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What is Integrated Neighbourhood Working?

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What is Integrated Neighbourhood Working?

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This document was developed as part of a Coproduction for Improvement Project, as a tool to promote engagement with the aim to provide a clear explanation of the following:

What is INW?

Why now?

Focus

Key principles

Benefits

What could it look like?

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NHS 10 Year Health Plan - Fit For The Future

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NHS 10 Year Health Plan - Fit For The Future

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We will reinvent the NHS through 3 radical shifts - hospital to community, analogue to digital and sickness to prevention. These will be the core components of our new care model. To support the scale of change we need, we will ensure the whole NHS is ready to deliver these 3 shifts at pace: through a new operating model, by ushering in a new era of transparency; by creating a new workforce model with staff genuinely aligned with the future direction of reform, through a reshaped innovation strategy; by taking a different approach to NHS finances.

From hospital to community: the neighbourhood health service, designed around you.

From analogue to digital: power in your hands

From sickness to prevention: power to make the healthy choice

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A re-designed community frailty pathway led by local geriatricians and primary care staff has brought together consultants, GPs, advanced nurse practitioners, social workers, pharmacists, other specialists, and the voluntary sector, to work as a single system supporting vulnerable patients within Hull and East Riding. The service has transformed care for older people and reduced GP appointments and hospital admissions by providing out-of-hospital care and enabling residents to keep healthy and live independently.

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A re-designed community frailty pathway led by local geriatricians and primary care staff has brought together consultants, GPs, advanced nurse practitioners, social workers, pharmacists, other specialists, and the voluntary sector, to work as a single system supporting vulnerable patients within Hull and East Riding. The service has transformed care for older people and reduced GP appointments and hospital admissions by providing out-of-hospital care and enabling residents to keep healthy and live independently.

What the system faced

Severely or moderately frail people make up around four per cent of the population of Hull and East Riding, yet account for up to 38 per cent of hospital bed days. They are four times more likely to die within a year, five times more likely to end up in hospital and six times more likely to go into a care home than others their age.

What the system did

The ICC was launched in 2018 and has since grown from strength to strength. Over the years the model has expanded to include care home outreach. Services such as Parkinson's , COPD and diabetes MDTs are run from the centre and more recently an advice and guidance line has been set up for health and care professionals to ring for specialist frailty advice.

Results and benefits

Cost savings on medication: As part of the pharmacy review, many people have seen unnecessary medication removed from their repeat prescriptions, saving around £100 per patient.

Integration and Innovation in Action

This case study forms part of our Integration in Action series, a collection of publications, podcasts and webinars which explores how effective partnership working is helping to address the biggest challenges facing health and care.

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Supporting people affected by frailty in Hull and East Riding

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A re-designed community frailty pathway has transformed care for older people and reduced GP appointments and hospital admissions.

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Kensington and Chelsea and Westminster's Guide to INTs

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Kensington and Chelsea and Westminster's Guide to INTs

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Particularly when developing our Neighbourhood Hubs, we found Kensington and Chelsea and Westminster's Guide to INTs valuable. As an introduction for residents and professionals, it describes that the INT will support and facilitate partners and professionals to work within a framework seamlessly to improve patient care for whole populations.

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In order to co-produce what adult frailty meant in each neighbourhood, we spent some time creating a useful working definition:

Frailty is a multidimensional and dynamic condition leading to reduced resilience and ability to cope and compromising the ability to undertake everyday tasks.

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The Central PCN INW has been focusing on developing the work from an Asset Based Community Development model. This has meant that we have spent a lot of time engaging with and developing relationships with community and voluntary sector providers and working with population health data to understand the needs of the local community.

Through workshops and a working group we have started to develop a set of interventions focused on reducing the risks of frailty in our communities. Interventions that are being developed include:

A Hub, supported and developed in collaboration with the Saints Foundation at the YMCA Newtown which will provide opportunities to increase physical activity as well as providing socialisation, signposting and access to other health and community organisations.

The development of a mobility equipment store alongside the Red Cross to support better access to mobility aids in the community. With access to Trusted Assessors and information and signposting.

Increasing engagement with the HIOW Healthcare NHS Foundation Trust Complex Care MDT to support better connection for patients who need specialist health and care support.

Development and research to understand from residents how getting older feels and what the 'work' of living with long term conditions, frailty and ageing feels like. This will support a better understanding of what residents and communities need to be able to plan for ageing well.

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We have been working alongside Public Health colleagues for support with data and cohort analysis. The Health Analytics platform, managed by the NHS Hampshire and Isle of Wight Integrated Care Board, is a powerful tool designed to enhance patient outcomes, reduce health inequalities, and improve healthcare capacity. The platform supports various analytics, including population profiles, chronic disease prevention, system utilisation, severe mental illness and has a self-service function. The platform is being used by increasing numbers of analysts and clinical colleagues across the system to better understand population needs and identify cohorts of patients for targeted interventions. A new risk of admission tool enables users to predict the probability of future hospital admission in the next 12 months through a risk score based on an individual patient’s previous admissions, long-term conditions, and other risk factors. This proactive approach has the potential to improve patient outcomes but also reduces health inequalities by targeting high-risk groups and ensuring that interventions are tailored to their specific needs. Practice staff can register for use of the Health Analytics platform and will be able to see their own patient data; analysts, commissioners, and public health professionals get access to anonymised data views and can use the data to understand population need and plan services. If you are interested in registering, you will need an NHS email address and be registered on the ‘FutureNHS’ platform which hosts the Health Analytics registration process.

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We are a collaboration platform empowering everyone working in health and social care to safely connect, share and learn across boundaries. Be part of a FutureNHS.

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Next Steps for integrating primary care - Fuller Stocktake Report 2022

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Next Steps for integrating primary care - Fuller Stocktake Report 2022

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This report (2022) made several recommendations for Integrated Care Systems to streamline access to care and advice, provide more pro-active, personalised care with support from a multi-disciplinary team and help people stay well longer.

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Southampton Data Observatory brings together data from key stakeholders across Southampton and Hampshire and, combined with nationally published data, makes it accessible to professionals, businesses, the voluntary sector, citizens and communities. This page draws together all of the summary slide sets for various topics all in one place. These slide sets bring together data and analysis into a helpful visual summary of the main issues and key needs in the city for any given topic.

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Independent Investigation of the National Health Service in England

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Independent Investigation of the National Health Service in England

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The most recent Darzi review has also highlighted the need for preventative and community models of care to be developed to reduce the burden on Primary and Acute health care.

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Independent investigation of the NHS in England

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Lord Darzi’s report on the state of the National Health Service in England.

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National NHS objectives for 24/25 include ambitions to improving health and joining up care, including steps to: join up care closer to home including through integrated neighbourhood teams and place-based arrangements with local authorities and other system partners.

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NHS England » Priorities and operational planning guidance 2024/25

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NHS England » Priorities and operational planning guidance 2024/25

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Chief Medical Officer's Annual report 2024 Health in Cities

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Chief Medical Officer's Annual report 2024 Health in Cities

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This report describes Cities as often being a patchwork of much smaller, distinct communities with strong internal links and support but relatively little interaction with other communities in quite close proximity. This is both a strength because social movements, services and the voluntary sector are often highly engaged in these communities, and a weakness because provision of health and social care services can often feel fragmented and less than the sum of its parts. National and local government should undertake co-ordinated and concerted efforts to break the cycle of ill health in those areas of cities where it has become entrenched. Concentrating prevention efforts and resources in these areas and adapting to their local communities is likely to be both more efficient and more effective than spreading a uniform service thinly over entire cities… Maintaining good health for the longest possible time can be harder in cities and should be seen as a major priority… Steady, prolonged engagement rather than stop-start initiatives is key to maximising the chances of effective health improvement.

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Hampshire and Isle of Wight Integrated Care Board (ICB) stood up a transformation programme which focuses on primary and local care; addressing same day access, urgent care response, integrated neighbourhood working (INW), proactive case management, virtual wards, and telemedicine, asking for local place systems to develop their own local operating model to meet the needs of their communities. In April 2024, a Southampton INW Task and Finish Group (TFG) was set up to provide a means of driving the programme forward. The group has brought colleagues together from Health and Social Care, Public Health, alongside the Project Lead and Coordinator, who have formed new relationships and links and will continue to develop, provide direction, and support the programme as it evolves. The group’s purpose is to develop and mobilise integrated neighbourhood team models which meet the need of the local population. The programme has been codesigned to enable partnership working to flourish across services, organisations and community groups within areas loosely defined by each of the Primary Care Network footprints. The TFG provides regular progress reports to Southampton & Local Care group (PLC), whose members are from Southampton health, care, and voluntary sector, to inform progress and enable them to uphold their responsibilities in providing oversight and accountability of the programme.

As part of our project journey so far, we have spent a great deal of time researching and developing documents that we felt would be useful put together in this way, to share with others to aid with INW thinking.

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To establish Integrated Neighbourhood Working which responds to local population needs to optimise health and well-being, and reduce inequalities. Aspiring to provide a range of accessible services which are preventative, proactive and person-centred. Working collaboratively and being strongly aligned and connected across all partners agencies.

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Physical Activity Partners

Saints Foundation

Energise Me

St Marys Leisure Centre - Active Nation

Health and Care Partners

Hampshire and IOW Healthcare NHS Foundation Trust

Public Health (SCC)

Adult Social Care (SCC)

Community Mental Health

Community Nurses / Community Independence Service (HIOW HC)

Solent Medical Services

Older Peoples Mental Health Team

HIOW ICB

Health Innovation Wessex

Community Partners

Southampton Voluntary Services

Healthwatch

Unpaid Carers

Southampton Mental Health Network

We Make Southampton

YMCA Newtown

Board in the City

Age Well Partners

Age UK

Communicare

Social Care in Action

And most importantly our communities.

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As we develop INW, it become obvious that there is also a need for the development of physical spaces (Neighbourhood Hubs) that we can centre activity around. Situated in communities and delivering community focused interventions delivered by partners from across the system; Hubs can provide a focal point to INW development and delivery. The Kensington, Chelsea and Westminster’s Guide to INTs (detailed below) describes how Hubs can support a network which links local assets and provides an anchor point for multi-agency delivery and neighbourhood connections.

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One Early Adopter PCN also designed an infographic to set out their starting point and identify questions that their INT is seeking to explore and answer.

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We designed an Collaborative Model as a visual aid for initial engagement when sharing our vision and plan for INTs.

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This Milestones Template proved useful when sharing our progress using the language for the various stages: seeds, planting, watering, growing, strengthening, and sharing. It also includes Roadmaps designed by the Early Adopter PCNs.

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This was created to share our progress further, including further details about our objectives.

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SHAPE is an online, interactive, data mapping, analysis and insight tool that supports service planning and estates strategy development.

Supported by the Department of Health and Social Care, SHAPE is a web enabled, evidence based application that informs and supports the strategic planning of services and assets across the public sector. The primary aim of the application is to facilitate scenario planning and option appraisals in support of public services. Its analytical and presentation features can help service commissioners to determine the service configuration that provides the most affordable access to services. The demographic and service data, combined with the information on estates location and performance, is also used to support estates strategy and business case development.

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Supported by the Department of Health and Social Care, SHAPE is a web enabled, evidence based application that informs and supports the strategic planning of services and assets across the public sector. The primary aim of the application is to facilitate scenario planning and option appraisals in support of public services. Its analytical and presentation features can help service commissioners to determine the service configuration that provides the most affordable access to services. The demographic and service data, combined with the information on estates location and performance, is also used to support estates strategy and business case development.

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SHAPE is an online, interactive, data mapping, analysis and insight tool that supports service planning and estates strategy development.

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This Strategy was designed to share our progress to date and and planned developments towards the end of the 12 month project.

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When developing MDT working, which will be a focus of INW, we recommended An introduction to SBAR training for Primary Care.

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SBAR Communication Training for Primary Care

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Our team at Solent NHS Trust, in collaboration with a local GP in Southampton, has produced this 25-min training video to support the use of SBAR in Primary Care. We feel that this training is very much needed, since the majority of training and videos available online focus on acute examples and scenarios. 

Copy this link to view and download our handy infographic: https://drive.google.com/file/d/1tnoUCHrCpJYG9OPWDTajL0RLaQG7KFEO/view?usp=sharing

Copy this link to view and download our self-reflection worksheet: https://drive.google.com/file/d/1Sg8BasMo0TsEY5qVpxXbHROdqNVN47aa/view?usp=sharing

We’d value hearing your thoughts / feedback on this training and are asking everyone who views the training video to give us feedback. You can do this by completing our MS Form: https://forms.office.com/Pages/ResponsePage.aspx?id=wRwyQbnsfEaw1YVGRNlOO2rLhQCJQZZKlitlgeY-zN5UQkRBOTJIVFZMUThYU09RUjlHRFcxUFpZSC4u

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The census is undertaken by the Office for National Statistics every 10 years and gives us a picture of all the people and households in England and Wales.

The census asks questions about you, your household and your home. In doing so, it helps to build a detailed snapshot of our society. Information from the census helps the government and local authorities to plan and fund local services, such as education, doctors' surgeries and roads.

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A guide to data, statistics and the ONS - Office for National Statistics

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Watch our video to find out how we at the Office for National Statistics (ONS) collect and use data to produce statistics.

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These profiles are designed to support GPs, Primary Care Networks (PCNs), integrated care boards (ICBs) and local authorities to ensure that they are providing and commissioning effective and appropriate healthcare services for their local population.

In addition to viewing individual practice profiles, you can view summary profiles for PCNs and other higher geographies. Each practice can be compared with an ICB sub-location (formerly CCG), PCN and England.

For the mapping of GPs to PCNs, we are currently using this epcn file (25 October 2024), available from Organisation Data Service (NHS England). Aggregated values based on this mapping may differ e.g. from QOF PCN values or the previously published PCN values where legal entities have changed in the meantime.

Using a variety of graphical displays such as spine charts and population pyramids, the tool presents a range of practice-level indicators drawn from the latest available data, including:

Local demography

Quality and Outcomes Framework (QOF) domains

Cancer services

Maternal and child health

Antibiotic prescribing

Patient satisfaction

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Introduction

These profiles are designed to support GPs, primary care networks (PCNs), clinical commissioning groups (CCGs) and local authorities to ensure that they are providing and commissioning effective and appropriate healthcare services for their local population.

In addition to viewing individual practice profiles, you can view summary profiles for PCNs, CCGs and other higher geographies. Each practice can be compared with the CCG or PCN and England.

Note: We are using for the mapping of GPs to PCNs the latest available epcn file (29 Oct 2020) and aggregated values are based on this mapping which may differ e.g. from QOF PCN values.

Using a variety of graphical displays such as spine charts and population pyramids, the tool presents a range of practice-level indicators drawn from the latest available data, including:

Local demography

Quality and Outcomes Framework domains

Cancer Services

Antibiotic prescribing

Patient satisfaction

The profiles do not provide an exhaustive list of primary care indicators, but they do allow a consistent approach to comparing and benchmarking across England.

For more information consult the User guide and FAQs.

Profiles are generated for all practices in QOF 2019/20 with a list size of at least 750 patients and for other practices if they had according to NHS digital in April 2020 a list size of at least 750 patients and there exists valid GP patient survey data for the practice for the same year. For details see: Rules for inclusion and list of included practices.

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These profiles are designed to support GPs, primary care networks (PCNs), clinical commissioning groups (CCGs) and local authorities to ensure that they are providing and commissioning effective and appropriate healthcare services for their local population. In addition to viewing individual practice profiles, you can view summary profiles for PCNs, CCGs and other higher geographies.

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LWP's INW aims to provide a foundation for all that happens within the communities it supports. Collaborating with partners, LWP will facilitate an agile framework in response to the individual needs of residents and emerging themes within their neighbourhood and across neighbourhoods. Underpinned by these guiding concepts:

• Communities provide opportunities

• Communication and collaboration

• Timing is key

• Identify key themes

• Consider scope

• Prioritise and localise

• Fluid approach - lead from residents

• Avoid hospital admission

A working group has been developed, meeting fortnightly and focusing on 3 workstreams:

1. Focus on frail patients with avoidable admission - with Care Coordinators providing continuity (Group 1: mild/moderately frail. Group 2: Severely frail)

2. Building Collaboration - with permanent (fixed) assets and extended assets

3. Patient Journey - supporting patients to identify current needs and navigate opportunities and map out their plan

Our current focus is on the following developments:

• Patient Proactive Assessments being completed by Care Co ordinators

• Transition of existing One Team MDT into INW MDT for most severely frail patients, including hospital inpatients most at risk of re-admission

• Collaborative VCSE forum in operation to offer support and develop themes and interventions for the INT

• To understand whether prioritisation of Care Co ordinator assessments in this work can be informed by the UoS MELD-B research project

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meld-b | Public Policy|Southampton | University of Southampton

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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.

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The impact of living with mutliborbidity on everyday life

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The impact of living with mutliborbidity on everyday life

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The impact of living with multiple long-term conditions (multimorbidity) on everyday life - a qualitative evidence synthesis - PubMed

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Show authors

662 Accesses

115 Altmetric

Metrics

Abstract

Background

Multiple long-term conditions (MLTCs), living with two or more long-term conditions (LTCs), often termed multimorbidity, has a high and increasing prevalence globally with earlier age of onset in people living in deprived communities. A holistic understanding of the patient's perspective of the work associated with living with MLTCs is needed. This study aimed to synthesise qualitative evidence describing the experiences of people living with MLTCs (multimorbidity) and to develop a greater understanding of the effect on people's lives and ways in which living with MLTCs is 'burdensome' for people.

Methods

Three concepts (multimorbidity, burden and lived experience) were used to develop search terms. A broad qualitative filter was applied. MEDLINE (Ovid), EMBASE (Ovid), PsycINFO (EBSCO), CINAHL (EBSCO) and the Cochrane Library were searched from January 2000-January 2023. We included studies where at least 50% of study participants were living with three or more LTCs and the lived experience of MLTCs was expressed from the patient perspective. Screening and quality assessment (CASP checklist) was undertaken by two independent researchers. Data was synthesised using an inductive approach. PPI (Patient and Public Involvement) input was included throughout.

Results

Of 30,803 references identified, 46 met the inclusion criteria. 31 studies (67%) did not mention ethnicity or race of participants and socioeconomic factors were inconsistently described. Only two studies involved low- and middle-income countries (LMICs). Eight themes of work were generated: learning and adapting; accumulation and complexity; symptoms; emotions; investigation and monitoring; health service and administration; medication; and finance. The quality of studies was generally high. 41 papers had no PPI involvement reported and none had PPI contributor co-authors.

Conclusions

The impact of living with MLTCs was experienced as a multifaceted and complex workload involving multiple types of work, many of which are reciprocally linked. Much of this work, and the associated impact on people, may not be apparent to healthcare staff, and current health systems and policies are poorly equipped to meet the needs of this growing population. There was a paucity of data from LMICs and insufficient information on how patient characteristics might influence experiences. Future research should involve patients as partners and focus on these evidence gaps.

Peer Review reports

Background

Multiple long-term conditions (MLTCs) or 'multimorbidity', usually defined as living with two or more long-term conditions (LTCs) where each condition is given equal importance, is distinct from co-morbidity where one condition is considered the index condition with additional co-occurring conditions [ 1]. MTLCs is common, has increased in prevalence over the last 20 years in many countries, and is having major impacts on health and social care systems and people's lives [ 2, 3, 4, 5]. Women generally experience a higher burden of MLTCs than men, and people from certain ethnic groups and those living with greater socioeconomic deprivation develop MLTCs earlier in life and such inequalities are increasing [ 6, 7, 8].

The challenges presented by various aspects of living with MLTCs have previously been characterised as 'burden', including symptom burden and treatment burden, which both affect wellbeing [ 9, 10]. Several models have been developed to capture these challenges. In 1985, Corbin and Strauss described the three lines of work model for managing chronic illness at home, incorporating 'illness work', 'everyday life work' and 'biographical work' [ 11]. The 2012 Cumulative Complexity Model described the balance between the workload of demands on people living with LTCs and their capacity to address those demands [ 12]. And the 2013 Burden of Treatment Theory described burden of treatment as the work associated with healthcare [ 13, 14].

The type and number of LTCs a patient is living with is important, and increasing LTC count is associated with higher treatment burden and symptom burden [ 9, 15]. Many studies have quantified, grouped and clustered MLTCs by number and type of conditions. However, some conditions are more challenging than others for patients in terms of symptoms, impacting self-management demands (burden of treatment) and health-related quality of life [ 13, 14, 16, 17, 18, 19]. In addition, MLTCs usually develop across the lifecourse with their impact on people's lives developing and changing over time [ 5].

The individual context of the patient's life also affects burden. Recent evidence from South Africa, Malawi and the UK has shown that financial precarity both increases and affects the capacity to manage treatment burden, and a recent UK study recently identified high treatment burden in some people experiencing homelessness [ 20, 21, 22, 23].

Many health systems are organised around single conditions and there is evidence that some people experience 'burnout' resulting from the demands of LTCs and their self-management tasks [ 24]. From the perspective of people with MLTCs, such problems may be multiplied, and a holistic understanding of the many demands of living with MLTCs from a patient perspective is therefore needed.

Several studies have explored aspects of the lived experience of MLTCs involving a variety of LTC combinations [ 13, 19, 25, 26, 27, 28, 29, 30, 31, 32]. Additionally, in 2017, Rosbach and Andersen conducted a systematic review focussing on burden of treatment in patients with MLTCs [ 15].

The aim of this study was to synthesise published qualitative evidence describing the experiences of living with MLTCs (multimorbidity) and develop a greater understanding of the effect on people's lives and ways in which living with MLTCs is 'burdensome' for people in order to understand the holistic experience of everyday life for people living with MLTCs. In keeping with this aim, our study was co-produced with PPI (Patient and Public Involvement) colleagues.

Methods

This qualitative evidence synthesis was undertaken as part of the NIHR-funded Multidisciplinary Ecosystem to study Lifecourse Determinants and Prevention of Early-onset Burdensome Multimorbidity (MELD-B) study [ 33]. We report our search according to the ENTREQ checklist (Supplementary Table 2) [ 34].

Advice regarding qualitative systematic review methods was provided by subject expert SM. The protocol was registered with the International Prospective Register of Systematic Reviews (PROSPERO, Registration Number CRD42023391056) [ 35]. The primary research question 'What is it like to live with MLTCs (multimorbidity) and which aspects do people living with MLTCs consider burdensome and make living with multimorbidity complex?' was initially developed using the PerSPecTIF and SPIDER frameworks [ 36, 37]. Discussions with PPI colleagues led to a broadening of the study population from primary care patients to 'people living with MLTCs because some people will be more commonly reviewed in secondary care and rarely seen in primary care. Our discussions also highlighted that 'work ', opposed to 'burden', was a better way to frame the concepts of difficulties and challenges associated with living with MLTCs. The word 'work' will therefore be used in preference to 'burden' where relevant in the manuscript. The secondary research question was 'Was there any PPI input into the papers identified by this review?'.

Inclusion and exclusion criteria

Inclusion and exclusion criteria are shown in Table 1.

Table 1 Inclusion and exclusion criteria

We included qualitative studies (primary research or qualitative syntheses) and mixed methods studies with a substantial qualitative component where at least 50% of participants were living with three or more LTCs. This allowed a greater focus on multimorbidity rather than co-morbidity and was also a pragmatic decision due to the very high number of studies identified by the criteria of two or more LTCs. We excluded 'comorbidity' studies due to the distinction of multimorbidity having no index disease and "all morbidities...regarded of equal importance" [ 38, 39]. In view of our focus on the lived experience of multimorbidity we also excluded studies principally focusing on interventions, medicines, technology and self-management.

Search strategy

The search strategy was developed in consultation with Patient and Public Involvement (PPI) members, subject matter experts (SF, SM, FM, MA, NF) and with advice from engagement librarians at the University of Southampton. Search terms were developed as three concepts ('multimorbidity', 'burden' and 'lived experience') with a qualitative filter, each with a string of terms and relevant MeSH terms, and were developed from a review of grey literature reports, published searches, PhD/MD theses and an online thesaurus [ 40]. The search was refined in study team meetings. The full searches are available in the Supplementary Table 1.

The searches were conducted in January 2023 and the date range was restricted to 1st January 2000 onwards for pragmatic reasons (the very high number of studies). The date range for the term 'comorbidity' was restricted from 2000-2018 in MEDLINE and Embase as this term was used prior to the introduction of the Medical Subject Headings (MeSH) terms 'multiple chronic conditions' and 'multiple long-term conditions' by the National Library of Medicine (NIH) in 2017 and 2018 respectively [ 41, 42, 43].

The following databases were searched: MEDLINE (Ovid), EMBASE (Ovid), PsycINFO (EBSCO), PsycArticles (EBSCO), CINAHL (EBSCO) and the Cochrane Library, and references were stored in EndNote. The Journal of Multimorbidity and Comorbidity was manually searched for additional references and we undertook reference list searching from included articles.

Screening

Double screening of the title/abstract of all studies was conducted using Rayyan software (apart from screening of Cochrane Library studies which was undertaken in Excel for pragmatic reasons) [ 44]. Rayyan records identified for full text screening were exported into Excel. We searched for full text PDFs for all articles. Any articles which were identified as being a conference abstract were excluded at this point. EH created an Excel template for full text screening. EH read and assessed all papers (blinded to the results of the second screeners). A team of screeners (KM, KSYC, LL, MA, SF) were emailed the screening spreadsheet and independently assessed a subset of the full texts and completed the Excel template. Once all full text reviews were returned, EH compared the two decisions. Any discrepancies were adjudicated by senior author SF. Studies were not excluded based on quality.

Quality appraisal of included studies

Two researchers (EH and one of KSYC, SS, MA, CG, SF) independently undertook the quality assessment of included studies (blinded) using the Critical Appraisal Skills Programme checklist for qualitative research [ 45, 46]. In any cases where there was initial disagreement between the two assessors on an aspect of study quality then a conservative approach was adopted and the lower quality category was chosen.

Data extraction

Information on the author, year of publication, location, study design, number of participants, participants' age, sex, ethnicity and socioeconomic status, and number of LTCs were extracted from the methods and results section of included papers. Individual studies were checked for duplicate populations and included reviews were checked to see whether they incorporated individual studies that were included separately in our study. If this was found to be the case, the individual studies were not excluded, but the potential for double representation of those studies was noted and considered in the analysis process. Paper PDFs were converted into word documents and imported into NVivo [ 47].

Data analysis

The method of synthesis was determined by the data, rather than apriori, as is considered best practice [ 46, 48]. Line by line coding was undertaken in NVivo for all studies by EH. All text relating to burden in Results and Discussion sections of papers were coded, except where information was not from the patient perspective, for example in studies who also interviewed spouses, caregivers and healthcare providers.

A second coder (SF) manually coded 10% (five papers) and coding was compared for agreement, with no new codes being generated. Regular lengthy and active discussions took place between EH, SF and subject expert SM over the course of the analysis. We followed 'RETREAT' guidance to choose methodology and undertook thematic synthesis [ 49]. We initiated analysis by coding to several broad burden themes relating to symptoms and treatment burden. Such themes were drawn from our collective research experience in this area. These broad themes provided an initial analytic architecture.

Our analysis then proceeded in an iterative manner, adding more depth, themes and sub-themes, with the relative importance of each shifting as we progressed. We initially developed descriptive themes. These themes gave a description of the experience of living with MLTCs, by reference to how people described their experiences in the papers. Our analytical themes provide an interpretation of what 'burdensomeness' meant, by considering the experiences together with a broader understanding of the impact. These analytical themes were informed by our knowledge of the lack of a holistic approach for people living with MLTCs, and our insights that healthcare and self-management are themselves sources of work for patients. Concepts were derived either from a single code or a group of related codes within a theme. These were too numerous to be subthemes.

A 'constant comparison' approach to discussions was taken whereby codes and emerging themes were repeatedly discussed and iterated over several months within the research team (including PPI coauthor LL, and subject experts FM, MA, NF, SF, SM), the wider MELD-B team, and with the wider MELD-B PPI Advisory Board to check for relevance and understanding.

GRADE-CERQual assessment of study findings

The GRADE-CERQual (Confidence in Evidence from Reviews of Qualitative research) assessment approach was carried by two researchers together (EH, SF) [ 50]. This process assesses the key issues for included papers in a qualitative evidence synthesis around four concepts: methodological limitations, coherence, data adequacy and relevance, to assess confidence of the evidence from the review [ 50].

Reflexivity

EH, SF FM, NF and MA have experience of caring for people with MLTCs in general practice. FM, SM, MA and SF are academic MLTCs subject experts. LL is a PPI member with personal experience of living with MLTCs. KM is a junior hospital doctor. KSYC is a PPI officer and researcher. SS is a post-doctoral researcher with expertise in lifecourse epidemiology. CG is a public health registrar and previous physiotherapist. NA has a clinical background and is a subject expert in epidemiology, early life and long Covid.

We acknowledge that our authors' a priori experience meant that we could not be value free when conducting this study. We are a primary care centric team with a strong representation from medicine. Our interpretation of findings may have been influenced by many years of experience consulting patients and taking a medical perspective. However, we feel this was balanced by input from PPI and social science within the team.

Regular reflexive practice occurred during team meetings (including PPI), where our discussions were shaped by discussion of our prior academic experience and our lived experience of MLTCs. These discussions led to our adoption of the preferred terminology of 'work' rather than 'burden', and also allowed us to discuss whether emotions could be considered as 'work'. Our public contributors additionally suggested the inclusion of a GRIPP2 form and wrote the first draft.

With respect to the analysis, we approached the data with a previous understanding of burden, for example treatment burden and symptom burden. We were also aware of some of the issues for people with lived experience of MLTCs and we had also gained early further insight from the title/abstract and full text screening process. We also accept that all members of our team will have been influenced by our familiarity with different conditions, particularly those which we are living with, those of family members and those where we are 'subject experts'. Our initial descriptive themes (how people described their experiences in the papers) were developed into analytical themes by considering these experiences together with a broader understanding of the impact. These themes were shaped by discussion with those with lived experience of MLTCs.

When writing up our work we did not give any one theme more importance than another. All members of the team were invited to give feedback on the paper drafts, and all comments were given equal consideration.

Patient and Public Involvement (PPI)

PPI input was a strength of this study as it allowed us to fully embrace the interpretive nature of an evidence synthesis-we coded the data and PPI contributors were able to add real world interpretation to what these codes might mean. This was emphasised by the co-presentation (researcher and public contributor) of our work which helped to powerfully convey our work.

LL co-developed the research questions, search strategy and synthesis method, helped to screen and assess the quality of papers, discussed and analysed emerging themes, and co-authored our research paper. The extent of patient and public involvement in the included studies was suggested and explored by LL and a GRIPP2 reporting checklist has been cowritten [ 51].

Results

The search identified a total of 30,803 unique studies. 30,685 were excluded by title/abstract screening (exclusion reasons not recorded). 72 of the remaining 118 studies were excluded by full text screening leaving 46 included in the review (Fig. 1) [ 25, 29, 31, 52, 53, 54, 55, 56, 57, 58, 59, 60, 61, 62, 63, 64, 65, 66, 67, 68, 69, 70, 71, 72, 73, 74, 75, 76, 77, 78, 79, 80, 81, 82, 83, 84, 85, 86, 87, 88, 89, 90, 91, 92, 93, 94].

Exclusion reasons for full text screening were as follows: studies where fewer than 50% of participants were living with three or more LTCs (28), study not focussed on work or burden (14), conference abstract (no full text article) (9), focus on self-management (8), no substantial qualitative component (5), duplicate (the same study with more than one record in Rayyan) (3), focus on medication (2), study not focussed on lived experience (2), not from the patient perspective (1).

Characteristics of included studies

The characteristics of included studies are shown in Table 2.

Table 2 Characteristics of Included Studies

Of the 46 included studies, 42 were primary research studies and four were qualitative syntheses [ 61, 66, 75, 89]. The four qualitative syntheses included a total of 19 of the 46 primary research studies also included in our review [ 25, 52, 54, 55, 56, 59, 60, 64, 65, 67, 71, 76, 78, 79, 80, 81, 87, 88, 92]. There were additionally four duplicate populations within the 42 included primary research studies [ 59, 60, 64, 65, 67, 68, 90, 94].

The number of participants ranged from nine to 883 in the primary research studies, and from 173 to 2631 in the systematic reviews. The total number of participants with MLTCs across all 46 studies was over 5000 (the exact total number is difficult to ascertain due to duplicate populations and lack of clarity within some studies).

Of the 42 primary research studies, 36 used interviews as their data collection method, one used focus groups, two used both focus groups and interviews and one used surveys (mixed methods). One study was a multiple case study over 18 months and one study used triangulation of data from electronic health records, observation of primary care consultations and interviews. The four systematic reviews contained studies using a range of data collection methods, with interviews being the most common.

19 papers reported numbers of men/women (including one systematic review), 24 papers reported numbers of males/females, one systematic review reported numbers for males/females/transgender females/'other' for a subset (41) of 46 studies and two systematic reviews did not report numbers (one reported the majority of studies recruited predominately more women).

Thirty-one studies did not clearly report the ethnicity and/or race of participants. Two studies reported 100% white participants, five studies recruited mostly white participants, three studies recruited mostly Caucasian participants and one study recruited Chinese participants. One study reported a minority of black participants only. One study had four cohorts-two cohorts recruited predominantly white participants, one cohort recruited predominantly non-white participants and one cohort recruited predominantly African-American participants. One study had representation from individuals of Māori, Pasifika and European descent, and in one systematic review most of the included studies did not report ethnicity or the majority of participants were white.

Comparison across studies for socioeconomic status was difficult due to inconsistent reporting. 29 papers considered individual level factors such as income, health insurance provider, education level, employment level and living situation. Six papers considered socioeconomic status at area level and three papers considered both individual and area level. Eight papers did not cover socioeconomic status, or it was poorly described. Six papers specifically noted socioeconomic diversity.

Study locations for primary research studies were: 11 USA, six UK, seven Canada, four Denmark, three Sweden, three Australia, two China, one New Zealand, one Netherlands, one Netherlands and Belgium, one Ghana, one Germany, one Brazil. The four systematic reviews included studies across several countries. Most studies included a wide age range of participants, though 14 studies focused on older age groups (65 +).

Quality appraisal

The overall quality of the included papers was generally high, although researcher reflexivity, discussion around researchers' responses to situations occurring during the research, and acknowledgement of how any changes in the protocol impacted on the research was under-reported in many studies (Fig. 2).

Thematic synthesis

Eight overarching themes were generated to represent the work of living with MLTCs. These were accumulation and complexity, learning and adapting, investigation and monitoring, medication work, health service and administration, symptom work, emotional work and financial work. Further detail is given in Fig. 3 and Table 3.

Table 3 Themes, concepts and quotes from included studies

The eight themes were often overlapping, reflecting the complex and holistic reality of the lived experience of MLTCs. Some concepts aligned with more than one theme, for example the practical work of polypharmacy naturally fit into medication work but we argue that drug interactions and the additional work when a new medication is added equally corresponds with our accumulation and complexity theme. Time burden was an important factor across many themes. For example, papers described people with MLTCs having to invest considerable time and effort undertaking investigations and monitoring and self-management tasks, attending appointments and organising medications. The impact of poor mental health was also identified as having wide-ranging influence on many areas such as self-management, organising healthcare, adherence to medications and social activities. In view of the way both added to the complexity of living with MLTCs, time burden and the impact of poor mental health were included in the accumulation and complexity theme.

Accumulation and complexity

Here, the additional work for individuals who are living with multiple, rather than just one, LTC is described. Although the nature of individual conditions is important, we identified common difficulties experienced by many people living with MLTCs. These included accumulating new and additional conditions over time, not receiving a diagnosis, interactions between diseases, symptoms or treatments, the need to make constant decisions and prioritisations, and unpredictability/uncertainty. An example was described by Aberg and colleagues [ 52]:

"The complexity of living with several simultaneous health problems is that its intensity and impact on daily life can vary from time to time, from day to day but also during the day".

Balancing work, appointments and treatment was challenging for participants, as noted in Ørtenblad and colleagues [ 79]:

"Several of the informants experienced conflicts between managing their diseases and treatments and their work life...although she is fairly young, she is never asked how appointments fit with her work schedule, perhaps, she wonders, because people suffering from multiple diseases are not expected to have jobs"

Living with MLTCs involves complex management associated with the coordination of multiple health relationships, above and beyond those for people with an individual LTC. Given the great variety in the nature of conditions, their combinations and challenges, patients commonly understand their individual circumstances better than others, and further work results from deciding what is important and what to disclose to health professionals. This self-reliance and ownership work was described by Zulman and colleagues [ 94]:

"...patients with MCCs [multiple chronic conditions] often feel that they must serve as their own expert and advocate for their needs".

Other concepts within this theme were daily burden and endless, lifelong work. Burden and exhaustion due to self-care was specifically noted. The many different, and sometimes conflicting, self-management tasks for various conditions can require a large degree of effort, and sometimes be overwhelming, even leading to healthcare disengagement, as described by Francis and colleagues' [ 70]:

"Although the self-management approach may be entirely appropriate for people with a single, early stage LTC, there is little congruence between the self-management approach's idealised expert patient and this study's exhausted participants".

Finally, this theme highlighted the importance of the individual context of MLTCs. MLTCs are experienced by participants within a context determined by issues such as urban or rural environment, housing, employment and financial circumstances, together with the individual's previous life events and education, social circumstances and support structures.

Learning and adapting

This theme encompasses the work that is required to learn about new and existing conditions and their management, and necessary life adaptation and lifestyle changes. Participants sought a variety of health information, particularly around LTCs, medications and interactions, and how to improve self-care skills.

Participants undertook regular assessment work, for example reappraisal of their conditions, comparing themselves with others and trying to understand the cause of problems and how to manage symptoms. There were sometimes conflicting goals between patients and healthcare professionals (and lack of discussion).

Self-management was frequently discussed. Common self-management activities were dietary and physical activity changes, but there were many other examples such as breathing exercises, stretching, applying heat/ice, acupuncture and massage along with lifestyle modifications such as reducing work hours and resting. An example was described in a study by Clarke and Bennett [ 60]:

"Specifically, she had made changes to her routines, educated herself about her various illnesses, begun to take four prescribed medications, employed various non-prescription drugs, and tried a number of home remedies".

The learning and adapting theme also encompasses biographical work, the disruption to people's identity and sense of self, which can prompt a grief reaction. There was clear recognition of social losses including increasing isolation, a restriction in social activities, feelings of premature ageing and loss of independence and roles. Many found it challenging to adjust to restrictions as described by Duguay, Gallagher and Fortin [ 63]:

"Regardless of the participant's age, in their eyes, chronic diseases and the numerous associated physical and social limitations evoke old age".

Finally, increasing loss of autonomy and dependency on others were important concepts. Limitations on travel may be caused by no longer being able to drive a car or due to complex medication regimens or side effects. A restriction in the ability to carry out activities of daily living often led to needing help from others. This was linked to interpersonal challenges, for example the impact of MLTCs on family and social networks, both on the nature of the relationship itself and on practical impacts, particularly for the spouse or closest relative. An example was described by Aberg and colleagues [ 52]:

"On one hand, a sense of loss of how life once was is described. The health problems limit the possibilities for what previously made sense in life such as walking, going to the movies, restaurants and concerts, accessing driving vehicles, visiting the grandchildren and the cemetery. "I would like to bake bread. I always did that and cookies ... what fun it was. I can't stand up for that long because of my back. So, no point in thinking about it" "

Investigation and monitoring

Most LTCs require an element of investigation and monitoring, although this is dependent on the condition, for example the monitoring work associated with diabetes is very high. This theme encompasses both self-monitoring, for example patient monitoring of blood sugars, blood pressure readings, insulin dosages, blood test values and side effects from new medications, and predominantly health service-administered disease monitoring (with the need to sometimes attend regular appointments), for example blood tests, multiple diagnostic tests/investigations and the monitoring of specialised medication.

This was illustrated by Gill and colleagues [ 71]:

"Patients also noted poor coordination among providers when multiple medications had to be prescribed and various tests and procedures had to be coordinated. One patient attempted to schedule two imaging appointments from two different providers, but was hindered by the system's inability to coordinate the scans"

Notably, participation in preventive care such as screening can be more challenging for those with MLTCs due to issues such as current poor health, mobility issues and insufficient time and energy. This can lead to non-engagement as demonstrated in Ancker and colleagues [ 53]:

"One man explained why he had not followed up on a potential route to get insurance coverage for the shingles vaccine. "Who wants to go through all that? Who has the time and energy to continue the struggle, especially someone who is chronically trying to deal with everything else they've got to deal with? ... It's hard enough when you're healthy and you're with it, and you're feeling good... When you're not feeling well at all, it's difficult. I don't have the energy. I don't have the time. I don't feel good. I don't want to deal with it." "

Medication work

Polypharmacy is a major source of work (and treatment burden) for patients living with LTCs. The high number of medications taken per day results in complex and possibly confusing regimens, with potentially high cost and a significant time burden for ordering, collecting and taking medication.

This experience was described by Zulman and colleagues [ 94]:

" It's a struggle. It is! It's a huge struggle. Every week I have to put my meds in pill boxes because if I don't do that, with as many different medicines as I'm taking...To be perfectly honest I couldn't even tell you how many pill bottles it really is."

People living with MLTCs also have to cope with significant side effects and drug interactions (both with other conditions and other medications), as demonstrated by both Sand and colleagues and Van Merode and colleagues' [ 29, 86]:

" I know that the day after [she had injected the weekly medication], I'm not capable of doing much. But I do take my medicine, because I respect authorities, and I feel that it helps. But these are the trade-offs to me; on one hand, to feel that it's helping me, but on the other hand, I have to live with the side effects. That's like choosing between plague and cholera. (Female, 46 years)"

"Having to take multiple medications is a major aspect of the treatment burden. Interactions, side effects, and change of brands because of government policy added greatly to the burden patients experienced".

Polypharmacy can have a detrimental impact on the ability to attend activities, make plans and travel. Medication adherence can be affected by complex regimens, but also by fear of side effects, drugs causing harm, stigma, required dietary changes and medication shortages. These concepts are discussed by Sav and colleagues' [ 87]:

"Some participants described the frustration they experienced about the inconvenience of having to rely on medication, especially when it interfered with daily activities, such as shopping and employment. Many participants also felt uncomfortable about their treatment, a finding that appeared to be related to the stigma associated with medication use and chronic illness. Male participants, particularly those from a CALD [Culturally and linguistically diverse] background, commented about how the use of medication reminded them of their illness. They often seemed troubled by the idea of having to rely on medication for the rest of their lives"

Health service and administration

This theme relates to the work specifically concerning health services (part of treatment burden), most notably the high number of appointments required for people living with MLTCs, often with different doctors and in different departments and/or healthcare facilities. There is a clear negative impact for patients with MLTCs due to fragmentation of care with services focusing on single diseases, as illustrated by Ploeg and colleagues [ 80]:

"Older persons with MCC and caregivers described challenges receiving services from multiple providers who focus on a single disease or single aspect of their health, and do not see them as a whole person. Care is often experienced as disjointed and lacking coordination".

This phenomenon was also noted in Morgan and colleagues [ 76]:

"On the one hand individual disease management promotes efficiency and continuity of care, for example through the scheduling of subsequent follow-up appointments; on the other hand it may result in the neglect of other co-morbidities and these not being discussed at the clinic".

Multiple health relationships and a lack of continuity of care both lead to a substantial amount of 'invisible' work carried out by patients relating to managing personal health information, for example the transfer of information between providers, keeping a list of medication for when it is needed and managing errors [ 53]. Ancker and colleagues' study describes [ 53]:

"the work they performed to manage records or correct their information was generally invisible to their health care providers. This invisibility raised new challenges: patients found these tasks interfering with their regular illness work and felt they had nowhere to turn for assistance. "Nobody wants to help you," said one".

"One of the biggest issues facing patients is the enormous amount of difficult, frustrating, and emotionally tiring work involved in addressing informational errors. Because this work is conducted outside of the relationship with any individual health care provider, it is often invisible to their health care providers. Furthermore, because this invisible work arises from complexities in medical care and medical coverage, it seems likely to fall most heavily on those with the most encounters with the medical system, constituting a systemically regressive tax on illness".

Along with communication and relationship issues with healthcare providers, other sources of work were practical issues related to travel and transport. These included time burden and cost, the required planning and an acknowledgement of the increased impact on those in rural areas. Access issues and waiting times were also described, together with the impact of hospitalisation with the link to changes in medication and the impact on others. For some, the cost and difficulty associated with appointments led to non-attendance, linking to the work demonstrating an association between people who miss appointments and high treatment burden and was illustrated by Eckerblad and colleagues [ 64, 95]:

"All were dependent on support in one way or another from health care. Different diseases resulted in visits to several different health care departments for checkups. Even though they knew they ought to go and felt guilty about not doing so, the effort to plan transportation and wait their turn in line just took too much energy".

Symptom work

This theme relates to the wide range of symptoms experienced by people living with MLTCs. Key symptoms emerging from this evidence synthesis were pain, physical limitations/mobility problems and fatigue/exhaustion/tiredness/lack of energy, as illustrated by the two following extracts from Coventry and colleagues and Duguay and colleagues [ 61, 63]:

"This was highlighted by data that illustrated the way in which multimorbidity had imposed severe restrictions on mobility, more so than with the effects of single conditions"

"Not all diseases have the same significance in the overall multimorbidity experience. Those that involve pain are more distressing than those whose symptoms are more difficult to detect"

In total, over one hundred individual symptoms were expressed by participants of the studies.

Other symptoms included problems with sleep, low mood, problems with eyesight and hearing, respiratory/breathing problems, balance problems/falls, weight change (gain or loss), decreased physical strength, cough, reduced cognitive ability and nausea. Patients did not always seek medical help for their symptoms as the following extract from Clarke and Bennett illustrates [ 60]:

" so I haven't seen my doctor for over a year. Mind you I don't really want to. There's nothing that she can do. My spine is extremely painful but there's nothing they can do with that..."

Emotional work

This large theme encompasses the significant emotional impact of living with MLTCs, both due to the direct impact of MLTCs on individuals and additionally due to the recognition of how MLTCs impact on others as described by both Sand and colleagues and Shin and colleagues [ 86, 89]:

"What bothers me the most is that I don't want to be a burden to others. I don't want to be a hassle to anyone. No one should have to take my needs into consideration. That is hard to accept."
"most participants in this review experienced psychological instability related to feelings of guilt regarding receiving care from their families to self-perceptions of being a burden to their informal caregivers and a sense of meaninglessness".

Commonly described concepts included worry, frustration, guilt, loneliness and feeling isolated, sadness, feeling overwhelmed, anger, despair, embarrassment/shame/disgust (for example due to reduced ability to work, change in appearance), fear, stress and feeling powerless. Eckerblad and colleagues describe this emotional work [ 64]:

"Feeling worried, nervous or sad made it hard to sleep, and some reported problems of being so emotional and easily moved that they could suddenly start crying in an uncontrolled manner".

Many individuals also described a desire for independence and feelings of loss, as described by O'Brien and colleagues [ 78]:

"She described how she struggled to make sense of the changes that her many illnesses had brought. When she was able to be active around the home, she found it helped distract her from feelings of anger (that her life so little resembled that of her peers), grief (that her illness had resulted in so many losses, particularly paid employment which had been an important part of her identity), and fear (about her health and how it would impact everyday life work in future)".

Other participants described more positive emotions such as hope and acceptance as described in Clarke and Bennett [ 58]:

"For example, a 77-year-old man who had arthritis, back problems, diabetes, heart disease, kidney disease and a thyroid condition expressed his resignation in this way: 'That's life .. . I'm not happy with it but if it has to be that way, it has to be. That's all there is to it. You just accept it and move on.' "

Financial work

This theme details the impact that MLTCs has on finances. MLTCs leads to a reduced ability to work, thus reducing income and limiting opportunities. Additionally, the cost of medications, consultations, self-management (for example diet, gym membership, chiropractor) and travel (transport and parking costs) are a substantial financial burden for many. Having MLTCs resulted in more consultations and often more medication, thus those with MLTCs had increased healthcare costs, as described by Hardman and colleagues [ 72]:

"Increased healthcare costs were often complicated by loss of income. As multimorbidity increased, functional capacity declined, with ten of the thirteen participants reporting that their health conditions had forced them to stop work".

In several countries, insurance coverage, out of pocket payments/copayments and the administration required for insurance and reimbursement led to further work for patients. Medications not taken, delayed treatment, and consultations not attended all occur as a direct consequence of cost. The financial consequences of MLTCs also led to a need to balance healthcare costs with other expenditure, and the significant impact of this on many other aspects of daily life, for example the ability to pay bills, afford family and leisure activities, and implications on savings, debt and housing, as illustrated by Larkin and colleagues [ 75]:

"Participants also discussed losing their savings, losing their home and accruing high levels of debt in order to meet the high costs associated with multimorbidity."

" All my money goes on my health aside from basic bills. I do not buy treats, clothes, haircuts, toiletries, things for the house "

Socioeconomic deprivation shapes the experience of multimorbidity. For example, participants described how benefits were insufficient for financial security with some being dependent on family members. Morgan and colleagues describe [ 76]:

"For women in the Greater Accra Region, there was an evident reliance on the health care system, although this was met by inconsistent coverage under the NHIS. Despite the availability of a health insurance package, the majority of women experienced a financial burden related to meeting their health care demands and were dependent on family and community members to offset this".

Finally, a negative social environment can directly impact on the ability of people to cope with MLTC, as described by O'Brien and colleagues [ 78]:

"Participants' accounts implicitly reveal the effects of deprivation (which included descriptions of having to manage many problems and having access to few social and material resources), and how these were perceived to exacerbate their struggles to manage, especially when combined with a mental health problem".

Confidence in findings

For our GRADE-CERQual summarised review finding 'People living with MLTCs do not just experience one type of work, but multiple, and these occur in differing combinations depending on the nature and combination of conditions and other factors' we identified 'No/Very minor concerns' for methodological limitations, coherence, adequacy, and relevance leading to 'High confidence' in our finding.

We had 'High confidence' in all other findings except 'Biographical work-the impact of MLTCs on self-perception and life narrative' and 'The impact of having MLTCs on time, including the time lost to healthcare activities, lacking time for medical interaction, time spent on administrative activities, time undertaking self-care, balancing with other activities such as work' (both 'Moderate confidence' with 'Minor concerns' for adequacy because these themes were not present in all studies). We additionally had 'Minor concerns' regarding relevance for 'Financial work as a theme of burden' because of the variation in study populations, geographical locations and health and social care systems represented in the different studies, and for 'Learning and adapting work as a theme of burden' because the need to adapt and learn varied by factors such as the specific long-term conditions being considered and the differing characteristics of the study participants (e.g. age, gender, socioeconomic status). Further details are provided in Supplementary Table 3.

Coverage of themes by included papers

All papers covered between five and eight of the themes (Fig. 4).

Eighteen papers covered all eight themes. Two themes (accumulating and complexity and learning and adapting) were covered by all 46 studies.

PPI in the studies

Forty-one of the included 46 papers had no PPI involvement reported and there were no clear PPI contributor co-authors. Only one GRIPP2 reporting checklist was present (22 papers published pre 2017). Reporting of PPI did not involve public contributors, often lacked detail and provided no evidence of the process or methods used.

Discussion

Summary

This evidence synthesis identified that the impact of living with MLTCs is experienced as a multifaceted and complex workload summarised by eight key themes. These comprised the work of accumulation and complexity, learning and adapting, finance, medication, investigation and monitoring, health service and administration, symptoms and emotions. There was evidence that people with MLTCs do not just experience one theme of work, but multiple, and the impact of the specific lines of work are dynamic and not fixed. People with any combination of MLTCs may experience aspects of work in all eight themes, but the degree to which these are experienced is influenced by a wide range of factors that go beyond simply the particular combination of conditions concerned and are patient context specific, for example financial circumstances, ability to work and certain symptoms. There is very limited information about the experience of people with MLTCs in low- and middle-income countries. People with MLTCs are treated as somewhat homogenous populations with ethnicity reported in only a minority of studies and differences in experience between sexes, those of different socioeconomic status or ethnicity relatively under-explored. Most included papers in this review had no PPI involvement.

Although grouped together for this study, each paper included in this review studied a unique cohort with, for example, different age ranges, levels of socioeconomic status and different living environments. Certain themes, for example financial work and health service and administration, were more prominent in some studies due to either the health system context or study population, but most themes of work were experienced in all contexts. An important message in several studies was the need for a holistic approach to management, given the multidimensional and 'whole life' impact of living with MLTCs. This contrasts starkly with the frequently fragmented nature of health systems experienced by people living with MLTCs.

Strengths and limitations

Our study had several strengths, one of which was the extent of PPI co-production and involving PPI colleagues living with MLTCs in line with NIHR guidance [ 96]. Others included the deliberately broad search strategy, the large number of papers screened for inclusion, the substantial number included for data synthesis, and representation from many different countries. We also followed the ENTREQ guideline to ensure transparent reporting and the GRADE-CERQual approach to assess the trustworthiness of our findings [ 34, 50].

There were also several limitations. It is possible that the use of a qualitative filter may have restricted the search, we were not able to include non-English language studies, and the second coder only undertook line by line coding for 10% of papers. To balance this, extensive discussions about codes and themes were undertaken within the study team. A further limitation is the possibility that some codes were overrepresented due to being present in both the original studies and in a review paper, or in duplicate populations within our included primary research studies. However, it is worth noting that no studies were included in more than one review paper and we did not apply any weighting to our themes.

There were several ways in which we deviated from our planned protocol, some of which we regard as strengths and some as limitations [ 35]. Based on feedback from PPI colleagues we refined our research questions and extended the search from primary care patients to include all patients, as we recognised that some may be exclusively or predominantly managed in secondary care. We also considered how the healthcare system currently impacts on the lived experience of MLTCs as part of the holistic experience, rather than as a standalone research question. These were strengths.

Other protocol deviations were potential limitations. Extending our exclusion criteria to omit studies with fewer than 50% of participants living with three or more LTCs may have missed some relevant insights as may the exclusion of studies of people living with only two conditions. This was, however, both a pragmatic suggestion due to the very high number of studies identified, and a deliberate decision made following PPI advice as we were particularly interested in the complexity that arises when juggling three or more LTCs. Some of our findings may therefore not be generalisable to those living with two LTCs, though we recognise that the lived experience of MLTCs is very context-specific and depends on which LTCs a person is living with.

Protocol deviations that are arguably neither strengths nor limitations include the use of CASP framework rather than CORE-Q for quality appraisal of studies and the fact that we have not yet focused on aspects related to inequalities or prevention. The MELD-B research collaboration is currently investigating which aspects of burden and complexity may be identifiable in routine primary care data and will consider these aspects during further work [ 33].

Comparison with existing literature

In this review we generated many similar concepts to previous studies, including the demands imposed by managing medication and attending multiple appointments [ 13, 19, 25, 26, 27, 28, 29, 30, 31, 32]. We also developed the idea of 'work' further by broadening the concept of impact and burden towards a more holistic model that incorporates the full experience of living with MLTCs, including emotions as distinct entities that might be experienced to widely differing degrees depending on the LTC combination and other factors. Work was the preferred term over 'burden' by the PPI contributors in this project as it recognises and legitimises the effort that people living with MLTCs undertake. This relates to the previous work of Hochschild who described the work of managing emotions including reference to 'techniques of emotion work' (these being cognitive, bodily and expressive) and their relation to morality and social rules [ 97].

Previous studies, as described above, have developed models that describe the burden for patients with LTCs including the 'three lines of work' model, the Cumulative Complexity Model and the Burden of Treatment framework [ 11, 12, 13, 67, 68]. A 2017 systematic review focussing on treatment burden among people with MLTCs included nine studies reflecting many similar concepts to our study, reflecting the complex and interacting nature of factors influencing burden [ 15]. A Danish population-based study of symptom burden that included 5,652 people with MLTCs found that, on average, each additional condition led to one more symptom, a third more impairment of daily activities (up to three conditions), and a third more worry about symptoms (up to three conditions) [ 9].

Our study generated the concepts described in these models, for example our medication work and healthcare and administration themes relate closely to aspects of burden of treatment theory, but we have added new themes to the overall experience of living with MLTCs. We generated emotional burden as an additional major area of work for people. We included symptom work as a separate theme, and also generated 'investigation and monitoring' as separate to other aspects of healthcare. Our 'learning and adapting' theme broadens out Rosbach et al.'s findings on diet and exercise and lack of knowledge concepts. [ 15] We additionally generated a novel 'accumulation and complexity' theme which describes the greater amount of work experienced by people due to having more than one LTC. This builds on the cumulative complexity model and is greater than simply the work of each separate LTC added together, arising due to issues such as interactions, unpredictability and the need for prioritisation by patients [ 15]. The variable nature of the work associated with MLTCs is in line with previous research in both the US and the UK demonstrating a change in treatment burden over time among people living with MLTCs [ 98, 99].

Our generation of unpredictability/uncertainty as part of our accumulation and complexity theme also links to Etkind et al.'s model of uncertainty for people living with advanced MLTCs. [ 66] The domains of 'appraising and managing multiple illnesses', 'fragmented care and communication', 'feeling overwhelmed' and 'continual change' were all concepts in our work themes [ 66].

Experience of MLTCs varies between different combinations of conditions but much of the work is common to many (or all). Our themes of work provide a structure that enhances previous models and frames possible approaches to solutions.

This review was not limited to the UK and this enhances its generalisability, though we recognise that some specific aspects of work were linked to the context of individual studies. For example, financial work has a higher impact in some health systems than others, such as the US (e.g. for those uninsured) and in lower income countries. However, it is important to note that financial work was expressed as an important issue in all contexts, for example in studies highlighting the costs of medications (Ghana, Australia) [ 67, 87], consultations (Netherlands, Belgium) [ 29] and costs of access (transport) (Ghana, Brazil, Canada, Australia) [ 69, 72, 76, 80, 81].

Relatively few studies focussed solely on people under 65, although 27 studies gave the minimum age of participants as 'under 65' so younger people with MLTCs were represented to some extent.

Ethnicity was not specified in the majority of papers. The socioeconomic status of participants was complicated to interpret, but seven papers appeared to focus specifically on participants from lower income environments and several others included a broad range of participants. Most papers included more women than men.

Some of the commonly included conditions in the qualitative MLTCs studies were diabetes, hypertension, osteoarthritis, depression and cardiovascular disease. Patients living with dementia were sometimes excluded and the experiences of patients with rare conditions were poorly represented. For several studies it was not completely clear which conditions were included.

Implications for research and practice

Our evidence synthesis including eight themes adds to previous work to provide a new language of burden and work for use in future MLTCs research and practice. Consideration of the full breadth of work experienced by people living with MLTCs needs to be brought not only into research, but also into routine clinical care and health system organisation. Further work is needed on identifying how burdensome attributes might be identified in healthcare data, and how these might be applied in practice. There is also a need to better understand which aspects of work are perceived as the most burdensome by whom, and in which circumstances. Linked to this, our findings of the limited PPI involvement in MLTCs studies strongly suggests the need for greater and more transparent involvement. A GRIPP2 reporting checklist has been included for this study (Supplementary Table 4).

In the UK, the need for more joined up healthcare systems is well known. This is an almost consistent problem for patients who, not only need to attend multiple appointments for different conditions, but have the additional work of often needing to coordinate their own care and support communication between different systems. There is a paucity of evidence regarding interventions for care integration and their effectiveness [ 100]. Integrated Care Systems have to date shown limited evidence for the benefit in reducing patient workload and this needs to be a priority [ 101]. Indeed, a recent House of Lords (the upper house of UK Parliament) Integration of Primary and Community Care Committee has identified barriers to care integration and has made recommendations [ 102]. Continuity of care, which has been shown to be associated with reduced use of out-of-hours services, admission to hospital and mortality, also continues to be of high importance for patients with MLTCs [ 103].

The findings of our evidence synthesis show that people with MLTCs have to deal with many types of work across different LTCs and therefore suggest that self-management of individual conditions may add to challenges rather than provide help. There is a risk that the response to the person with MLTCs is to push the person towards greater self-management actions for all of the different conditions from which they suffer [ 104]. Despite the well-meaning intention of such endeavours, they may, ironically, lead to greater workload for people, and this workload is very likely to be felt differently among people with varying numbers and severity of conditions and different resources to respond [ 105, 106]. The current system is quick to add treatments and lifestyle actions but slower to coordinate care for people and enact deprescribing activities which could reduce the workload for people [ 107].

There is a need to respond at system level to reduce the workload across the themes generated. Clinical guidelines are urgently needed for people living with MLTCs who do not fit neatly into single disease frameworks. Policies are needed to assist those with MLTCs, for example with medication and travel costs. The emotional and biographical impact of MLTCs needs to be acknowledged and respected in clinical practice and research. Minimally disruptive medicine remains an essential goal [ 108]. Current interactions with heath system are too often fragmented and siloed [ 109, 110]. The sheer number of interactions is highly problematic, especially for those in employment or those who are carers [ 111].

Technological solutions may have a role, for example virtual appointments, coordination between specialties and patient held records, but there is a real risk that this will increase burden of treatment and widen inequalities for groups such as those with greater socioeconomic disadvantage who cannot access technology, those who are homeless, those with English not as their first language, and people with impairments such as vision and cognitive problems [ 94, 112].

Conclusions

The impact of living with MLTCs is experienced as a multifaceted and complex workload involving multiple themes of work, many of which are reciprocally linked. The individual experience of living with MLTCs is determined not only by people's unique combination of LTCs but by the health system they must navigate and their personal context. Much of this work, and the associated impact on people, may not be apparent to healthcare staff and current health services and policies are poorly equipped to meet the needs of this growing population.

Data availability

No datasets were generated or analysed during the current study.

Abbreviations

CASP:

Critical Appraisal Skills Programme

ENTREQ:

Enhancing transparency in reporting the synthesis of qualitative research

FG:

Focus group

GRADE-CERQual:

Grading of Recommendations Assessment, Development, and Evaluation - Confidence in the Evidence from Reviews of Qualitative Research

IMD:

Index of Multiple Deprivation

LMICs:

Low- and middle-income countries

LTCs:

Long-term conditions

MELD-B:

Multidisciplinary Ecosystem to study Lifecourse Determinants and Prevention of Early-onset Burdensome Multimorbidity

MeSH®:

Medical Subject Headings

MLTCs:

Multiple long-term conditions

NIH:

National Library of Medicine

NIHR:

National Institute for Health Research

PPI:

Patient and Public Involvement

PROSPERO:

International Prospective Register of Systematic Reviews

QES:

Qualitative Evidence Synthesis

SD:

Standard deviation

SES:

Socioeconomic status

Acknowledgements

We would like to acknowledge all other members of the MELD-B Consortium and additional PPI contributors who wish to remain anonymous. Authors wish to thank the research librarians at the University of Southampton. In memory of our colleague and friend Mark Ashworth.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study/project is funded by the National Institute for Health Research (NIHR) under its Programme Artificial Intelligence for Multiple and Long-Term Conditions (NIHR203988). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

Author information

Author notes

Mark Ashworth is deceased.

Authors and Affiliations

1. School of Primary Care, Population Sciences and Medical Education, Faculty of Medicine, University of Southampton, Southampton General Hospital, Tremona Road, Southampton, SO16 6YD, UK

Emilia Holland, Kate Matthews, Sebastian Stannard, Nick A. Francis, Charlotte Gooding, Nisreen A. Alwan & Simon D. S. Fraser

2. General Practice & Primary Care, School of Health and Wellbeing, University of Glasgow, Glasgow, UK

Sara Macdonald & Frances S. Mair

3. School of Life Course and Population Sciences, King's College London, London, UK

Mark Ashworth

4. Patient and Public Involvement (PPI) Member, MELD-B Project, Southampton, UK

Lynn Laidlaw

5. Patient and Public Involvement and Engagement, University Hospital Southampton NHS Foundation Trust, Southampton, UK

Kelly Sum Yuet Cheung

6. University Hospital Southampton NHS Foundation Trust, Southampton, UK

Nisreen A. Alwan

7. NIHR Applied Research Collaboration Wessex, Southampton, UK

Nisreen A. Alwan & Simon D. S. Fraser

Contributions

Design and planning of the qualitative evidence synthesis was carried out by SF, SM and EH with input from MA, NF, FM and LL. EH, KM, KSYC, LL, MA and SF conducted the screening. EH, KSYC, SS, MA, CG and SF carried out the quality assessment of papers. Coding was carried out by EH and SF. Analysis discussions involved EH, SF and subject expert SM with further discussions with PPI co-author LL and subject experts FM, MA and NF. EH and SF drafted the paper and prepared the figures. Comments on a first draft were provided by SS, NA, SM, FM, NF, MA, KSYC and LL. LL conducted the analysis of PPI input to the studies. All authors read and approved the final manuscript.

Authors' information

EH, SF FM, NF and MA have experience of caring for people with MLTCs in general practice. FM, SM, MA and SF are academic MLTCs subject experts. LL is a PPI member with personal experience of living with MLTCs. KM is a junior hospital doctor. KSYC is a PPI officer and researcher. SS is a post-doctoral researcher with expertise in lifecourse epidemiology. CG is a public health registrar and previous physiotherapist. NA has a clinical background and is a subject expert in epidemiology, early life and long Covid.

Corresponding author

Correspondence to Emilia Holland.

Ethics declarations

Ethics approval and consent to participate

Ethics approval has been obtained for the MELD-B study from the University of Southampton Faculty of Medicine Ethics committee (ERGO II Reference 66810). A separate application was made for the Qualitative Evidence Synthesis with no further review required.

Consent for publication

This is a secondary analysis of previous qualitative research.

Competing interests

The authors declare no competing interests.

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