publishing in journals and presenting at research conferences, but also people with lived experience of probation and imprisonment, and charities that work in this area. Informing a wide range of people will be important in ensuring that the findings from this study are acted on.

e57a4343-00e9-4e08-9056-d084e47c8870 Reframing responsibility through public empowerment: examining environmental cues influencing poor diet Team Dr Nestor Serrano-Fuentes. Senior Research Fellow. School of Health Sciences, University of Southampton. Dr Lyn Ellett. Associate Professor of Clinical Psychology. School of Psychology. University of Southampton. Prof Mari Carmen Portillo. Professor of Long-Term Conditions. School of Health Sciences University of Southampton. Prof Janis Baird. Professor of Public Health and Epidemiology, MRC Lifecourse Epidemiology Centre, University of Southampton. Prof Christina Vogel. Deputy Director, Centre for Food Policy City, University of London. Rachael Eckford, Occupational Therapist Partners Dr Lindsay Welch. Clinical associate professor at the University of Bournemouth. Previous Program Lead Health Inequalities (Health Innovation Wessex) Start: 27th February 2023 End: 30th September 2024 What's the issue? The United Kingdom (UK) consumes the most ultra-processed diet of any country studied in Europe. This scenario indicates that poor diets have become normalised in this country. Consequently, there has been a dramatic increase in diet-related conditions, such as obesity, type 2 diabetes, cardiovascular disease or several types of cancer and the financial costs attached to them. The UK food system is a complex setting for individuals to navigate. Individuals choose which foods to purchase and eat based on many determining factors (both internal and external). Our food environment has changed in the last 50 years and the term ‘obesogenic environment’ is now used to describe some of our food environments. Obesogenic environment meaning a setting which encourages weight gain and discourages weight loss by making unhealthy foods readily available. The environment we live in is a large factor for determining our food choices and poor-quality diets cluster in disadvantaged groups, for example those with low levels of education, low incomes or living in deprived areas. Responsibility for our food choices is culturally framed on the individual What did we find? I n the ARC Wessex project ‘ Reframing responsibility through public empowerment: examining environmental cues influencing poor diets ’ we completed a review of thirty-six articles. Studies exploring public perceptions of poor diets acknowledged personal and broader systems drivers, with individual responsibility predominating across studies. Research analysing media portrayals showed similar patterns of individual responsibility among right-leaning newspapers, which focused on individual lifestyle changes. However, left-wing newspapers highlighted the role of the food industry and the government. Studies analysing government policies identified citizens as the primary agents of change through rational decision-making. Policies and media portrayals provided limited emphasis on these populations, with individual responsibility narratives prevailing. Following this review, we undertook a qualitative study with 15 individuals with obesity/overweight exploring their perceptions of responsibility for poor food diets, with particular attention to how individuals understood and positioned personal and environmental influences on food practices. Our findings highlighted that despite food choice being complex and having many external and internal factors, the public perception has been framed to hold the individual accountable for their food choices. There is consensus that lifestyle factors alone will not fix the problem of obesity and therefore individuals being ultimately responsible for their diets is not the solution. NIHR ARC Wessex supported this project, enhancing opportunities for dissemination, implementation and networking with key local authorities and organisations. We expect our findings to raise awareness of good food choices and the development of tools that could support community care of people with obesity or at high risk of obesity. Further policy work is needed to address the root causes of diet-related health inequalities to implement mandatory regulatory frameworks that set standards for commercial practices. Developing tools to raise awareness of poor diet choices and increase informed decisions Research papers and books Serrano-Fuentes N, Rogers A, Portillo MC. Beyond individual responsibility: Exploring lay understandings of the contribution of environments on personal trajectories of obesity. PLoS One. 2024 May 8;19(5):e0302927. doi: 10.1371/journal.pone.0302927. Serrano-Fuentes N, Ellett L, Vogel C, Baird J, Tavares N, Portillo MC. Mapping how responsibility for poor diets is framed in the United Kingdom: a scoping review. Public Health Nutrition. 2025;28(1):e167. doi:10.1017/S1368980025101079

8d9b12a7-5110-4e7e-9e3b-5c358feb6e17 ADOPTED PROJECT: Multidisciplinary Ecosystem to study Lifecourse Determinants and Prevention of Early-onset Burdensome Multimorbidity (MELD-B) ADOPTED PROJECT: Multidisciplinary Ecosystem to study Lifecourse Determinants and Prevention of Early-onset Burdensome Multimorbidity (MELD-B) https://www.youtube.com/watch?v=vWbZiycdCAE Start date: 1st June 2022 End date: 28th Feb 2025 Contact: s.fraser@soton.ac.uk - link to southampton site listing Lay summary: A growing number of people are living with several long-term health conditions like diabetes, heart disease, depression or dementia. We call this multiple long-term condition multimorbidity (MLTC-M). Many things throughout a person’s life influence the chances of developing health conditions. This includes their biology (e.g. age, ethnicity), things that happen to them (e.g. infections, accidents), behaviours (e.g. smoking, diet) and broader experiences (e.g. the environment people grew up in, their education, work, income). People from more disadvantaged backgrounds and/or certain ethnicities are more likely to develop MLTC-M and to develop it earlier. The impact (or ‘burden’) of MLTC-M, and the order that people develop conditions, also vary. Our research will help understand when MLCT-M becomes ‘burdensome’ and the best opportunities for intervention. Aim To use an Artificial Intelligence (AI) enhanced analysis of birth cohort data and electronic health records to identify lifecourse time points and targets for the prevention of early-onset, burdensome MLTC-M. Plan To achieve this aim, our study is composed of five work packages: Undertake a qualitative evidence synthesis and a consensus study (Delphi) to develop deeper understanding of what ‘burdensomeness’ and ‘complexity’ mean to people living with early-onset (by age 65) MLTC-M, carers and healthcare professionals Develop a safe data environments and readiness for AI analyses across large, representative routine healthcare datasets and birth cohorts. In those safe data environments, using the WP1 burdensomeness/complexity indicators and applying AI methods, identify novel early-onset, burdensome MLTC-M clusters. Also in this work package, we will match individuals in birth cohorts into routine data MLTC-M clusters and then identify determinants of burdensome clusters and model trajectories of long-term conditions (LTCs) and burden accrual. By characterising clusters of early-life (pre-birth to 18 years) risk factors for early-onset, burdensome MLTC-M and sentinel conditions (the first LTC to occur in the lifecourse), we will define population groups in early life at risk of future MLTC-M, identify critical time points and targets for prevention, and model counterfactual prevention scenarios of interventions acting on combined risk factors at key timepoints. Engage key stakeholders to prioritise timepoints and targets to prevent/delay specified sentinel conditions and early-onset, burdensome MLTC-M. Partnering with our PPI Advisory Board, and through further stakeholder engagement, we will co-produce public health implementation recommendations Impact We will work with our stakeholders to use the findings from our research to influence policy and practice, and to co-produce public health advice, on preventing burdensome MLTC-M. https://www.youtube.com/watch?v=UiiRwuACIIc Team: Nisreen A Alwan Associate Professor in Public Health (University of Southampton), Ashley Akbari Senior Research Manager (Swansea University) Mark Ashworth Reader in Primary Care (King’s College London), Ann Berrington Professor of Demography and Social Statistics (University of Southampton), Michael Boniface Professorial Fellow of Information Systems (University of Southampton), Jessica Enright Senior Lecturer in Computing Science (University of Glasgow), Nick Francis Professor of Primary Care Research (University of Southampton), Simon DS Fraser Associate Professor of Public Health (University of Southampton), Martin Gulliford Professor of Public Health (King’s College London), Emilia Holland Specialty Registrar in Public Health/Visiting Academic (University of Southampton), Rebecca Hoyle Professor of Applied Mathematics (University of Southampton), Sara Macdonald Professor of General Practice and Primary Care (University of Glasgow), Frances MairNorie Miller Professor of General Practice (University of Glasgow), Rhiannon Owen Associate Professor, Health Data Science (Swansea University), Shantini Paranjothy Professor and Clinical Chair in Public Health (University of Aberdeen), Ruben Sanchez-Garcia Associate Professor of Pure and Applied Mathematics (University of Southampton), Sebastian Stannard PhD student in Demography and Social Statistics, Becky Wilkinson Consultant in Public Health (Southampton City Council), Zlatko ZlatevSenior Enterprise Fellow, Electronics & Computer Science (University of Southampton) Publications Cohort profile: creation of the SAIL MELD-B e-cohort (SMC) and SAIL MELD-B children and young adult e-cohort (SMYC) to investigate the lived experience of the ‘burdensomeness’ of multimorbidity | BMJ Open The impact of living with multiple long-term conditions (multimorbidity) on everyday life – a qualitative evidence synthesis | BMC Public Health | Full Text Mapping domains of early life determinants of future multimorbidity across three UK longitudinal cohort studies | Scientific Reports Risk factors for ill health: How do we specify what is ‘modifiable’? | PLOS Global Public Health A conceptual framework for characterising lifecourse determinants of multiple long-term condition multimorbidity - Sebastian Stannard, Ann Berrington, Shantini Paranjothy, Rhiannon Owen, Simon Fraser, Rebecca Hoyle, Michael Boniface, Becky Wilkinson, Ashley Akbari, Sophia Batchelor, William Jones, Mark Ashworth, Jack Welch, Frances S Mair, Nisreen A Alwan, 2023

54d3d6a4-2f97-4fa8-8c83-e41613f3b35d Co-POWeR - Consortium on Practices of Wellbeing and Resilience in BAME Families and Communities Principal Investigator: Professor Iyiola Solanke, University of Leeds Team: Professor Maria Stokes, School of Health Sciences, University of Southampton; Professor Sabu Padmadas, School of Economic, Social & Political Sciences, University of Southampton; Professor Monica Lakhanpaul, Institute of Child Health, University College London; Professor Claudia Bernard, Professor of Social Work. Department Social, Therapeutic and Community Studies, Goldsmiths College; Professor Shirin Rai, Politics and International Studies, University of Warwick; Professor Raminder Kaur, School of Global Studies, University of Sussex; Professor Gargi Bhattacharyya, Law and Social Sciences, University of East London; Professor Florence Ayisi, Faculty of Creative Industries, University of South Wales; Professor Anna Gupta, Department of Social Work, Royal Holloway, University of London. Duration: 18 months Summary Two viruses - COVID-19 and discrimination - are currently killing in the UK (Solanke 2020), especially within BAMEFC who are hardest hit. Survivors face ongoing damage to wellbeing and resilience, in terms of physical and mental health as well as social, cultural and economic (non-medical) consequences. Psychosocial (ADCS 2020; The Children's Society 2020)/ physical trauma of those diseased and deceased, disproportionate job-loss (Hu 2020) multigenerational housing, disrupted care chains (Rai 2016) lack of access to culture, education and exercise, poor nutrition, 'over-policing' (BigBrotherWatch 2020) hit BAMEFC severely. Local 'lockdowns' illustrate how easily BAMEFC become subject to stigmatization and discrimination through 'mis-infodemics' (IOM 2020). The impact of these viruses cause long-term poor outcomes. While systemic deficiencies have stimulated BAMEFC agency, producing solidarity under emergency, BAMEFC vulnerability remains, requiring official support. The issues are complex thus we focus on the interlinked and 'intersectional nature of forms of exclusion and disadvantage', operationalised through the idea of a 'cycle of wellbeing and resilience' (CWAR) which recognises how COVID-19 places significant stress upon BAMEFC structures and the impact of COVID-19 and discrimination on different BAMEFC cohorts across the UK, in whose lives existing health inequalities are compounded by a myriad of structural inequalities. Given the prevalence of multi-generational households, BAMEFC are likely to experience these as a complex of jostling over-lapping stressors: over-policed unemployed young adults are more likely to live with keyworkers using public transport to attend jobs in the front line, serving elders as formal/informal carers, neglecting their health thus exacerbating co-morbidities and struggling to feed children who are unable to attend school, resulting in nutritional and digital deprivation. Historical research shows race/class dimensions to national emergencies (e.g. Hurricane Katrina) but most research focuses on the COVID-19 experience of white families/communities. Co-POWeR recommendations will emerge from culturally and racially sensitive social science research on wellbeing and resilience providing context as an essential strand for the success of biomedical and policy interventions (e.g. vaccines, mass testing). We will enhance official decision making through strengthening cultural competence in ongoing responses to COVID-19 thereby maximizing success of national strategy. Evidenced recommendations will enable official mitigation of disproportionate damage to wellbeing and resilience in BAMEFC. Empowerment is a core consortium value. Supporting UKRI goals for an inclusive research culture, we promote co-design and co-production to create a multi-disciplinary BAME research community spanning multi-cultural UK to inform policy. CO-POWeR investigates the synergistic effect on different age groups of challenges including policing, child welfare, caring and physical activity and nutrition. WP1 Emergency Powers investigates these vague powers to understand their impact on practices of wellbeing and resilience across BAMEFC. WP2 Children, Young People and their Families investigates implications for children/young people in BAMEFC who experience COVID-19 negatively due to disproportionate socio-economic and psychosocial impacts on their families and communities. WP3 Care, Caring and Carers investigates the interaction of care, caring and carers within BAMEFC to identify how to increase the wellbeing and resilience of older people, and paid and unpaid carers. WP4 Physical Activity and Nutrition investigates improving resilience and wellbeing by tackling vulnerability to underlying health conditions in BAMEFC. WP5 Empowering BAMEFC through Positive Narratives channels research from WP1-4 to coproduce fiction and non-fiction materials tackling the vulnerability of BAMEFC to 'misinfodemics'.

< Back Our journey in partnership Why Pat and Julia became involved in research Pat Walkington and Julia Burton have been working with researchers from across England as part of a National Priority Research Programme in Ageing, Dementia and Frailty . The programme is a collaboration between ARCs which has been working to improve care for people with dementia and prevent falls in older people. Pat and Julia were supported in their work with researchers by Vikki and Naomi from the University of Exeter as part of ARC South West Peninsula, The overall programme had been initially led by Professor Helen Roberts based in Southampton as part of the ARC Wessex. Five years later, Pat and Julia have reflected on their continuing work: Pat writes: I have been a member of the public and community involvement and engagement panel for the Applied Research Collaboration (ARC) for Greater Manchester for about 12 years and later also became a member of the Health Innovation Greater Manchester panel. I have worked on many different health research projects where I have been able to offer a public/patient perspective. This includes writing plain English summaries for funding bids, sitting on advisory panels, being involved in different workshops and focus groups in my community as well as advising on information leaflets for the public. In November 2020, I was asked to review funding bids for Healthy Ageing, Dementia and Frailty National Priority Areas. Normally my involvement would end here but then in 2022 when a public panel member for the ongoing projects retired, I was invited to join the Programme Management Group overseeing the 3 projects. I was welcomed by the team, helped to be brought quickly up to speed with progress so that I felt comfortable and valued as part of the team. The meetings were well-managed and, like Julia, I felt comfortable about asking questions, asking for clarification if there was something that I didn’t understand, and being able to give a patient/public perspective. I valued the support of Vikki Goodwin and Naomi Morley , the PPI lead members of staff, who offered to meet with Julia and me before and after the Programme Management Group meetings so that we could get to know each other, discuss progress, ask questions and share ideas. This was a positive experience which I have now asked to be introduced to similar work Greater Manchester. I had never heard of a Community of Practice so this was a new and interesting learning experience for me. Like Julia, I found this so valuable in being able to openly discuss project progress, ideas and issues with other PPI teams working on similar projects across the ARCs in different areas of the country. I was disappointed when funding for this ended and our work could not continue. However, now that I know that Communities of Practice can be so valuable I would not hesitate to encourage these to be set up for other research projects. Finally, I am also involved as a PPI member/research partner in one of the 3 projects, the Flexi (Falls Exercise Implementation) Study, in Greater Manchester. This has been another learning experience for me from writing the plain English summary and working on the funding bid, being an equal partner, to now being involved in PPI workshops with members of the public who have taken part in the exercise classes. This morning we were listening to their ideas for public leaflets for the project extension and the positive experiences of how much stronger, fitter and confident that they felt from doing the exercises. They also said how much they had enjoyed the social aspects of exercising together. Pat Walkington public contributor I feel that as a PPI member I have made a difference and I have been able to give something back to the society and health service that has supported me. Julia: I have been involved as a patient/public contributor since the very start and, supported by Vikki Goodwin and Naomi Morley (Exeter), have been enabled to contribute at every stage. I attended all the very regular management team meetings where it was very clear that Helen Roberts valued our input and ensured that the meetings were run in a way that made the content accessible to non-academics like me. Julia Burton public contributor I do have some years of public patient involvement and co-production in research, initially volunteering with the Alzheimer’s Society with lived experience of my mother’s dementia, but terminology, acronyms and on occasions, scientific content can need explanation. It was very interesting to be involved in the programme of three research projects that are aimed at providing interventions for my age group. In my opinion, a very valuable and positive experience was the Community of Practice where the three funded project leaders and PPI leads met outside of the Management Group. Set up by the Management Group and facilitated by Naomi Morley we had regular meetings where issues involved in the progression of the research were discussed together and information, support, contacts and ideas shared. This community became more useful as time went on and resulted in cooperation and problem solving across the ARC s as the three projects were addressing the same NIHR priority. I was disappointed when the funding for this was not extended although Pat Walkington and myself are still involved in the management group. PPI contribution can be seen as a respected part of the entire programme. This was highlighted when Naomi, Pat and I spoke about patient and public involvement across the programme and development of a community of practice at the British Geriatrics Society Autumn Conference in November 2023. We were the only public contributors at the conference and I hope we were pioneers to be followed by others in the future. Previous Next

9786dc43-811c-409a-95aa-666af8766d3d ADOPTED PROJECT: Developing and testing a Patient Report Experience Measure for patients accessing Acute OnCology services: The PREMAC study Principal Investigator : Dr Richard Wagland, Senior Research Fellow, University of Southampton, School of Health Sciences Co-Investigators : Professor Alison Richardson, Professor of Cancer Nursing & End of Life Care and Director of NIHR ARC Wessex, University of Southampton & University Hospital Southampton John Defty, Advanced Clinical Practitioner in Cancer Care, University Hospital Southampton Dr Emma Brown, Medical Oncologist, Acute Oncology Lead. University Hospital Southampton Start date : January 2023 End Date: May 2024 Funder : University Hospitals Southampton (UHS) NHS Foundation Trust R&D Small Grants Award Summary People with cancer often need to access acute oncology services for serious problems caused by their disease or treatment. It is good practice for services to collect information about patients’ experiences of care to understand how they could be improved. The aim of the PREMAC study was to develop a questionnaire for patients who have used acute oncology services to feedback their experiences. The study progressed in three stages. First, a literature review to identify previous research that described elements of care important to people with cancer whilst experiencing a cancer emergency. This was followed by interviews with eight patients who had cancer and eight doctors and nurses from the acute oncology team at Southampton General Hospital to hear their thoughts about the most important elements of care. From these two activities we identified what the questionnaire should aim to measure. In the second stage, a group of patients who had a diagnosis of cancer and used acute oncology services helped the research team draft questions and response options. These questions were then tested with a further four people with cancer, to make sure the questions were easy to understand. Then we made some changes to the questionnaire. The final questionnaire had 37 questions about the quality of care and nine questions about a patients’ background and condition. Questions included aspects such as: quality of information and care they received; the quality of the care environment (whether it was clean and safe, and provided privacy; whether patients’ family and friends were supported and kept informed by staff; whether patients had long waits for care; and the ease of discharge. In the third stage, the questionnaire was sent to patients with cancer to complete one to two weeks after they had used the acute oncology service at Southampton General Hospital. Patients were sent a text to their mobile phone with a link to the questionnaire. 171 patients completed the questionnaire, the majority of whom were female (56.5%). Most participants rated their overall care experience positively, with 82.4% selecting “Very good” and 9.7% selecting “Good.” Only 4.2% of participants rated their care as “Poor” or “Very poor”. Responses to the questionnaire allowed us to test how well each of the questions worked both by themselves and in combination with others in the questionnaire. Responses provided the Trust with important information to help identify areas where care was very good and areas in need of improvement. The next study will test the questionnaire in other Trusts whose acute oncology services might be organised in different ways to the services at Southampton. Background Hospitals have established structured pathways for managing patients with oncological emergencies through acute oncology (AO) services. Whilst some Trusts have developed local questionnaires specific to that service there is no survey available to measure and compare patient experience across NHS trusts. This study will co-design a patient-reported experience measure (PREM), intended to be adaptable for use across different AO service models. Advisory Group Members : Andrew Dossett, Lead Clinical Advanced Clinical Practitioner for Acute Oncology Service, University Hospital Southampton Jane Winter, Macmillan Lead Nurse, Wessex Cancer Alliance Laura White, Head of Involvement & Participation, University Hospital Southampton Katie Hudson, Lead Advanced Clinical Practitioner for Cancer Care Wards, University Hospital Southampton Mrs Susan Restorick-Banks (PPI Representative) Mrs Anne Ongley (PPI Representative) Alison Keen, Head of Cancer Nursing, University Hospital Southampton Philippa Jones, Acute Oncology Nurse Advisor, Board Member of UK Acute Oncology Society. Prof. Ernie Marshall, Medical Oncologist, Wirral University Teaching Hospital (Clatterbridge) NHS England national lead for Acute Oncology

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.

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

93e2e1bd-cd98-479a-93a0-a105e734b0c3 ADOPTED: Exploratory research to examine the health impact of scams and fraud and the current knowledge and systems in the police and partner agencies for targeting and delivering victim support services Lead research ers: Ms Ruth Halkon and Dr Michael Skidmore, The Police Foundation; Professor Mark Button, Director of the Centre for Cybercrime and Economic Crime, University of Portsmouth; Dr Amy Meenaghan, School of Criminology and Criminal Justice, University of Portsmouth. Aims We aim to help the police find those who are most likely to suffer the worst damage to their mental and physical health from falling victim to fraud and make sure they receive the support they need to prevent that damage happening. Background Fraud is the most common and fastest growing crime in England and Wales. Many people do not report fraud and those who do often don’t receive help to reduce the crime's impact on their wellbeing. People affected by fraud can suffer serious physical and mental health problems which can lead to poor physical health, anxiety, depression and suicide. Many factors can shape how victims are affected: stress caused by losing what to them are big sums of money feeling betrayed by someone they thought was their friend or partner blaming themselves feeling friends, family and service providers do not understand them struggling to recover due to existing social or health needs. The police know less about the needs of fraud victims than victims of other crimes like domestic abuse. They are under pressure to improve the service they offer but there are many gaps: Fraud is common crime and can affect victims in many ways, which hinders finding victims who need the most support Those police think are most likely to be harmed, known as ‘vulnerable’, may not suffer the worst effects It is not clear what being 'vulnerable' in a crime context actually means Current systems to address 'vulnerability' mainly focus on cutting crime rather than victim health Research by Which? suggests the impact of fraud on victims' wellbeing amounts to £9.3bn, but we need more data Design and methods Our research will focus on two police forces who work jointly to provide support to victims which is widely seen as the best in the country. The project will focus on their systems, data and services to measure their success and produce a case study for understanding and addressing fraud's health impacts. This will be done via: Reading research papers to find out more about fraud victim impact, vulnerability and victim needs Looking at police and health and welfare data to learn about health impacts of different fraud types Talking to those working for the police, social services, victim support services and key health services Interviews with national subject matter experts Interviews with fraud victims who have been given support after fraud impacted their health to learn how this helped them Patient and public involvement Our overall aim is to involve fraud victims in finding a support framework that works for them Dissemination The report will be launched at an event and published on the Police Foundation website. It will be promoted on our blog, newsletter and social media channels. This fact finding project is a first step to creating a new framework that will be used to find those who need the most help to stop their mental and physical health being badly hit and make sure they are given it. The future project would involve: Organising roundtable events with people Bringing police, health and welfare services together to trial the framework Sharing findings and learning points across the country