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62657f5f-1a8d-4fc4-8b32-bd364cb93d3a ADOPTED PROJECT - PREMAC 2 STUDY Development and application of Patient Report Experience Measure for patients accessing ACute oncology services: Aim This study will test a newly designed patient report experience measure (PREM) questionnaire for acute oncology (AO) across three NHS Trusts. Objectives The study will test: i) the acceptability of the PREM instrument to patients; ii) how well the PREM questionnaire performs, its validity and reliability, when completed by patients who have received care from different clinical teams; iii) the capability of the PREM instrument to identify variations of patient experience between participating trusts, and; iv) how easily the PREM questionnaire can be used to collect information across several trusts that might deliver services in different ways. Background People with cancer often need to access AO services for serious problems caused by their disease or treatment. Although trusts are required to obtain feedback from patients who receive AO services, there is currently accepted way of collecting this information. A preceding study, the PREMAC study, designed the new PREM questionnaire that we will test in this subsequent study. Design and Methods The study will include three NHS Trusts, and a sample of at least 100 completed responses will be required for statistical analysis from each site. Patients who have accessed AO services will be sent an electronic link to the questionnaire by text message or email, between one and two weeks following their care. Participants will be eligible if they: have a confirmed diagnosis of cancer; are 18 years old and above; have sought urgent care/advice for problems for cancer or its treatment; have accessed AO service via a triage helpline, a bespoke AO unit or via ED. Only anonymised information will be collected from respondents. Study outputs The main study output will be a validated PREM, which can be used to explore and benchmark the quality of AO services at trusts across England with different service delivery models.

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

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

Dr Naomi Klepacz & Professor Jane Ball (School of Health Sciences, University of Southampton) < Back Addressing underlying workforce challenges is essential to meet the nation’s mental health care needs Mental Health Dr Naomi Klepacz & Professor Jane Ball (School of Health Sciences, University of Southampton) What is it like to be part of the mental health nursing workforce? We argue that it is only by understanding the reality of the job – its highs and its lows – that we will be able to grow the mental health workforce and hold on to experienced nurses needed to deliver care well. Demand for mental health services is at an all-time high, yet many people cannot access vital services and face long waits for treatment ( 1) . Nurses comprise one-in-three of the NHS mental health workforce (2) . They are fundamental to providing mental health services and a positive patient experience. However, mental health nursing vacancies represent a third of all nursing vacancies (3) , and while there has been a welcome increase in the number of mental health nurses in recent years, the rate of increase still falls behind that seen in adult and children’s nursing (2) . There are also significant regional differences in mental health nurse staffing that seem disconnected from the level of demand for services (2) . The bottom line is that both now and, in the future, we need more nurses working in mental health – which means expanding supply and ensuring we have the conditions needed to retain the experienced staff we already have. The NHS Long Term workforce plan proposes an investment in expanding training places by 2028/29, with a promised increase of 38% for mental health nursing (4) . A substantial change, but lower than that promised to other fields of nursing. Research has demonstrated the link between nurse wellbeing and patient experience of care, staff and patient safety, sickness absence, job satisfaction and leads to staff leaving the workforce (5) . Physical or mental health, burnout or exhaustion currently follow retirement as the top reason nurses leave the profession (6) . The 2022 NHS Staff Survey reports that 49% of mental health nurses felt unwell because of work-related stress in the last 12 months, 61% came to work despite not feeling well enough to perform their duties, 45% reported often or always finding their work emotionally exhausting, and 28% experienced physical violence from a patient or service user in the last 12 months. In addition, 70% work additional unpaid hours over and above their contracted hours. Therefore, understanding the working lives and wellbeing of the mental health nursing workforce is critical for patient care quality, patient nurses, and the growing nursing workforce. Change is urgently needed to meet the nation’s demand for mental health care, but change requires commitment, investment, and, above all, an understanding of, and sensitivity to, the underlying issues. NHS England made a commitment to the growth and development of mental health nursing (7) , and recommendations from this report together with those from the Nuffield Trust (2) say a more accurate and realistic image of the mental health nursing role is needed, with clarity on career options, work setting and the range of people mental health nurses care for, to challenge false stereotypes. In our research into the working lives and wellbeing of nurses in mental health, we have spoken to some truly inspirational nurses who describe working as a mental health nurse as “the best job in the world”. While both patients and nurses place value on therapeutic relationships (8) , the importance of these relationships appears to be poorly understood by those who have not been touched by this experience (9) . Yet the absence of such relationships in mental health care can impact both patients (who may feel more disconnected, alone or vulnerable) and nurses - who are less likely to feel job satisfaction or take pride in the care provided ( 8 , 10 ). Unlike other fields of nursing, mental health nurses argue that it is this patient familiarity, the knowledge and experience gained through patient interaction, rather than treatment-focused ‘skills’ that make mental health nurses unique and indispensable while also making the role of mental health nurses challenging to define and difficult to evidence. Nurses don’t just deliver the intervention; they are the intervention. This is why we are undertaking a study (with funding from the NIHR ARC Wessex Mental Health Hub ) to provide insight into the work lives, wellbeing and working context of nurses in mental health services so that action can be taken (through local changes and/or national policy) to enable a better experience of work. When nurses feel good about the work they do and are given what they need, the benefits – to staff, organisations, and patients – are many. As part of this work, a national survey of the mental health nursing workforce is currently underway. This survey is open to nurses on the Nursing and Midwifery Council (NMC Register) providing mental healthcare to any patient group, in any setting, and for any health and social care provider. It is completely anonymous and will take 15-20 minutes to complete. This study is supported by the National Institute for Health and Care Research ARC Wessex. The views expressed in this publication are those of the author(s) and not necessarily those of the National Institute for Health and Care Research or the Department of Health and Social Care. Professor Jane Ball Dr Naomi Klepacz References: 1. Care Quality Commission. Rising demand for mental health care [Internet]. 2022. Available from: https://www.cqc.org.uk/publications/major-reports/soc202021_01d_mh-care-demand 2. Palmer W, Dodsworth E, Rolewicz L. In train? Progress on mental health nurse education [Internet]. Nuffield Trust; 2023 May. Available from: https://www.nuffieldtrust.org.uk/sites/default/files/2023-05/Mental%20Health%20nursing%20update_WEB_FINAL.pdf 3. NHS Digital. NHS Vacancy Statistics England, April 2015 - March 2023, Experimental Statistics [Internet]. 2023. Available from: https://digital.nhs.uk/data-and-information/publications/statistical/nhs-vacancies-survey/april-2015---march-2023-experimental-statistics 4. NHS England. NHS Long Term Workforce Plan [Internet]. 2023 Jun. Available from: https://www.england.nhs.uk/wp-content/uploads/2023/06/nhs-long-term-workforce-plan-v1.2.pdf 5. Maben J, Adams M, Peccei R, Murrells T, Robert G. Patients’ experiences of care and the influence of staff motivation, affect and well-being. NIHR; 6. Nursing & Midwifery Council. 2023 NMC Registere Leavers Survey (Summary Report) [Internet]. Nursing & Midwivery Council; 2023 May [cited 2023 Jul 10] p. 1–36. Available from: https://www.nmc.org.uk/globalassets/sitedocuments/data-reports/may-2023/annual-data-report-leavers-survey-2023.pdf 7. Health Education England. Commitment and Growth: advancing mental health nursing now and for the future [Internet]. Health Education England; 2022 Apr p. 37. Available from: https://www.hee.nhs.uk/sites/default/files/documents/Commitment%20and%20Growth%20Advancing%20Mental%20Health%20Nursing%20Now%20and%20for%20the%20Future.pdf 8. Simpson A, Hannigan B, Coffey M, Barlow S, Cohen R, Jones A, et al. Recovery-focused care planning and coordination in England and Wales: a cross-national mixed methods comparative case study. BMC Psychiatry. 2016;16(147). 9. Clarke L. The therapeutic relationship and Mental Health Nursing: it is time to articulate what we do! J Psychiatr Ment Health Nurs. 2012;19:839–43. 10. Coffey M, Hannigan B, Barlow S, Cartwright M, Cohen R, Faulkner A, et al. Recovery-focused mental health care planning and co-ordination in acute inpatient mental health settings: a cross national comparative mixed methods study. BMC Psychiatry. 2019;19(115). Previous Next

e3705a45-1f6d-4b9b-9466-a536d5b062ff COMPLETED: Shift Pattern Feasibility Feasibility of collecting and using nursing shift patterns data in acute, community and mental health wards Principal Investigator: Dr Chiara Dall’Ora Team members: Dr Chiara Dall'Ora (Senior Research Fellow in Nursing Workforce, School of Health Sciences, University Of Southampton), Professor Peter Griffiths (Chair of Health Services Research, School of Health Sciences, University of Southampton), Ms Nicky Sinden (Head of Nursing Workforce at Portsmouth Hospitals NHS Trust), Dr Sarah Williams (Associate Director of Research & Improvement, and Academy Lead at Solent NHS Trust), Ms Catherine Smith (Associate Director Workforce Research and Innovation, Southern Health NHS Foundation Trust), Professor Jane Ball (Deputy Head of School (Research & Enterprise), School of Health Sciences, University of Southampton), Dr David Culliford (Senior Medical Statistician, School of Health Sciences, University of Southampton), Mr Anthony Austin, PPI contributor Start: 1 October 2020 Ended: 31 December 2022 Partners: University of Southampton, Portsmouth Hospitals NHS Trust, Solent NHS Trust, Southern Health NHS Foundation Trust. UNISON, Royal College of Nursing Lay summary Nurses and care assistants form the largest group of NHS staff. Most work in services that provide care across 24 hours of the day. Research indicates that the organisation of nursing shift patterns might affect the productivity of health services. The introduction of long shifts in nursing was offered as a strategy to maintain service levels while eliminating overlaps. However, research has found that long shifts are associated with higher rates of sickness and poorer patient care. So far, there has been little research exploring individual factors influencing shift work experiences among nurses, and research has been largely confined to acute hospitals. What did we learn/find out? Working long shifts (12-h or longer) leads to more burnout for nursing staff Having little choice around shift patterns leads to more nursing burnout Nurses working 12-h shifts reported lower choice around shift patterns than nurses working 8-h shifts When wards in Mental Health and community hospitals operated with high proportions of long shifts, there were higher rates of patient incidents This was particularly the case for self-harm incidents and incidents of patient disruptive behaviour What difference can this new knowledge make? It will help nurse managers and those in charge of creating nursing rotas It will help nurses working in inpatient settings choose their shift patterns It will keep patients safer because they will be cared for by nurses who are less tired Why is this important for patients, health and care providers and policy makers ? Nursing burnout is at an all time high, and we provided evidence that can help alleviate burnout Improving patient safety is of paramount importance for any health organisation, and our findings support changes to work organisation to improve patient safety What we are going to be doing next? We will keep disseminating our findings by publishing further papers We are now co-developing feasible changes to shift patterns with nursing staff and their managers as part of our new project We have applied for further funding to maximise analysis of datasets we have created as part of this study Publications https://human-resources-health.biomedcentral.com/articles/10.1186/s12960-022-00731-2 Shift work characteristics and burnout among nurses: cross-sectional survey | Occupational Medicine | Oxford Academic https://onlinelibrary.wiley.com/doi/10.1155/2023/6626585 https://onlinelibrary.wiley.com/doi/10.1111/jocn.16974

Listen to the issues and opinions around health and care Podcasts If you want to know more about the research we do and some of the issues and ethical considerations around health an care we have a series of podcasts which often explore issues is greater depth. Often you will be able to hear from different voices in the community who can provide a fresh perspective on conditions or experiences of health and care in different settings. Sam Belfrage a PhD Student with ARC Wessex has produced a series of SIX podcasts with patient experts and people with life experience of health conditions. The Power of Empowerment series looks at many aspects of health and care Episode 1 Long term conditions Episode 2 Research and co-production Episode 3 Pregnancy, birth & beyond Episode 4 Moving from child to adult services Episode 5 Chronic Pain: Patient & Practitioner Episode 6 Reflections on empowerment

0f5a7259-3857-4aa4-8b2c-0c628421e76a Interventions to support physical activity for adults (MOTH) Maintenance Of physical aTivity beHaviour (MOTH) programme Also see Digital support for maintaining physical activity in people with long-term conditions and Non-digital support for maintaining physical activity in people with long-term conditions – within Maintenance Of physical acTivity beHaviour (MOTH) programme Principal Investigator: Professor Mary Barker Deputy Lead: Professor Mary Barker ( Professor of Psychology and Behavioural Science) Professor Maria Stokes (Professor of Musculoskeletal Rehabilitation, School of Health Sciences, University of Southampton, UK Head of Active Living Research Group) Team members: Dr James Gavin, Luisa Holt, Professor Jo Adams , Dr David Culliford , Professor Suzanne McDonough (Royal College of Surgeons in Ireland; Visiting Prof at UoS), Dr Aoife Stephenson (Royal College of Surgeons in Ireland), Dr James Faulkner (University of Winchester), Mr Ranj Parmar , Mr Jem Lawson (Public contributors), Dr Euan Sadler , Dr Dorit Kunkel , Dr Simon Fraser , Professor Sandy Jack , Professor James Bilzon (University of Bath), Dr Simon Jones (University of Bath), Dr Enhad Chowdhury (University of Bath), Mr Jem Lawson and Mr Ranj Parmer (public contributors) Start: October 2019 Ends: 31 December 2023 Project Partners: Royal College of Surgeons in Ireland, University of Winchester, Bournemouth University, University of Portsmouth, Wessex Clinical Research Network, University of Bath, NHS, AHSN Lay summary Physical activity is an important part of managing and preventing long-term conditions (LTC), through supporting people to remain active, improve symptoms and reduce future problems. A variety of digital and non-digital programmes and tools exist, such as exercise referral schemes and websites or mobile applications, to support people to start being active. However, these programmes/tools are often less effective at helping people to stay active in the longer term. The MOTH programme aims to identify existing digital tools and their components that help people with LTCs to stay active and understand the factors that support or inhibit their use in the NHS. The programme is also working with exercise referral schemes to evaluate and understand the needs of participants to support physical activity after the scheme has ended. Ultimately, the MOTH programme aims to develop digital and non-digital support that is usable, accessible and relevant to help people with LTCs to stay active. In doing so, the programme is aligned to many of the NHS long-term plan priorities, such as ‘responding to population needs’, ‘supporting people to age well’ and ‘increasing equitable provision of resources’

2eeccab4-e624-4137-9443-6893d09b0589 COMPLETED: 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

PPI/E Strategy 2021-2024 summary report The page has a summary of our strategy for involving people in our research - sometimes this is referred to as Patient and Public Involvement and Engagement. We have created a separate page with a detailed version of our strategy which can be used by screen readers, and there is also a glossary to explain some of the language used in the documents. (it might be useful to have this open in another TAB on your browser for reference). If there is something not quite right then email us at arcwessex@soton.ac.uk for help or any comments. Involving the Public in our Research Patients and the public are at the heart of our vision to improve the health and well-being of people across Wessex[i]. The knowledge, experiences and support of patients and the public are essential to ensure that our research goals and solutions are relevant, prevent waste, and bring the greatest possible benefits to society. We use the terms involvement[ii] and engagement[iii] to describe activities that aim to prioritise the public voice in our health and social care research. We aim to deliver high quality public involvement and engagement for health and social care. his document summarises our ambitions and gives a few examples of activities we will deliver in our first year (April 2021-March 2022). We listen to voices relevant to our research priorities that reflect the diversity of the local population – ensuring the underserved[iv] have a voice. This year we will: Work with the leads of each project starting in 2021 to identify who is underserved in the context of each project. We will prioritise the voices of these underserved groups in our involvement activities. Publish guidance documents on how to improve virtual meeting accessibility. Inclusive Opportunities We have a culture that respects different perspectives, values contributions and supports mutually respectful and productive relationships. This year we will: Work with our public members to develop and trial approaches to blending face-to-face and virtual activities as we adapt to changing social distancing restrictions. Develop induction materials that outline the support structures available in ARC Wessex for involvement and engagement activities. Working Together We capture, monitor and share our learnings. This year we will: Adapt an involvement impact tool so we can use it to monitor the impact of our activities. Impact We provide health research communities of Wessex (including public) adequate PPI/E training, support and learning opportunities. This year we will: Develop a course supporting the public with their confidence contributing to virtual meetings. Evaluate a pilot mentorship scheme, where we paired new PhD students with a public partner to provide mentorship in involvement and engagement. Deliver a training course focused on skills for public involvement to our researchers. Support and Learning We use innovative approaches and good communication to stimulate knowledge-of, and interest-in, our research. This year we will: Collect a baseline measurement (ie starting position) of how well feedback processes are embedded in our involvement and engagement activities. This will include understanding how regularly public members are told what difference their contributions have made to research. Communications We involve the public at strategic and operational levels. This year we will: Involve the public in decisions about which projects we will fund this year. Collect feedback from our public members who have strategic positions to understand if they feel heard and included in decision-making. Governance [ii] Public involvement activities describe activities where research is carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. [iii] Engagement activities describe activities where information and knowledge about research is provided to and shared with the public. [iv] Underserved is the term we have chosen to use to describe people who are less well included in research. It is important to recognise that underserved groups are context-specific. There is no single, simple definition to describe all underserved groups. Want to know more? You can read our full strategy - or download a version as a file. Have questions or comments? Email ppiesupport @uhs.nhs.uk

Research Fellow < Back Skaiste Linceviciute Research Fellow Long Term Conditions Skaiste Linceviciute is a Research Fellow at the ARC Wessex Mental Health Hub at the University of Southampton appointed to work on projects related to the Long-Term Conditions and Ageing and Dementia themes. Skaiste brings expertise as a qualitative researcher in areas on uncovering the challenges and unmet needs of people living with long-term physical and mental conditions as well as pursuing research on person-centered support systems. Skaiste is also the Mental Health Hub's Researcher Representative for the ARC Public Involvement Forum Wessex, working together with other contributors ensuring research meaningfully addresses community priorities and is guided by people with lived experience. Previous Next

d94081d4-7fee-46f1-acf1-61bd1a5364fc Understanding barriers and enablers of using the Living with Long Term Conditions scale as part of routine care for people from under-served groups living with type 2 diabetes Chief investigator: Dr Leire Ambrosio, Lecturer, School of Health Sciences, University of Southampton. Team: Professor Mari Carmen Portillo, School of Health Sciences, University of Southampton Dr Lindsey Cherry, School of Health Sciences, University of Southampton Dr Kinda lbrahim, Associate Professor, Faculty of Medicine. University of Southampton Dr Michelle Myall, Principle Researcher, School of Health Sciences, University of Southampton Ms Rashmi Kumar, PPI representative Partners: Ha mpshire and Isle of Wight Integrated Care Board, Hampshire and Isle of Wight NHS Foundation Trust, University of Southampton, Diabetes UK, SO:Linked (Southampton Voluntary Services). Started: 1 October 2024 End: 31 March 2026 Why is this research important? In the England over 15 million people are living with at least one long-term conditions (LTC). People from under-served groups, are at greater risk of having one or more than one LTCs. This not only affects a person’s physical health, but other aspects of their lives, such as emotional, cultural, and socio-economic wellbeing. It is key for healthcare professionals, to understand and assess how a person is living with an LTC to provide person-centred care. We recently developed the Living with Long Term Conditions (LwLTCs) scale for English-speaking populations. This is a person-centred questionnaire to evaluate how well a person lives with a long-term condition, to inform care for people based on their individual needs. What we found We found that adults with LTCS face a "daily burden" because their symptoms fluctuate unpredictably, often leading to social isolation and a feeling of being "left behind" by a fragmented healthcare system. While both Adults and Healthcare Professionals felt the LwLTC scale is a valuable "communication bridge" that can highlight hidden mental health and social struggles, some barriers remain. For the tool to work in real life, it must be flexible—offering paper and digital versions or help from a staff member—rather than being a "one-size-fits-all" tick-box exercise. Ultimately, the findings show that while the scale helps make invisible struggles visible, its success depends on building trust, ensuring cultural sensitivity, and making sure that the information gathered actually leads to obvious changes in a patient's care. What we did with the new Knowledge By discovering the deep emotional and physical challenges real people face, we are supporting patients with LTCs to have a voice in their own care. We used this new knowledge to help the healthcare system move toward truly individualised and flexible care by highlighting that the scale works best as a "communication bridge" to uncover invisible mental health and social struggles. Our findings will help NHS move away from generic digital pathways by advocating for a "digital-choice" framework that offers paper, Braille, or face-to-face assistance for those who need it. By collaborating across the SCALE project, we are discovering how to build trust with underserved communities and ensuring the care system respects the "real-life" expertise of the patient. Where next? Building on these findings, we view this not as a conclusion but as a vital first step toward transforming how the NHS handles LTC care. A major next step is addressing the "readiness gap" in current practice by developing formal guidelines for facilitated engagement, where staff are trained to help patients navigate the tool face-to-face to prevent digital exclusion. We plan to take these learnings further by advocating for the scale to be used over time to track a person's health journey, rather than relying on a single snapshot. While it remains a struggle to shift traditional clinical systems away from rigid pathways, these findings create a sense of urgency: if we do not adopt these flexible, person-centered tools, we risk leaving the most vulnerable patients with LTCs far behind.

Development of a core outcome set for nurse wellbeing: a Delphi study Lead applicant: Dr Gemma Simons Co-applicants: Prof Jane Ball , Prof David Baldwin , Dr Emma Wadey, Dr Catherine Smith Participant Information Sheet: Download here Project Summary: Read project summary document (short summary) Read project summary document (long summary) Background : Little attention has been paid to the work lives and wellbeing of the nursing workforce, despite it being a priority area. Currently, there is no consensus on what wellbeing is or how it should be measured. An evidence-based, positive way of measuring wellbeing is through a Core Outcome Set. What is a Core Outcome Set? Outcomes are used to measure whether a strategy, intervention or action has had the required result. There are often multiple outcomes and ways of measuring them, which makes comparison difficult. A Core Outcome Set is an agreed, or consensus, set of outcomes and measurement tools that, when used, provide consistent and comprehensive focus as everyone is measuring and reporting the same outcomes in the same way. Aim: This project aims to develop a Core Outcome Set for Nurse Wellbeing. Objectives: Produce a list of potential wellbeing outcomes and help text to describe them in that are clear and meaningful for nurses [PPI panel] Develop a consensus between nurses and nurse wellbeing experts on a core outcome set for nurse wellbeing [Delphi Study] Identify and assess for quality measurement instruments for the core outcome set for nurse wellbeing identified by the Delphi study [Critical Literature Review] Select measurement tools for the identified core outcome set and agree on a final Core Outcome Set for Nurse Wellbeing [PPI panel and Study Advisory Group]. Implications and Impact: A Core Outcome Set for Nurse Wellbeing developed by nursing and nurse wellbeing experts will provide researchers and those undertaking governance with evidence-based and meaningful tools with which to evaluate wellbeing interventions. This study is registered on the Core Outcome Measures in Effectiveness Trials (COMET Initiative) database https://www.comet-initiative.org/Studies/Details/2433 Read all Mental Health Hub projects