The BRACE overarching study
When commissioning two rapid evaluation teams in 2018, the NIHR asked each team to propose a longer-term study to run alongside the programme of rapid evaluation projects. The BRACE team agreed with the NIHR that rather than undertake an additional primary empirical study, we would conduct an overarching synthesis study of our portfolio of evaluations, doing this through the specific lens of people living with multiple long-term conditions. In particular, we explored whether those service innovations in health and social care evaluated by the BRACE team took account of, or were designed with due consideration of the needs of, people with multiple long-term conditions.
The intention was to use an overarching thematic framework deduced from a review of evidence about multiple long-term conditions to undertake detailed and focused synthesis and learning from the BRACE evaluations. We sought to understand what our rapid evaluations of service innovations meant for the specific issues and questions identified by people of all ages living with multiple long-term conditions and needing care and support from health services. This included both prospective exploration in some evaluations of the needs and experiences of people living with multiple long-term conditions, and retrospective study of our full portfolio of rapid evaluations to understand how our work had (or had not) accounted for, or revealed insights into, the implications of service innovations for this population group.
The decision to focus the overarching study on people living with multiple long-term conditions was informed by work undertaken by the BRACE team in discussion with patient and public involvement (PPI) and other stakeholders to identify a set of thematic priorities to underpin the team’s work. Service innovations for people of all ages with multiple long-term conditions was the highest-rated topic (of 20 on the longlist) in our initial BRACE prioritisation process undertaken in summer 2018 using James Lind Alliance principles and expert facilitation. More information about this process is set out in Chapter 3.
Defining and mapping ‘multiple long-term conditions’
The terms ‘multiple morbidity’ and ‘multimorbidity’ are widely used in academic literature but are sometimes criticised from a PPI perspective as being too much akin to technical jargon. In this report, we generally refer instead to ‘living with multiple long-term conditions’, although occasionally ‘multimorbidity’ will occur where that is the term used in the source material being referred to. In this report, we use the terms ‘living with multiple long-term conditions’ and ‘multimorbidity’ interchangeably.
The definition of living with multiple long-term conditions is in essence straightforward, but numerous variants exist. Skou et al. summarise the range and present several of these.11 Our focus is on people who live with at least two long-term conditions. This is the group of the population with an enduring need for at least one other condition to be taken into account whenever they are in contact with healthcare services. For the purposes of our overarching study, we start from the National Institute for Health and Care Excellence (NICE) definition of multiple long-term conditions, or multimorbidity, as ‘the presence of two or more long-term health conditions’, which NICE states as including:
- defined physical and mental health conditions such as diabetes or schizophrenia
- ongoing conditions such as learning disability
- symptom complexes such as frailty or chronic pain
- sensory impairment such as sight or hearing loss
- alcohol and substance misuse. 12
The proportion of the population in the UK that is living with multiple long-term conditions is uncertain but large. The Richmond Group of Charities has reported estimates ranging from 15% to 30% of the total population13 and a more recent study suggests that it could be as much as 53% of adults in the UK.14 People living with multiple long-term conditions are likely to have a disproportionately high demand for health care; hence at least a large minority, and possibly the majority, of NHS activity is for people living with multiple long-term conditions. Prevalence increases with age, to the extent that there are few over-80s who do not have multiple long-term conditions,14 but there are large numbers of people in all age groups living with two or more long-term conditions. Progression from single to multiple long-term conditions is much more likely, and happens at a younger age, for individuals from socioeconomically deprived backgrounds than for others, meaning that there are significant inequalities in when people acquire, and how long they have to live with, multiple long-term health conditions.14,15 People from several ethnic minority groups in the UK are at increased risk of having to live with multiple long-term conditions (after adjusting for age and sex) and adults from sexual and gender minority populations have a greater risk of living with multiple long-term conditions even after adjusting for socioeconomic status and ethnic group.16,17
The possible number of combinations of long-term conditions is vast and it is essential not to think of people in this situation as having uniform requirements. However, people with whatever combination of multiple long-term conditions are known to be more intensive users of NHS services and likely to have poorer life expectancy and lower quality of life than other members of the population.13,18 A systematic review of the lived experience of mental and physical multimorbidity found that ‘the phenomenology of multimorbidity is experienced as a complex state that goes beyond counts of conditions and symptom burden and incorporates psycho-social problems played out against a backdrop of uncertainty and constant flux’.19 The World Health Organization (WHO) describes people with multiple long-term conditions, compared to other members of the population, as facing:
more frequent and complex interactions with health care services leading to greater susceptibility to failures of care delivery and coordination; the need for clear communication and patient-centred care due to complex patient needs; demanding self-management regimens and competing priorities; more vulnerability to safety issues …20
Multiple long-term conditions in NHS policy and research
Caring for people living with multiple long-term conditions is a high-profile issue in NHS policy and practice. It was a major theme in the NHS Long Term Plan21 and the Academic Health Science Network, NIHR and NHS England report on priorities for innovation and research.22 In July 2019, the Academy of Medical Sciences, NIHR, Department of Health and Social Care (DHSC), Medical Research Council and Wellcome Trust jointly declared ‘[m]ultimorbidity is recognised as an important priority across all our organisations and we all take a special interest in it’.23 In a similar vein, research by healthcare charities has highlighted the complex issues faced by patients in a health system that is largely organised around single diseases rather than the needs of people living with multiple long-term conditions.24
The NIHR, in ‘Best Research for Best Health: The Next Chapter’, identified ‘improving the lives of people with multiple long-term conditions through research’ as one of its seven areas of strategic focus.25 This has been further underlined within the DHSC’s updated ‘Areas of Research Interest’ where the management of multiple long-term conditions forms part of Priority One (early action to prevent poor health outcomes).26
Research programmes and funding typically do not yet reflect this desire to embrace the needs of people with multiple long-term conditions, as noted by Lamont et al.: ‘Research systems have reinforced these distortions, with a focus often on single condition research, typically excluding people with comorbidities as trial participants’.27
Much of the interventional research has been explanatory randomised trials, requiring ideal conditions under which to demonstrate a beneficial effect and thereby excluding patients with multiple long-term conditions to control confounding. But there is growing recognition of the need for pragmatic designs in ‘real-world’ settings to inform organisational decision-making.28
Aims, objectives and research questions of the BRACE overarching study
Following a structured and collaborative process of prioritising topics for evaluation (see Methods), the BRACE team concluded that living with multiple long-term conditions would be a very relevant and appropriate way of framing, interrogating and synthesising the series of evaluations undertaken over the 5 years of funding for the Centre.
The aims for this overarching study were:
- to build a coherent body of learning about service innovations in primary and community settings for people of all ages with multiple long-term conditions, focused on those questions that matter most to those living with multiple long-term conditions
- to develop methodological insights about how rapid evaluation approaches can be used to inform the scoping, testing and implementation of service innovations for people living with multiple long-term conditions.
We sought to do this by connecting the BRACE series of evaluations within the single overarching theme of living with multiple long-term conditions, to distil insights for policy and practice beyond what is possible with discrete rapid evaluation studies.
Specifically, we had these three objectives:
- to build cumulatively into later evaluations what we had learnt from earlier projects about avenues related to multiple long-term conditions identified as requiring further research
- to focus on what is consequential for health and social care services from the existence of multiple long-term conditions within one person, as distinct from caring for an array of patients each living with only one condition
- to propose methodological developments in the practice of rapid evaluation of service innovations for people living with multiple long-term conditions, by comparing and reflecting on our experience across individual studies in the BRACE portfolio.
To fulfil these study aims and achieve the project objectives, we determined a set of six overarching research questions (ORQs) for this study:
- ORQ1: Do people living with multiple long-term conditions and their carers have specific health and care requirements, including for service co-ordination, that people with single conditions, and their carers, either have to a lesser degree or not at all?
- ORQ2: To what extent and how are these requirements met by commissioning and provision of health and care services? Who takes overall responsibility for the totality of care and support?
- ORQ3: How effectively and cost-effectively are these requirements being met?
- ORQ4: To what extent are people with multiple long-term conditions being supported to design, co-ordinate and manage their own care?
- ORQ5: How do services aimed at people with multiple long-term conditions affect inequalities in access to care and inequalities in health, and how are these services’ impacts affected by inequalities (of all kinds)?
- ORQ6: What can we learn from synthesis of a set of rapid evaluation studies about the health service delivery and organisational outcome measures that are important to people living with multiple long-term conditions and their carers?
The BRACE portfolio of evaluations is set out in Table 1.
We developed a typology of these evaluation projects to inform how to use them for analyses of multiple long-term conditions, along with a thematic approach that drew on two major studies of multiple long-term conditions in health services (see Table 2).
| Type 1Care of people with multiple long-term conditions is one factor in the evaluation project but not the principal focus of the initial evaluation | Type 2Care of people with multiple long-term conditions is the principal focus of the evaluation from the outset | |
|---|---|---|
| 1A. Multiple long-term conditions may be one aspect among several but not the focus | 1B. Prompted by findings from the initial study, a follow-up includes a focus on multiple long-term conditions | |
| Primary Care Networks – evaluation of early developmentVertical integration of acute hospitals with GP practices – Phase 1Children and Young People’s Mental Health TrailblazersCOVID Oximetry at Home main evaluationCOVID Oximetry at Home in care homesAI and social careWomen’s reproductive health hubs | Vertical integration of acute hospitals with GP practices – Phase 2 | Telephone-first primary care for people with multiple conditionsDigital-first primary care as experienced by people with multiple conditions and their carers |
The methods we used in the overarching study are set out in the next section of this report, followed by descriptions of the thematic framework adopted, the typology of evaluations, and how these were used to undertake the cross-project analysis and develop insights and implications related to service innovations for people living with multiple long-term conditions.