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Abstract

Introduction

Multimorbidity is associated with adverse clinical outcomes, including increased symptom burden and healthcare utilisation, particularly towards the end of life. Despite this, there is no accepted method to identify the point at which individuals with deteriorating health due to long-term conditions are nearing the end of life or might benefit from a palliative care approach – conceptualised as ‘Advanced Multimorbidity’. This scoping review explored how Advanced Multimorbidity is described and operationalised within the literature.

Methods

Multiple electronic databases and Grey Literature sources were searched following scoping review frameworks. Two reviewers independently performed screening and data extraction. Content analysis was used to examine the different descriptions of Advanced Multimorbidity. Stakeholder consultations were undertaken with clinicians, academics and public participants. Patient and public involvement was separately integrated throughout this review from conceptualisation, design and reporting.

Results

Forty-four different descriptions of Advanced Multimorbidity were identified from 38 publications. These varied in terms of the clinical conditions and descriptors used. Eighteen descriptions relied on a single indicator to identify Advanced Multimorbidity; 24 used a multidimensional approach. Stakeholder consultations highlighted the need for descriptions that are user-friendly and actionable.

Conclusion

The lack of a standardised definition of Advanced Multimorbidity risks variance in clinical and research practice, potentially affecting patient care. A consensus on defining Advanced Multimorbidity would enable better identification of patients who could benefit from a palliative care approach, ensuring more consistent and person-centred care, as well as supporting research and policy development.

Keywords

Multimorbidity scoping review end of life palliative care ageing

Introduction

With the rising prevalence of people living with two or more long-term conditions, more commonly referred to as multimorbidity, there are concerns that healthcare services organised by specialism are not equipped to meet the needs of this growing population.^1,2 Multimorbidity is associated with a range of adverse health outcomes, lower quality of life and increased utilisation of healthcare services throughout the life course.^3–6 With increasing numbers of people living with multimorbidity, it follows that many more people are dying with and from multimorbidity.⁷ This population experiences a wide range of symptoms, significantly impacting their quality of life as their health deteriorates.^8,9 Healthcare utilisation towards the end of life for people with multimorbidity has been shown to be fragmented, punctuated with frequent unscheduled care contacts, and costly.^10–12 The seemingly unpredictable nature of the multimorbidity illness trajectory makes identifying the end-of-life period challenging. A lack of consistent and proactive identification risks denying this group of patients and their caregivers honest conversations about their mortality and the opportunity to participate in future care planning with a view to aligning their care with what matters most to them – a key component of a palliative care approach which can be delivered by generalists and specialists alike.^13,14

Increasingly it is being demonstrated palliative care is no longer exclusively a model of care for those at the very end of life, with a growing evidence base of the benefits of earlier integration of palliative approaches.¹⁵ However, the optimal timing of when to integrate palliative care into the care of those with multiple health conditions remains unclear. Such identification and action could not only improve the appropriateness of care received by people whose life expectancy is likely to be limited, through the avoidance of potentially harmful, ineffective or unwanted treatments; but may also, from a health service perspective, increase the capacity to provide curative and preventative interventions for those more likely to benefit. In order to make a difference to the quality and nature of care that people with multimorbidity experience towards the end of life, we must be able to reliably identify the time when a palliative care approach should be considered and offered.¹⁶

At present, there is no accepted definition to support clinical identification of when people with multimorbidity would benefit from a palliative care approach or are approaching the end of their lives. Advanced Multimorbidity is a term that could reasonably describe an individual with progressively deteriorating health due to their multiple long-term conditions.¹⁷ Understanding how best to identify people with Advanced Multimorbidity would allow for a more reliable and coordinated approach to care which optimises quality of life with simultaneous planning for future deterioration.

Scoping review aim

This scoping review aimed to collate the available evidence on how people with Advanced Multimorbidity are described within the literature, with a view to identifying gaps in knowledge and making recommendations for future research.

Methods

This scoping review adhered to the Arksey and O’Malley framework for scoping reviews while referencing the Joanna Briggs Institute guidance and updates from Levac et al. – including refinement of the research question, ensuring appropriate expertise within the review team, and incorporating a more robust stakeholder consultation.^18–20 It is reported in accordance with the Preferred Reporting Items for Systematic Review and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR).²¹ The protocol for this review has been published.²²

Scoping review methodology was chosen for this topic, given its role in conceptual mapping in healthcare, particularly in areas without universally agreed definitions.²³ In accordance with the scoping review guidance,^18–20 this review followed the five stages detailed below.

Stage 1 – Identifying the research question

Advanced Multimorbidity was operationalised as the time period when the care of people with multimorbidity might usefully begin to transition from aiming to reverse or treat chronic conditions alone to encompass alleviating suffering and addressing multidimensional needs – in line with a ‘palliative care approach’.¹⁶ This description of Advanced Multimorbidity is in accordance with research into other advanced illnesses^24–26 and aligns with previously described definitions of Advanced Multimorbidity.^17,27

Inclusion and exclusion criteria were developed using the Population-Concept-Context model²⁰ – Table 1. Studies were excluded if the primary focus was a primary index condition and/or comorbidity, as the former suggests a more specified single disease-focussed approach; whilst multimorbidity suggests a person-centred approach for individuals with multiple long-term health conditions.²⁸ For research papers, only peer-reviewed, published articles were included to improve the quality of the review, as quality assessment is not a routine part of scoping review methodology.¹⁹ All study types were considered, including editorials and case studies, as it is recognised that these often capture details of current clinical practice that may not be represented in research.

Table 1.

Inclusion & exclusion criteria.

Inclusion	Exclusion
Population
Adults (>18) with multimorbidity (≥2 health conditions) or their carers or healthcare providers	Studies focusing on one index condition Studies focusing on comorbidity
Concept
Descriptions of multimorbidity in a terminal phase of the illness experience	Studies related solely to prognosis No clear description for advanced multimorbidity in the study/report
Context
All settings and countries Original research articles and review articles	Unpublished research Not English language

Stage 2 – Identifying relevant studies

A search strategy was developed collaboratively with the University of St Andrews library service – Supplemental File 1. This comprised search terms relating to multimorbidity, advanced illness and palliative care. The databases Medline, EMBASE, CINAHL, Scopus and PsychInfo were searched for published articles. A Grey Literature search took place to identify unpublished work, indexed theses, clinical guidelines and policies. Databases were searched from inception through to date of first search (22^nd May 2023). Searches were updated on 11^th March 2024. Searches were limited to the English language. Forward and backward citation searching was performed in all final included reports.

Stage 3 – Study selection

Searches were combined and deduplicated using EndNote software. Titles and abstracts were independently screened by two authors (SPB and either LM or DW). All full texts were independently reviewed by SPB with secondary review by PB, LM or DW. Any discrepancies were reviewed by a third reviewer and discussions held to reach consensus.

Stage 4 – Charting the data

Data were extracted from each included report by two independent reviewers (SPB and PB, LM or DW) into an Excel spreadsheet, inductively. This comprised details of the citation, design and population as well as the description of Advanced Multimorbidity derived from the report.

Stage 5 – Collating, summarising and reporting the results

Study characteristics were descriptively reported. Content analysis allowed for analysis of descriptions across different source material types (research studies and Grey Literature) to make reproducible and valid inferences.^29,30 An inductive content analysis approach was chosen as this allows for categorisation when there is limited prior knowledge about the phenomenon of choice, in this case, a lack of definition of Advanced Multimorbidity.³⁰ The content analysis process is described in Supplemental File 2.

Stakeholder consultation

Stakeholder consultations are now seen as a crucial component to scoping reviews.¹⁹ Consultation exercises were held with clinicians, academics and public advisors to interrogate the initial findings of the review and to develop some consensus around concepts of Advanced Multimorbidity and the utility of these. These exercises included:

• Clinicians and academics consulted during a 2024 Academic Departments of General Practice in Scotland (ADEGS) conference presentation using electronic surveys to prompt discussions during and after the presentation.

• An online focus group with our Public Advisory Group, comprising of six public advisors with a variety of lived experiences as bereaved caregivers, to ensure that the research was meaningful to their lived experiences.

Both stakeholder events involved the lead author (SPB) presenting the scoping review findings and asking delegates to provide feedback, followed by open discussion. Findings were brought to wider scoping review team meetings which included Public Advisory Group members, to drive the focus of the analysis and interpretation.

Patient & public involvement

In addition to the stakeholder consultation exercises undertaken, the Public Advisory Group for this project contributed to designing the review question, commented on and helped to shape the reporting of the review results and contributed to the manuscript – with one member (PC) listed as a contributing author on behalf of the group.

Results

Study selection

A total of 10,316 unique publications were identified – 9,509 by literature search, 801 by Grey Literature search and 6 by citation searching. After title and abstract screening, 323 publications remained. Full-text review led to a total of 38 final included publications (Table 2), which contained a description of Advanced Multimorbidity. This process is detailed in the PRISMA flow chart (Figure 1).

Table 2.

Study characteristics.

First author surname and year	Title	Continent of study	Article methodology	Aim of article
Amblas-Novellas, 2021	Frailty degree and illness trajectories in older people towards the end-of-life: A prospective observational study	Europe	Quantitative	“In this study, aimed at improving the care of end-of-life older people, we assessed the degree of frailty in a geriatric cohort with different advanced diseases and its relationship with end-of-life illness trajectories and survival.”
Bekker, 2022	Advance care planning in primary care: a retrospective medical record study among patients with different illness trajectories	Europe	Quantitative	“Our aim was to examine the documentation of ACP for patients with cancer, organ failure and multimorbidity in medical records (as a proxy for ACP application) in Dutch general practice.”
Bernabeu-Wittel, 2023	Competences of internal medicine specialists for the management of patients with multimorbidity. EFIM multimorbidity working group position paper	Europe	Editorial	“This position paper proposes a set of emerging and re-emerging competences for internal medicine specialists, which are needed to optimally address multimorbidity now and in the future.”
Bone, 2016	Developing a model of short-term integrated palliative and supportive care for frail older people in community settings: Perspectives of older people, carers and other key stakeholders	Europe	Quantitative	“We aimed to build consensus on three key components of the model (of short term integrated palliative care): Potential benefit; timing of delivery and integrated professional working practices. Objectives were to elicit and synthesise perspectives from older people, carers and other key stakeholder to inform model development prior to a feasibility evaluation in clinical practice”
Calam, 2011	The role of specialist palliative care in managing patients with multimorbidity	Europe	Case report	“This case report describes a patient with multiple morbidity resulting from complicated type 2 diabetes, psoriatic arthritis and abdominal surgery. It highlights the importance of specialist palliative care services in meeting his complex holistic care needs.”
Clarke, 2012	‘The calendar is just about up’: Older adults with multiple chronic conditions reflect on death and dying	North America	Qualitative	“This article examines the ways in which older adults with multiple chronic conditions talk about and prepare for death and dying”
Cohn, 2018	Advanced serious illness, multimorbidity, and multibeneficence: The role of communication	North America	Editorial	“In this commentary, I will be focusing on 3 perspectives: 1) a preterminal phase of multimorbidity that is indicative of that loss of reparative or even homeokinetic properties, known by some as “advanced serious illness” 2; 2) the manifestations of advanced serious illness multimorbidity that, using the same networks that connect into the patient, are signs of this syndrome at the levels of the immediate family/friend social network, the broader community, and society at large; and 3) the potential for these same networks that transmit pathological forces to convey the positive effects of therapeutic interventions in a scale‐free manner, with a focus on how conversation can lead to what I’m calling “multibeneficence.”
Dahlqvist, 2019	Does comprehensive geriatric assessment (CGA) in an outpatient care setting affect the causes of death and the quality of palliative care? A subanalysis of the age-FIT study	Europe	Quantitative	“Does comprehensive geriatric assessment (CGA) affect the causes of death and the quality of palliative care when patients receive care at the end of life when in an outpatient care setting compared to usual care?”
De Decker, 2014	Do not resuscitate orders and aging: Impact of multimorbidity on the decision-making process	NA	Review – systematic	“To systematically review and quantitatively synthesize the evidence connecting DNR orders with multimorbidity in older patients.”
Etkind, 2022	Total uncertainty: a Systematic review and thematic synthesis of experiences of uncertainty in older people with advanced multimorbidity, their informal carers and health professionals	Australasia, Europe, North America	Review - systematic	“We aimed to identify and synthesise systematically the experience of uncertainty in advanced multimorbidity from patient, carer and professional perspectives.”
Evans C, 2021	Community-based short-term integrated palliative care for older people with chronic noncancer conditions: A randomised controlled mixed method trial	Europe	Mixed methods	“To evaluate the impact of the short-term integrated palliative and supportive care intervention for older people living with chronic noncancer conditions and frailty on clinical and economic outcomes and perceptions of care”
Evans J, 2021	Building capacity for palliative care delivery in primary care settings: Mixed-methods evaluation of the INTEGRATE project	North America	Mixed methods	“To evaluate an intervention aimed at building capacity to deliver palliative care in primary care settings.”
Finucane, 2021	How many people will need palliative care in Scotland by 2040? A mixed-method study of projected palliative care need and recommendations for service delivery	Europe	Mixed methods	“The aim of this study was to estimate, and project future palliative care need and complexity of need in Scotland up to 2040.”
Gabbard, 2021	Effectiveness of a Nurse-led Multidisciplinary intervention vs usual care on advance care planning for Vulnerable older adults in an accountable care Organization	Europe	Quantitative	“To determine whether a nurse navigator–led ACP pathway combined with a health care professional–facing EHR interface improves the occurrence of ACP discussions and their documentation within the EHR”
Gómez-Batiste, 2014	Prevalence and characteristics of patients with advanced chronic conditions in need of palliative care in the general population: a cross-sectional study	Europe	Quantitative	“Determine, by direct measurement, the prevalence of people in need of palliative care among advanced chronically ill patients in a whole geographic population.”
González González, 2020	End-of-life care preferences of older patients with multimorbidity: Protocol of a mixed-methods systematic review	Asia, Europe, North America	Review - systematic	“we systematically reviewed EoL care preferences in older patients with multimorbidity.”
Hung, 2013	Potential benefits of palliative care for polysymptomatic patients with late-stage nonmalignant disease in Taiwan	Asia	Quantitative	“Our aim was to document the polysymptomatic presentation of illness in Taiwanese patients with late-stage nonmalignant disease and to evaluate the potential benefits of palliative care for these patients”
Izumi, 2018	Feasibility and acceptability of Nurse-led primary palliative care for older adults with chronic conditions: A Pilot study	North America	Quantitative	“To assess feasibility and acceptability of a nurse-led Transitional palliative care (TPC) program for older adults with serious illness
Kelley, 2014	Identifying the population with serious illness: The “denominator” challenge	North America	Case study	“...an acronym was developed to help nurses identify appropriate residents to refer for a palliative care consult. In this article, we will discuss the acronym and a case report of an elderly male with multiple chronic incurable conditions who did not have significant weight loss”
Kelley, 2018	Does this patient in long-term care (LTC) need a palliative care consult?	North America	Mixed methods	“To define and operationalize a description of serious illness for the purpose of identifying patients and caregivers who need primary or specialty palliative care services.”
Kinzbrunner, 1996	Hospice medicine. Debility, unspecified: a Terminal diagnosis	North America	Quantitative	“To determine whether the diagnosis “debility, unspecified” (ICD-9 code 799.3) is appropriate for use with terminally ill patients and to define the criteria for assigning the diagnosis.”
Lakin, 2020	Earlier identification of seriously ill patients: an implementation case series	North America, Europe	Quantitative	“we aim to explore how diverse systems apply patient selection in practice and present a narrative case series of patient selection strategies and experiences of health systems implementing the serious illness care Program (targeted palliative care intervention)”
Llop-Medina, 2022	Palliative care in older people with Multimorbidities: A scoping review on the palliative care needs of patients, carers, and health professionals	Africa, asia, australasia, Europe, North America	Review – scoping	“The aim of this scoping review was to identify the PC needs of patients with multimorbidities (excluding cancer), their family caregivers and the professionals that work with these patients to obtain a global vision of the actors involved in the provision of PC.”
Llop-Medina, 2022	The experiences and views on palliative care of older people with Multimorbidities, their family caregivers and professionals in a Spanish Hospital	Europe	Qualitative	“Sought to understand what constitutes successful specialist palliative care in the view of all stakeholders involved, older multimorbid patients with non-cancer diseases, their informal caregivers and the health professionals who carry out their work in the field of palliative care”
Mason, 2016	‘My body’s falling apart.’ understanding the experiences of patients with advanced multimorbidity to improve care: serial interviews with patients and carers	Europe	Qualitative	“We report the experiences and perceptions of people with advanced multimorbidity to inform improvements in palliative and end-of-life care”
Mason, 2018	Computer screening for palliative care needs in primary care: a mixed-methods study	Europe	Mixed methods	“To refine and evaluate the utility of a computer application (AnticiPal) to help primary care teams screen their registered patients for people who could benefit from palliative care.”
Mayr, 2021	Feasibility of a Home-Based palliative care intervention for elderly Multimorbid Survivors of critical illness	North America	Quantitative	“To evaluate the operational feasibility of a 90-day home-based palliative care intervention in multimorbid elderly Veteran survivors of critical illness.”
Murali, 2021	Latent Class analysis of symptom burden among seriously Ill adults at the end of life	Australasia, North America	Quantitative	“The objectives of this study were to (a) describe the demographic and baseline characteristics of seriously ill adults at the end of life in this palliative care cohort; (b) identify latent subgroups of seriously ill individuals based on severity of symptom burden; and (c) examine variables associated with latent subgroup membership, such as QOL, functional status, and the presence of multiple chronic conditions.”
Nicholson, 2018	What are the main palliative care symptoms and concerns of older people with multimorbidity?-a comparative cross-sectional study using routinely collected Phase of illness, Australia-modified Karnofsky Performance status and integrated palliative care outcome Scale data	Europe	Quantitative	“To describe the clinical characteristics, symptoms and other concerns of older people with multi-morbidity referred to a new community palliative care service; and to explore possible implications for service delivery by comparing this service population with people receiving standard community-based specialist palliative care.”
Nicholson, 2023	Addressing inequity in palliative care provision for older people living with multimorbidity. Perspectives of community-dwelling older people on their palliative care needs: A scoping review	Asia, australasia, Europe, North America, South America	Review - scoping	“To understand the palliative care needs of community-dwelling people aged ⩾60 living with multimorbidity in the last 2 years of life.”
Portz, 2017	High symptom burden and low functional status in the setting of multimorbidity	Australasia, North America	Quantitative	“This analysis investigated the relationship between multimorbidity, symptom burden, and functional status in individuals with life-limiting illness.”
Powell, 2021	Palliative care for older adults with multimorbidity in the time of COVID 19	North America	Editorial	“In this article, we consider how palliative care specialists can help support this population and review how palliative care can be accessed by outpatients and inpatients during this pandemic.”
Reinke, 2019	Symptom burden and palliative care needs among high-Risk Veterans with multimorbidity	North America	Quantitative	“We assessed symptom burden and quality of life among veterans with multimorbidity and sought to determine if their bothersome symptoms were addressed and treated in the primary care setting.”
Schonfeld, 2012	Assessing challenges in end-of-life conversations with elderly patients with multiple morbidities	North America	Qualitative	“we conducted focus group interviews with primary care physicians and house staff to ask them about their experiences with elderly patients who had multiple comorbidities (MCM)”
Stokes, 2017	Does the impact of case management vary in different subgroups of multimorbidity? Secondary analysis of a quasi-experiment	Europe	Quantitative	“To explore whether the effects of case management vary in patients with different types of multimorbidity, we extend an existing analysis using these different descriptions of multimorbidity to stratify patients within the sample.”
The University of Edinburgh, 2022	Supportive and palliative care indicators tool (SPICT™)	Europe	Guideline	“SPICT™ is used to help identify people with deteriorating health due to a new serious illness, one or multiple health conditions, or frailty in older age so they benefit from holistic assessment, future care planning (advance/anticipatory care planning) and a palliative approach to care.”
The Gold standards framework, 2022	The Gold standards framework proactive identification guidance	Europe	Guideline	“aims to enable the earlier identification of people who may need additional supportive care as they near the end of their life (see GMC and NICE description of end of life care), to include final year of life as well as final days. This includes people with any condition, in any setting, given by any care provider (not just those needing specialist palliative care), following any trajectory of decline for expected deaths”
Wijers, 2019	The disease burden Morbidity assessment in older adults and its association with mortality and other health outcomes	Europe	Quantitative	“To assess how disease burden caused by chronic conditions is related to mortality (predictive validity) and other health outcomes (convergent validity).”

Figure 1.

PRISMA flowchart for Scoping Reviews.

Study characteristics

Included articles were published between 1992 and 2023, with the majority (33/38) published after 2014. Eighteen studies were quantitative; five were reviews; four used mixed methods research; four were qualitative; three were editorials; and two were case studies. Additionally, two palliative care needs assessment tools were identified in the Grey Literature. No policy documents or guidelines with a description of Advanced Multimorbidity were identified.

Most studies which listed a country of recruitment of participants (or in the case of editorials, for authors) (n = 37) focussed on only one continent (n = 30) – 18 were in Europe, 11 North America and one Asia. Seven studies included multiple continents. Twenty-one studies included the age of participants with a mean age across these studies of 78.5 years. Only four studies reported patient and/or public involvement in their research.^7,27,31,32

Descriptions of advanced multimorbidity

There was substantial variation in the number and types of conditions included in descriptions of Advanced Multimorbidity, with 44 different descriptions identified across 38 included publications (Table 3). Only two of the descriptions were used in multiple studies.

Table 3.

Descriptions of advanced multimorbidity.

Author & year	Definition of multimorbidityNumber of conditions	Definition of advanced	Content analysis
Author & year	Types of conditions	Definition of advanced	Content analysis
Amblas-Novellas, 2021	≥2	Advanced frailty, recent admission, increased care needs at home, the surprise question, patient/caregiver requesting palliative/comfort treatments only, healthcare practitioner considers patient needs palliative care, albumin <2.5g/dl, >10% weight loss, nutritional decline, functional dependence measured or perceived by healthcare practitioners, loss of 2 or more activities of daily living, persistent pressure ulcers, recurrent infections, delirium, persistent dysphagia, falls, emotional distress, 2 or more unplanned hospitalisations, needing intense continuing care at home	Healthcare, functional, nutritional, self-identified, symptoms, syndromes (falls, pressure ulcers, delirium, infections), practitioner-identified
Amblas-Novellas, 2021	Unspecified
Bekker, 2022	≥2	Retrospective identification of those ≥65 years from death records	Age
Bekker, 2022	Not cancer or organ-failure		Age
Bernabeu-Wittel, 2023	≥2	Refractory symptoms, severe dependence and those who died	Symptoms, functional
Bernabeu-Wittel, 2023	Unspecified	Refractory symptoms, severe dependence and those who died	Symptoms, functional
Bone, 2016	“Conditions”	Frail and ≥75 years	Age, functional
Bone, 2016	Non-malignant	Frail and ≥75 years	Age, functional
Calam, 2011	“Multimorbidity”	Advanced long-term condition and/or life-limiting condition, the surprise question, poor performance status, >10% weight loss, 2 or more unplanned hospitalisations, in a care home or needing more care at home	Practitioner-identified, functional, nutritional, healthcare
Calam, 2011	Unspecified
Clarke, 2012	≥3	Older adults who spontaneously brought up death and dying	Age, self-identified
Clarke, 2012	Most prevalent in population	Older adults who spontaneously brought up death and dying	Age, self-identified
Cohn, 2018	“Several”	Declining appetite and weight loss, declining functional status, unplanned emergency department attendance and hospitalisations, declining effectiveness of medications	Functional, nutritional, healthcare, treatment response
Cohn, 2018	Unspecified		Functional, nutritional, healthcare, treatment response
Dahlqvist, 2019	≥3	75 years or older and hospitalised at least 3 times over 12 months	Age, healthcare
Dahlqvist, 2019	Unspecified		Age, healthcare
de Decker, 2014	“Multimorbidity”	80 years or older	Age
de Decker, 2014	Unspecified	80 years or older	Age
Etkind, 2022 (1)	≥2	Presence of life-limiting conditions	Nature of conditions
Etkind, 2022 (1)	Life-limiting conditions	Presence of life-limiting conditions	Nature of conditions
Etkind 2022 (2)	≥2	Life-limiting condition and functional impairment	Nature of conditions, functional
Etkind 2022 (2)	One must be a life-limiting conditions	Life-limiting condition and functional impairment	Nature of conditions, functional
Etkind 2022 (3)	≥2	Life-limiting condition and high healthcare use	Nature of conditions, healthcare
Etkind 2022 (3)	One must be a life-limiting conditions	Life-limiting condition and high healthcare use	Nature of conditions, healthcare
Etkind 2022 (4)	≥2	Functional impairment and high healthcare use	Healthcare, functional
Etkind 2022 (4)	Unspecified	Functional impairment and high healthcare use	Healthcare, functional
Etkind 2022 (5)	≥2	Identified as approaching end of life through the surprise question or Gold standards framework criteria	Practitioner-identified
Etkind 2022 (5)	Unspecified		Practitioner-identified
Evans C, 2021	“Conditions”	≥75 years, frail and have >2 of unresolved symptoms, increased caregiver suffering and rising healthcare use	Age, functional, symptoms, caregiver burden, healthcare
Evans C, 2021	Non-malignant		Age, functional, symptoms, caregiver burden, healthcare
Evans J, 2021	“Multiple”	>75 years and the surprise question	Age, practitioner-identified
Evans J, 2021	Unspecified	>75 years and the surprise question	Age, practitioner-identified
Finucane, 2021	≥2	Chronic diseases associated with palliative care need	Nature of conditions
Finucane, 2021	Conditions with palliative care need	Chronic diseases associated with palliative care need	Nature of conditions
Gabbard, 2021	Charlson ≥3	65 years or older and indication of cognitive or physical impairment and/or frailty	Age, functional
Gabbard, 2021	Charlson conditions		Age, functional
Gómez-Batiste, 2014	≥2	Healthcare practitioners identified advanced chronically ill patients	Practitioner-identified
Gómez-Batiste, 2014	Most prevalent in population		Practitioner-identified
González González, 2020	≥2	≥60 years	Age
González González, 2020	Unspecified	≥60 years	Age
Hung, 2013	≥2	Particular conditions, hospital admission due to exacerbation of chronic illness, infection, gastrointestinal bleeding or shock and physicians identified a “do not resuscitate” form	Nature of conditions, practitioner-identified, healthcare, syndromes (infection, gastrointestinal bleeding or shock)
Hung, 2013	Five different non-malignant conditions
Izumi, 2018	≥2	≥55 and hospital admission	Age, healthcare
Izumi, 2018	Prespecified (not justified)	≥55 and hospital admission	Age, healthcare
Kelley, 2014	“Multiple”	Non-healing wounds, recurrent infections, progressive functional decline, >10% weight loss, frequent use of emergency department or hospitalisations or unrelieved symptoms	Syndrome (wounds, infections), functional, nutritional, healthcare, symptoms
Kelley, 2014	Unspecified
Kelley, 2018	≥3	Dartmouth atlas list conditions, healthcare utilisation, functional dependence, nutritional decline, cognitive impairment, symptoms and caregiver strain	Nature of conditions, healthcare, functional, nutritional, symptoms, caregiver strain
Kelley, 2018	Dartmouth atlas list
Kinzbrunner, 1996^a	Decline not due to “one specific disease”	Terminal prognosis cannot be attributed to one specified disease	Nature of conditions
Kinzbrunner, 1996^a	Unspecified		Nature of conditions
Lakin, 2020	“Multiple”	Multiple hospitalisations, particular insurance types and the surprise question	Healthcare, practitioner-identified, benefit eligibility
Lakin, 2020	Unspecified		Healthcare, practitioner-identified, benefit eligibility
Llop-Medina, 2022	≥2	≥60 years	Age
Llop-Medina, 2022	Unspecified	≥60 years	Age
Llop-Medina, 2022	“Multimorbid”	≥65 years	Age
Llop-Medina, 2022	Unspecified	≥65 years	Age
Mason, 2016 (1)	“Multiple”	The surprise question, life-limiting conditions	Practitioner-identified, nature of conditions
Mason, 2016 (1)	Life-limiting conditions	The surprise question, life-limiting conditions	Practitioner-identified, nature of conditions
Mason, 2016 (2)	“Several”	The surprise question	Practitioner-identified
Mason, 2016 (2)	Unspecified	The surprise question	Practitioner-identified
Mason, 2018 (1)	“Multiple”	“Multiple organ failure” code	Nature of conditions
Mason, 2018 (1)	Palliative care need	“Multiple organ failure” code	Nature of conditions
Mason, 2018 (2)	“Multimorbidity”	Housebound	Functional
Mason, 2018 (2)	Unspecified	Housebound	Functional
Mason, 2018 (3)	3	Heart failure, chronic kidney disease and chronic obstructive pulmonary disease	Nature of conditions
Mason, 2018 (3)	Palliative care need		Nature of conditions
Mason, 2018 (4)	2	Peripheral vascular disease and chronic kidney disease	Nature of conditions
Mason, 2018 (4)	Palliative care need	Peripheral vascular disease and chronic kidney disease	Nature of conditions
Mayr, 2021	“Multimorbid”	Elderly intensive care unit survivors	Age, syndrome (ICU discharge)
Mayr, 2021	Unspecified	Elderly intensive care unit survivors	Age, syndrome (ICU discharge)
Murali, 2021^b	≥2	Physician identified as having life-limiting illness and declining functional state	Practitioner-identified, functional
Murali, 2021^b	Charlson conditions		Practitioner-identified, functional
Nicholson, 2018	≥2	Healthcare professional thinks patient to be in last year of life, frailty, multiple hospital admissions, increasing uncertainty, deterioration, precarious social support, would benefit from future care planning, requires care coordination, particular conditions	Nature of conditions, healthcare, functional, caregiver burden + practitioner-identified
Nicholson, 2018	Prespecified (not justified)
Nicholson, 2023	≥2	Aged 60 years or older, practitioner deems them to be in last 1-2 years of life or living with advanced disease or frail	Age + practitioner identified
Nicholson, 2023	Unspecified		Age + practitioner identified
Portz, 2017^b	≥2	The surprise question, physician thinks life expectancy <1 month and declining functional status	Practitioner-identified, functional
Portz, 2017^b	Charlson conditions		Practitioner-identified, functional
Powell, 2021	“Multimorbidity”	Older patients, require assistance with activities of daily living	Age, functional
Powell, 2021	Unspecified		Age, functional
Reinke, 2019	“Diagnoses”	Prognostic model – Care assessment needs score	Tool-identified
Reinke, 2019	Elixhauser conditions	Prognostic model – Care assessment needs score	Tool-identified
Schonfeld, 2012^a	“Not a single terminal diagnosis”	Patient could have term “debility, unspecified” applied	Nature of conditions
Schonfeld, 2012^a	Unspecified	Patient could have term “debility, unspecified” applied	Nature of conditions
Stokes, 2017	Charlson >5	Charlson >5	Tool-identified
Stokes, 2017	Charlson conditions	Charlson >5	Tool-identified
The University of Edinburgh, 2022	“Multiple”	Unplanned hospitalisations, poor or deteriorating performance status, dependent on others for care, progressive weight loss, persistent symptoms, the person or family asks for palliative care, best available treatment has poor outcome	Healthcare, functional, caregiver burden, nutritional, symptoms, self-identified
The University of Edinburgh, 2022	Unspecified
The Gold standards framework, 2022	≥2	The surprise question, general physical decline, increasing dependence, repeated unplanned hospitalisations, unstable/deteriorating symptoms, decreased activity, decreasing treatment effectiveness, patient choses to focus on quality of life, >10% weight loss, serious/frequent falls, carer distress, transfer to nursing home, albumin <25g/l, eligible for DS1500 payment, frailty, using multiple services	Practitioner-identified, healthcare, functional, treatment response, nutritional, symptoms, caregiver burden, benefit eligibility, self-identified
The Gold standards framework, 2022	Unspecified
Wijers, 2019	≥2	Disease burden Morbidity assessment	Tool-identified
Wijers, 2019	21 chronic conditions from other multimorbidity indexes	Disease burden Morbidity assessment	Tool-identified

^aSame description.

^bSame description.

The International Classification of Diseases (ICD)-9 code “Debility, unspecified”, was used in two different studies.^33,34 Two studies performed secondary analysis of the same dataset using the same description – serious illness diagnosis with limited life expectancy (1 year or less as per physician assessment), functional impairment at baseline (Australian Karnofksy Performance Status <80%) and multimorbidity (Charlson Comorbidity Index ≥2 conditions)).^35,36 Of note, this latter description was also used in two further studies.^37,38 However as this was the same study team and same dataset as another included study³⁵ the decision was made to exclude these.

Whilst most studies only used one description, three studies used multiple descriptions (ranging from two to five descriptions) of Advanced Multimorbidity.^27,39,40

Types of conditions included in descriptions of advanced multimorbidity

Eighteen of the 44 descriptions used specific conditions in their description of Advanced Multimorbidity. Seven of these restricted their descriptions to only include conditions that were deemed to be ‘life-limiting’ or known to be associated with ‘palliative care need’.^7,17,27,39 Five of these descriptions used multimorbidity indices – Charlson Comorbidity Index in three,^35,36,41,42 Elixhauser Comorbidity Index in one⁴³ and one description amalgamated a number of indices.⁴⁴ Three descriptions specified that conditions must be non-malignant^31,32,45 whilst another description specified that participants did not have cancer or end-stage organ failure as any of their conditions.¹⁴ One description used conditions from the Dartmouth Atlas of Health Care report on Variation of End-of-Life Care.⁴⁶ The final two specified certain conditions, with no explicit justification for how these had been selected.^47,48

Four descriptions part-specified conditions, e.g. at least one of the conditions had to be of a particular type – two of these, from the same study,²⁷ specified that one condition must be life-limiting and two^49,50 specified participants must have at least one of the most prevalent chronic illnesses in the respective settings.

Additionally, four of the descriptions stipulated that there was no predominant condition which was driving a terminal decline prior to a diagnosis of Advanced Multimorbidity being made.^{14,33,34,51,52}

The remaining 22 descriptions did not specify the type of conditions to be included within their description of Advanced Multimorbidity.

Definitions of multimorbidity by type of conditions
Specific conditions named (n=18/44 papers) Must include ‘life limiting’ or ‘palliative care need’ condition (n=7/44 papers) Includes multimorbidity indices (n=5/44 papers) Specified as non-malignant conditions (n=3/44 papers) Specified as non-malignant and not end-stage organ failure (n=1/44 papers) Dartmouth atlas (n=1/44 papers) Conditions specified but no justification given (n=2/44 papers) Conditions were part specified (n=4/44 papers) Specified there is no predominant condition (n=4/44 papers) No restriction to specific conditions (n=22/44 papers)

Definitions of multimorbidity by type of conditions

Specific conditions named (n=18/44 papers)
Must include ‘life limiting’ or ‘palliative care need’ condition (n=7/44 papers)
Includes multimorbidity indices (n=5/44 papers)
Specified as non-malignant conditions (n=3/44 papers)
Specified as non-malignant and not end-stage organ failure (n=1/44 papers)
Dartmouth atlas (n=1/44 papers)
Conditions specified but no justification given (n=2/44 papers)
Conditions were part specified (n=4/44 papers)
Specified there is no predominant condition (n=4/44 papers)
No restriction to specific conditions (n=22/44 papers)

Number of conditions required within descriptions of advanced multimorbidity

Twenty of the total 44 descriptions defined multimorbidity as the presence of two or more conditions.^{7,14,27,35,36,39,44,45,47–49,51,53–56} Four descriptions specified that participants should have three or more conditions.^39,46,50,57 Two of the studies employed the Charlson index, with one requiring numbers of conditions to be ≥3⁴¹ and the other requiring >5.⁴² Fifteen descriptions used plural terms, such as ‘multiple’ or ‘several’ conditions, with no associated numerical indicator.^{17,31–34,39,43,58–62} The final three descriptions simply described multimorbidity as ‘multimorbidity’.^58,63,64

Definitions of multimorbidity by number of conditions
2 or more conditions (n=20/44 papers) 3 or more conditions (n=4/44 papers) Charlson index + ≥3 conditions (n=1/44 papers) Charlson index + ≥5 conditions (n=1/44 papers) Plural terms used but no specified numerical value (n=15/44 papers) No definition other than ‘multimorbidity’ (n=3/44 papers)

Approaches to the identification of advanced multimorbidity

Twenty-six descriptions took a multidimensional approach; incorporating a range of different indicators to identify and characterise Advanced Multimorbidity. These comprised between two and nine indicators per description. Palliative care needs assessment tools typically incorporated a greater number of indicators than research studies, with the Supportive and Palliative Care Indicators Tool (SPICT)⁶² using six indicators, NECesidades PALiativas (NECPAL)^49,51 using seven indicators and the Gold Standards Framework Proactive Identification Guidance⁵⁶ using nine indicators. There were 18 descriptions which used only one indicator to identify Advanced Multimorbidity.

Content analysis of advanced multimorbidity descriptions

Eleven discrete categories of indicators were identified within the 44 included descriptions of Advanced Multimorbidity:

• Global assessments were in 17/44 descriptions, which encompassed holistic assessments of the patient’s health overall

○ 12/17 used practitioner assessment

■ These included the surprise question (“Would you be surprised if this patient were to die in the next 12 months?”)^{17,27,35,36,51,52,56,59,61}; subjective assessments of patients^45,49,51,55; decisions to undertake future care planning^45,48 and use of national identification tools²⁷

○ 4/17 used self-identification

■ These involved patients choosing not to pursue curative treatments^51,56,62 or expressing that death and dying were of an important consideration to them⁵⁰

○ 3/17 used assessment tools

■ These included the Charlson Comorbidity Index,⁴² Disease Burden Morbidity Assessment⁴⁴ and the Care Assessment Needs tool⁴³

• Functional assessments were in 16/44

■ These included identifying participants as frail^{27,31,32,34,36,39,41,46,48,51,52,56,58,60,62,65} or measurement overall functional status^39,58

• Age was in 15/44

■ These included studies measuring age alone,^{14,33,53,54,60,63,64} age alongside other indicators^{31,32,41,47,48,50,57,59,66–68} and restricting the study to particular age cut-offs^27,44,51,52

• Pattern of healthcare utilisation was in 15/44

■ These included unscheduled care attendance,^{51,56,58,60,62} hospitalisations^47,51,52,57 and increased care needs in the community^{27,46,51,52,56}

• Type of conditions was in 12/44

■ These definitions specified particular conditions which had to be included^{7,17,27,33,34,39,45,46,48}

• Nutritional status was in 7/44

■ These included measuring weight loss^{51,52,56,60,62} and albumin levels^51,56

• Symptom burden was in 7/44

■ These definitions incorporated symptom assessments^{32,46,51,56,60,62,65}

• Caregiver strain was in 5/44

■ These definitions measured caregiver strain^48,62

• Clinical syndromes were in 3/44

■ These focussed on particular presentations including pressure ulcers, infections, delirium, dysphagia, falls^51,60 and acute clinical presentations⁴⁵

• Benefit eligibility was in 2/44

■ These focussed on health and welfare benefit eligibility^56,61

• Responsiveness to treatments was in 2/44

■ These incorporated reduced treatment efficacy^56,58

Figure 2 summarises the interaction between the various indicators in the descriptions of Advanced Multimorbidity. As this figure shows, the most prevalent use of indicators overall within descriptions was using a single indicator approach of only condition type (n = 6), global assessment (n = 6) and age (n = 6). The most prevalent multidimensional descriptions all featured age plus either functional assessment (n = 3), holistic assessment (n = 3) or pattern of healthcare utilisation (n = 2). The remaining definitions each used different indicators either on their own or in combination.

Figure 2.

This figure details the various indicators included in the descriptions, with the number of definitions which involved each indicator and the frequency of particular combinations of indicators within the definitions.

Supplemental File 2 describes in more detail how each of these indicators were used in the various descriptions of Advanced Multimorbidity.

Stakeholder consultation

Six public members and thirty-three clinicians and academics participated in stakeholder consultations. Most clinicians and academics felt that there was a role in defining Advanced Multimorbidity – 26 voted ‘yes’, three voted ‘maybe’, and six did not answer. Public advisors all agreed that a description could be useful, but expressed that one description may not suit everyone and were concerned a single description may be too restrictive and may exclude some individuals. Stakeholders felt that a description could be beneficial to a wide range of groups, citing patients, families, bereaved caregivers, healthcare professionals, researchers, healthcare systems and policymakers. Clinicians and academics felt an optimal description should be concise, uncomplicated, contain measurable indicators and ensure some focus on quality of life. Whilst public advisors felt that clinicians should be the ones to drive decisions around identifying Advanced Multimorbidity, they felt it was important that such descriptions were “user-friendly” and accessible and acceptable to patients and those close to them.

Discussion

The term “Advanced Multimorbidity” was chosen as the basis of this scoping review, recognising that it mirrors widely accepted clinical language used in other end-stage conditions such as advanced cancer⁶⁹ and advanced organ failure^70,71 and reflects the chronic, incurable nature of such conditions. It has also already been used in previous research.^17,27 Advances in treatments for both malignant and non-malignant conditions mean that many people are living longer with their incurable conditions,^71,72 including multimorbidity. Whilst longer lives are often desirable, living with Advanced Multimorbidity is known to carry burdens for patients and their unpaid caregivers.¹⁷ A palliative care approach has been shown to offer a range of meaningful benefits for people with advanced illness, but the challenge stands about how and when people with multimorbidity, whose burdens may be particularly high, and/or who may be nearing the end of life, can be reliably identified. A palliative care approach is known to benefit many individuals, not only those who are close to the end of their lives – with improvements in quality of life, healthcare utilisation and associated financial burden.^15,73 However, much of the evidence base for the design and benefits of such palliative care approaches is limited to patients with single or discrete conditions, particularly cancer.^73,74 The evidence base for the benefits of palliative care approaches in non-malignant and/or multiple conditions is more mixed, with less evident impacts on quality of life.⁷⁵ However, this difference may be more reflective of an underdevelopment of palliative care interventions for people with non-malignant disease and resultant less available evidence for symptom management in such groups, compared to e.g. pain management in cancer.⁷⁶ There remains a further paucity of evidence for implementing palliative care approaches for people with multimorbidity – despite evidence that this group has palliative care needs.⁵⁴ However, prior to developing palliative care interventions that could benefit those with Advanced Multimorbidity, we need to first establish how best to identify individuals who could benefit from such an approach. Understanding current definitions is foundational to this aspiration.

Terminology around multimorbidity is evolving at pace and can be confusing. There is undoubtedly some overlap, in practice, in what is understood to be ‘Advanced Multimorbidity’ and ‘complex multimorbidity’ – with this latter term associated with various working descriptions and ultimately describing when multiple long-term health conditions severely impact health.⁷⁷ It is said that complex multimorbidity can apply at any point in the life course, and indeed it has been used to encompass a wide range of outcomes from work productivity, disability and quality of life. Whilst it is not a term that is used in any consistent way clinically, it has been proposed as a means to identify those who would benefit from multimorbidity-focussed care.⁷⁷ Advanced Multimorbidity, as conceptualised in this review, differs in that it relates to individuals and populations who, by nature of their illness burden and/or proximity to death, may benefit from a palliative care approach.

The publications included in this scoping review were all relatively recent, reflecting both a surge in multimorbidity research and increased awareness of the relevance of palliative care beyond single illnesses such as cancer.^78,79 There were no end-of-life care guidelines which specifically mentioned how to identify or treat people with multiple long-term conditions, although two palliative care needs assessment tools were identified that specified multimorbidity^56,62 and one further tool was applied to a population with multimorbidity.⁵¹ There were few studies which integrated patient and public involvement in their research. This was surprising given the increasing calls from the public, researchers and funding bodies alike to support such activities in recent years, driven by an understanding that collaborative approaches strengthen research relevance, quality and impact.⁸⁰

Age is heavily featured in many of the descriptions of Advanced Multimorbidity in the included studies, perhaps understandably, given that people typically accumulate conditions with advancing age. However, any reliance on age within a working definition could unhelpfully exclude individuals living with Advanced Multimorbidity at a younger age; a phenomenon associated with socioeconomically deprivation, with more deprived individuals shown to both develop multiple long-term conditions earlier^81,82 and to have poorer health trajectories with earlier onset and more rapid progression of multimorbidity.⁸³

There were also descriptions which focussed on particular condition types to describe Advanced Multimorbidity, mainly encompassing conditions typically recognised as associated with palliative care needs, such as cancer and organ failure.⁸⁴ Whilst this disease-focused epidemiological approach has often been adopted in palliative care research, particularly around population estimates,⁸⁴ the feasibility and validity of its prospective application to individuals is unknown. Such a disease-specific approach risks excluding those without ‘typical’ palliative conditions yet with a cumulative disease burden, which means they could benefit from a palliative care approach.

Many of the descriptions included took a multidimensional approach, encompassing a broader, more holistic assessment of patients. The identified palliative care tools (NECPAL,⁵¹ SPICT⁶² and the Gold Standards Framework⁵⁶) used the highest number of indicators in their descriptions – perhaps reflective of these being utilised in clinical practice rather than in epidemiological research. Many of the commonly used indicators, such as functional assessment, healthcare use and type of condition, can typically be obtained from routinely collated healthcare data, which may have influenced the researchers’ choice in selecting them. There was little emphasis on utilising patient-reported outcomes, such as patient self-identification of advanced illness, symptom assessments and measures of caregiver strain, as a marker of Advanced Multimorbidity. Such assessments have become standard in clinical practice, yet are not routinely utilised for research purposes. In certain fields, such as Oncology, it has been shown that patient-reported outcome measures can be used to identify those who have specialist palliative care needs.⁸⁵ However, proactive use of measures of patient need requires identification that a person may benefit from such an assessment, knowledge of the assessment itself and time and resources to complete the assessment effectively. Nonetheless, our public and clinical stakeholders recommended that future measures of Advanced Multimorbidity should encompass patient and/or caregiver measures relating to quality of life.

The heterogeneity of descriptions described in this review echoes the lack of consistency in how people with multimorbidity are identified in clinical practice.⁸⁶ Greater consensus and standardisation of descriptions of Advanced Multimorbidity would allow for several potential benefits including:

• Identification of people who may benefit from symptom assessments, consideration of their psychological and social needs and future care planning discussions

• Shared decision-making opportunities supporting rationalisation and optimisation of current treatments with resultant reduction in medicalisation (a so-called Realistic Medicine’ approach⁸⁷) for many

Furthermore, this could in turn improve system capacity to deliver preventative and potentially curative treatments for those who would benefit. Such a standardised approach to defining and identifying people with Advanced Multimorbidity would be relevant across a vast range of clinical specialities and teams, including, but not limited to, primary care, specialist palliative care and geriatric medicine, to align their practices in a way that is not currently the case. Future research, including prospective clinical studies and retrospective, epidemiological studies would also benefit from consistency of definition.

Strengths and limitations

This review was conducted in accordance with scoping review guidance and a pre-published protocol, ensuring it was both comprehensive and robust.²² The only deviance from the protocol was in refining the research question to reflect the heterogeneity of studies included and to move away from describing definitions from research, policy and practice, as it was recognised no articles were identifiable from the latter two sources. It captured a wide variety of evidence sources, including Grey Literature. Despite this, no guidelines were identified which focussed specifically on care for people with Advanced Multimorbidity. This may have been due to the study eligibility criteria excluding more general end-of-life care guidelines, as these lacked a specific mention of multimorbidity. Such guidelines may indeed be applicable to those with Advanced Multimorbidity, but were out-with the scope of this review. Furthermore, studies examining multimorbidity (or comorbidity) in specific disease groups were excluded to maximise the generalizability of the findings to those with Advanced Multimorbidity. There may be further lessons to learn about how multimorbidity affects the end-of-life period in people with specific index conditions, such as dementia, cancer or organ failure. Attempts were made to synthesise the findings to provide a usable descriptor for Advanced Multimorbidity. However, the lack of consistency across the included studies was prohibitive. Therefore, this review has focussed on detailing and categorising the various descriptors instead. A further strength of this review is in the incorporation of stakeholder consultations and involvement of our Public Advisory Group from conceptualisation through to output to ensure this work is meaningful and relevant to patients and caregivers.

Conclusion

This review has highlighted a lack of consistency around how people with Advanced Multimorbidity are defined, described, and thus understood, both in clinical practice and research. Such heterogeneity of approach risks the under-identification of people who may benefit from discussions around future care planning and the consideration of a palliative care approach. In turn, this risks variation in care including poor care experiences and outcomes for many.

The reported definitions which were multidimensional in approach, combining multiple concurrent measures, offer considerable appeal and may be more likely to lead to a greater number of people being identified, whilst also supporting a more holistic assessment of individuals’ needs.

Further research in this important area is a necessity if we are to ensure that people living with Advanced Multimorbidity are to access the palliative care they need. Such research must include input from a variety of stakeholders, including people with lived experience, clinicians, researchers and policymakers. Future work could look to evaluate the predictive value of existing descriptions and develop novel multidimensional descriptors with person-centred, measurable variables included, building on the evidence gathered by this review. This could be aided further by consideration of multimorbidity as a broad concept, instead of distilling this down to discrete conditions co-existing. Furthermore, validation of future ways to identify those with Advanced Multimorbidity should be undertaken in diverse populations. Once robust methods of identifying Advanced Multimorbidity are established, the challenge for researchers, policymakers and clinicians lies in developing robust palliative care interventions fit to meet the needs of this diverse group. Ultimately, future work needs to be focused on delivering improvements in care as, in the words of a member of the studies’ Public Advisory Group: “it’s not just about defining something, it’s about improving the end of life for people”.

Supplemental Material

Supplemental Material - Descriptions of advanced multimorbidity: A scoping review with content analysis

Supplemental Material for Descriptions of advanced multimorbidity: A scoping review with content analysis by Sarah P Bowers, Polly Black, Lewis McCheyne, Darcy Wilson, Rose S Penfold, Liam Stapleton, Pam Channer, Sarah E E Mills, Linda Williams, Frances Quirk, and Jo Bowden in Journal of Multimorbidity and Comorbidity

Footnotes

Acknowledgements

Author PC is a representative of our Public Advisory Group and part of the Fife Community Advisory Council within the University of St Andrews – we are immensely grateful for their ongoing commitment and guidance to this work. We are extremely grateful to Vicki Cormie, Senior Librarian at University of St Andrews, for her support and guidance in the development of the search strategy and to our public advisory team who have provided their expert lived opinion to the development of this scoping review. Particular thanks also to Rosie Dunn for her guidance on using content analysis within scoping reviews.

Declaration of conflicting interests

The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: SPB is a current Editorial Fellow with the Journal of Multimorbidity & Comorbidity. SPB, PB and RSP are all fellows on the Multimorbidity Doctoral Training Programme for Health Professionals, which is supported by the Wellcome Trust (223499/Z/21/Z).

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: SPB, PB and RSP are all fellows on the Multimorbidity Doctoral Training Programme for Health Professionals, which is supported by the Wellcome Trust (223499/Z/21/Z). In order to meet institutional and research funder open access requirements, any accepted manuscript arising shall be open access under a Creative Commons Attribution (CC BY) reuse licence with zero embargo.

ORCID iD

Sarah P Bowers

Supplemental Material

Supplemental material for this article is available online.

References

The PLoS Medicine Editors . Multimorbidity: Addressing the next global pandemic. PLoS Med 2023; 20(4): e1004229. DOI: 10.1371/journal.pmed.1004229.

Cassell

Edwards

Harshfield

, et al. The epidemiology of multimorbidity in primary care: a retrospective cohort study. Br J Gen Pract 2018; 68(669): e245–e251. DOI: 10.3399/bjgp18X695465.

Johnston

Black

Mercer

, et al. Prevalence of secondary care multimorbidity in mid-life and its association with premature mortality in a large longitudinal cohort study. BMJ Open 2020; 10(5): e033622. DOI: 10.1136/bmjopen-2019-033622.

Hanlon

Jani

Nicholl

, et al. Associations between multimorbidity and adverse health outcomes in UK Biobank and the SAIL Databank: A comparison of longitudinal cohort studies. PLoS Med 2022; 19(3): e1003931. DOI: 10.1371/journal.pmed.1003931.

Fortin

Lapointe

Hudon

, et al. Multimorbidity and quality of life in primary care: a systematic review. Health Qual Life Outcomes 2004; 2: 51. DOI: 10.1186/1477-7525-2-51.

Soley-Bori

Ashworth

Bisquera

, et al. Impact of multimorbidity on healthcare costs and utilisation: a systematic review of the UK literature. Br J Gen Pract 2021; 71(702): e39–e46. DOI: 10.3399/bjgp20X713897.

Finucane

Bone

Etkind

, et al. How many people will need palliative care in Scotland by 2040? A mixed-method study of projected palliative care need and recommendations for service delivery. BMJ Open 2021; 11(2): e041317. DOI: 10.1136/bmjopen-2020-041317.

Eckerblad

Theander

Ekdahl

, et al. Symptom trajectory and symptom burden in older people with multimorbidity, secondary outcome from the RCT AGe-FIT study. Journal of Advanced Nursing 2016; 72(11): 2773–2783. DOI: 10.1111/jan.13032.

Brijoux

Woopen

Zank

. Multimorbidity in old age and its impact on life results. Zeitschrift fur Gerontologie und Geriatrie 2021; 54(Suppl 2): 108–113. DOI: 10.1007/s00391-021-01920-9.

10.

Bone

Evans

Henson

, et al. Influences on emergency department attendance among frail older people with deteriorating health: a multicentre prospective cohort study. Public Health 2021; 194: 4–10. DOI: 10.1016/j.puhe.2021.02.031.

11.

de Souto Barreto

Lapeyre-Mestre

Vellas

, et al. Multimorbidity type, hospitalizations and emergency department visits among nursing home residents: a preliminary study. Journal of Nutrition, Health & Aging 2014; 18(7): 705–709. DOI: 10.1007/s12603-014-0030-6.

12.

Wagner

Patrick

Khandelwal

, et al. The Influence of Multimorbidity on Health Care Utilization at the End of Life for Patients with Chronic Conditions. Journal of Palliative Medicine 2019; 22(10): 1260–1265. DOI: 10.1089/jpm.2018.0349.

13.

Paladino

Brannen

Benotti

, et al. Implementing Serious Illness Communication Processes in Primary Care: A Qualitative Study. Am J Hosp Palliat Care 2021; 38(5): 459–466. DOI: 10.1177/1049909120951095.

14.

Bekker

YAC

Suntjens

Engels

, et al. Advance care planning in primary care: a retrospective medical record study among patients with different illness trajectories. BMC Palliative Care 2022; 21(1): 21. DOI: 10.1186/s12904-022-00907-6.

15.

Murray

Kendall

Mitchell

, et al. Palliative care from diagnosis to death. Bmj 2017; 356: j878. DOI: 10.1136/bmj.j878.

16.

The Royal Australian College of General Practitioners . RACGP aged care clinical guide (Silver Book). East Melbourne, VIC: RACGP, 2019.

17.

Mason

Nanton

Epiphaniou

, et al. My body's falling apart.' Understanding the experiences of patients with advanced multimorbidity to improve care: serial interviews with patients and carers. BMJ supportive & palliative care 2016; 6(1): 60–65. DOI: 10.1136/bmjspcare-2013-000639.

18.

Arksey

O'Malley

. Scoping studies: towards a methodological framework. International Journal of Social Research Methodology 2005; 8(1): 19–32. DOI: 10.1080/1364557032000119616.

19.

Levac

Colquhoun

O'Brien

. Scoping studies: advancing the methodology. Implement Sci 2010; 5: 69. DOI: 10.1186/1748-5908-5-69.

20.

Peters

Godfrey

Khalil

, et al. Guidance for conducting systematic scoping reviews. Int J Evid Based Healthc 2015; 13(3): 141–146. DOI: 10.1097/xeb.0000000000000050.

21.

Tricco

Lillie

Zarin

, et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation. Ann Intern Med 2018; 169(7): 467–473. DOI: 10.7326/m18-0850.

22.

Bowers

Black

McCheyne

, et al. Current definitions of advanced multimorbidity: a protocol for a scoping review. BMJ Open 2023; 13(11): e076903. DOI: 10.1136/bmjopen-2023-076903.

23.

Anderson

Allen

Peckham

, et al. Asking the right questions: scoping studies in the commissioning of research on the organisation and delivery of health services. Health Res Policy Syst 2008; 6: 7. DOI: 10.1186/1478-4505-6-7.

24.

Hudson

Lindberg

. Advanced Illness Care: Issues and Options. Public Policy & Aging Report 2014; 24(3): 79–80. DOI: 10.1093/ppar/pru034.

25.

Bruera

Yennurajalingam

. Palliative care in advanced cancer patients: how and when? Oncologist 2012; 17(2): 267–273. DOI: 10.1634/theoncologist.2011-0219.

26.

Traue

Ross

. Palliative care in non-malignant diseases. J R Soc Med 2005; 98(11): 503–506. DOI: 10.1177/014107680509801111.

27.

Etkind

Louca

, et al. Total uncertainty: a systematic review and thematic synthesis of experiences of uncertainty in older people with advanced multimorbidity, their informal carers and health professionals. Age & Ageing 2022; 51(8): 02. DOI: 10.1093/ageing/afac188.

28.

Harrison

Fortin

van den Akker

, et al. Comorbidity versus multimorbidity: Why it matters. J Multimorb Comorb 2021; 11: 2633556521993993. DOI: 10.1177/2633556521993993.

29.

Dunn

Clayton

Wolverson

, et al. Conceptualising comorbidity and multimorbidity in dementia: A scoping review and syndemic framework. J Multimorb Comorb 2022; 12: 26335565221128432. DOI: 10.1177/26335565221128432.

30.

Elo

Kyngäs

. The qualitative content analysis process. J Adv Nurs 2008; 62(1): 107–115. DOI: 10.1111/j.1365-2648.2007.04569.x.

31.

Bone

Morgan

Maddocks

, et al. Developing a model of short-term integrated palliative and supportive care for frail older people in community settings: perspectives of older people, carers and other key stakeholders. Age Ageing 2016; 45(6): 863–873. DOI: 10.1093/ageing/afw124.

32.

Evans

Bone

, et al. Community-based short-term integrated palliative and supportive care reduces symptom distress for older people with chronic noncancer conditions compared with usual care: A randomised controlled single-blind mixed method trial. International Journal of Nursing Studies 2021; 120: 103978. DOI: 10.1016/j.ijnurstu.2021.103978.

33.

Kinzbrunner

Weinreb

Merriman

. Debility, unspecified: a terminal diagnosis. American Journal of Hospice & Palliative Medicine 1996; 13(6): 38–44.

34.

Schonfeld

Stevens

Lampman

, et al. Assessing challenges in end-of-life conversations with elderly patients with multiple morbidities. American Journal of Hospice & Palliative Medicine 2012; 29(4): 260–267. DOI: 10.1177/1049909111418778.

35.

Murali

Merriman

, et al. Latent Class Analysis of Symptom Burden Among Seriously Ill Adults at the End of Life. Nursing Research 2021; 70(6): 443–454. DOI: 10.1097/NNR.0000000000000549.

36.

Portz

Kutner

Blatchford

, et al. High Symptom Burden and Low Functional Status in the Setting of Multimorbidity. Journal of the American Geriatrics Society 2017; 65(10): 2285–2289. DOI: 10.1111/jgs.15045.

37.

Murali

Merriman

, et al. Complex Care Needs at the End of Life for Seriously Ill Adults With Multiple Chronic Conditions. Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association 2023; 25(3): 146–155. DOI: 10.1097/NJH.0000000000000946.

38.

Murali

Merriman

, et al. Multiple Chronic Conditions among Seriously Ill Adults Receiving Palliative Care. Western Journal of Nursing Research 2023; 45(1): 14–24. DOI: 10.1177/01939459211041174.

39.

Mason

Boyd

Steyn

, et al. Computer screening for palliative care needs in primary care: a mixed-methods study. British Journal of General Practice 2018; 68(670): e360–e369. DOI: 10.3399/bjgp18X695729.

40.

Mason

Nanton

Epiphaniou

41.

Gabbard

Pajewski

Callahan

, et al. Effectiveness of a Nurse-Led Multidisciplinary Intervention vs Usual Care on Advance Care Planning for Vulnerable Older Adults in an Accountable Care Organization: A Randomized Clinical Trial. JAMA Intern Med 2021; 181(3): 361–369. DOI: 10.1001/jamainternmed.2020.5950.

42.

Stokes

Kristensen

Checkland

, et al. Does the impact of case management vary in different subgroups of multimorbidity? Secondary analysis of a quasi-experiment. BMC Health Services Research 2017; 17(1): 521. DOI: 10.1186/s12913-017-2475-x.

43.

Reinke

Vig

Tartaglione

, et al. Symptom Burden and Palliative Care Needs Among High-Risk Veterans With Multimorbidity. Journal of Pain & Symptom Management 2019; 57(5): 880–889. DOI: 10.1016/j.jpainsymman.2019.02.011.

44.

Wijers

IGM

Ayala

Rodriguez-Blazquez

, et al. The Disease Burden Morbidity Assessment in older adults and its association with mortality and other health outcomes. European Journal of Ageing 2019; 16(2): 193–203. DOI: 10.1007/s10433-018-0491-2.

45.

Hung

Y-S

Chen

C-H

Yeh

K-Y

, et al. Potential benefits of palliative care for polysymptomatic patients with late-stage nonmalignant disease in Taiwan. Journal of the Formosan Medical Association = Taiwan yi zhi 2013; 112(7): 406–415. DOI: 10.1016/j.jfma.2011.08.021.

46.

Kelley

Bollens-Lund

. Identifying the Population with Serious Illness: The “denominator” Challenge. Journal of Palliative Medicine 2018; 21(S2): S7–S16. DOI: 10.1089/jpm.2017.0548.

47.

Izumi

Basin

Presley

, et al. Feasibility and Acceptability of Nurse-Led Primary Palliative Care for Older Adults with Chronic Conditions: A Pilot Study. Journal of Palliative Medicine 2018; 21(8): 1114–1121. DOI: 10.1089/jpm.2017.0666.

48.

Nicholson

Davies

George

, et al. What are the main palliative care symptoms and concerns of older people with multimorbidity? a comparative cross-sectional study using routinely collected Phase of Illness, Australia-modified Karnofsky Performance Status and Integrated Palliative Care Outcome Scale data. Annals of Palliative Medicine 2018; 7(Suppl 3): S164–S175. DOI: 10.21037/apm.2018.06.07.

49.

Gómez-Batiste

Martínez-Muñoz

Blay

, et al. Prevalence and characteristics of patients with advanced chronic conditions in need of palliative care in the general population: A cross-sectional study. Palliative Medicine 2014; 28(4): 302–311. DOI: 10.1177/0269216313518266.

50.

Clarke

Korotchenko

Bundon

. The calendar is just about up': older adults with multiple chronic conditions reflect on death and dying. Ageing & Society 2012; 32(8): 1399–1417.

51.

Amblas-Novellas

Murray

Oller

, et al. Frailty degree and illness trajectories in older people towards the end-of-life: a prospective observational study. BMJ Open 2021; 1(4): e042645.

52.

Calam

Gwynn

Perkins

; The role of specialist palliative care in managing patients with multimorbidity. 2012;1(1):48-50.

53.

Gonzalez-Gonzalez

Schmucker

Nothacker

, et al. End-of-Life Care Preferences of Older Patients with Multimorbidity: A Mixed Methods Systematic Review. Journal of clinical medicine 2020; 10(1). DOI: 10.3390/jcm10010091.

54.

Llop-Medina

Garces-Ferrer

, et al. Palliative Care in Older People with Multimorbidities: A Scoping Review on the Palliative Care Needs of Patients, Carers, and Health Professionals. International Journal of Environmental Research & Public Health [Electronic Resource] 2022; 19(6): 08. DOI: 10.3390/ijerph19063195.

55.

Nicholson

Combes

Mold

, et al. Addressing inequity in palliative care provision for older people living with multimorbidity. Perspectives of community-dwelling older people on their palliative care needs: A scoping review. Palliative Medicine 2022: 2692163221118230. DOI: 10.1177/02692163221118230.

56.

The Gold Standards Framework . The Gold Standards Framework Proactive Identification Guidance (PIG). (Date Accessed 2022 Accessed, date last accessed). https://goldstandardsframework.org.uk/proactive-identification-guidance-pig

57.

Dahlqvist

Ekdahl

Friedrichsen

. Does comprehensive geriatric assessment (CGA) in an outpatient care setting affect the causes of death and the quality of palliative care? A subanalysis of the age-FIT study. European Geriatric Medicine 2019; 10(3): 455–462. DOI: 10.1007/s41999-019-00198-w.

58.

Cohn

. Advanced serious illness, multimorbidity, and multibeneficence: The role of communication. Journal of Evaluation in Clinical Practice 2018; 24(6): 1279–1281. DOI: 10.1111/jep.12706.

59.

Evans

Mackinnon

Pereira

, et al. Building capacity for palliative care delivery in primary care settings: Mixed-methods evaluation of the INTEGRATE Project. Canadian Family Physician 2021; 67(4): 270–278. DOI: 10.46747/cfp.6704270.

60.

Kelley

Swee

. Does this patient in long-term care (LTC) need a palliative care consult? Geriatric Nursing 2014; 35(6): 479–480. DOI: 10.1016/j.gerinurse.2014.10.006.

61.

Lakin

Desai

Engelman

, et al. Earlier identification of seriously ill patients: an implementation case series. BMJ Support Palliat Care 2020; 10(4): e31. DOI: 10.1136/bmjspcare-2019-001789.

62.

The University of Edinburgh . Supportive and Palliative Care Indicators Tool (SPICT™). (Date Accessed 2022 Accessed, date last accessed).https://www.spict.org.uk/

63.

Decker

Annweiler

Launay

, et al. Do not resuscitate orders and aging: Impact of multimorbidity on the decision-making process. Journal of Nutrition, Health & Aging 2014; 18(3): 330–335. DOI: 10.1007/s12603-014-0023-5.

64.

Llop-Medina

Rodenas-Rigla

Garces-Ferrer

, et al. The Experiences and Views on Palliative Care of Older People with Multimorbidities, Their Family Caregivers and Professionals in a Spanish Hospital. Healthcare (Basel, Switzerland) 2022; 10(12). DOI: 10.3390/healthcare10122489.

65.

Bernabeu-Wittel

Para

Voicehovska

, et al. Competences of internal medicine specialists for the management of patients with multimorbidity. EFIM multimorbidity working group position paper. European Journal of Internal Medicine 2023; 109: 97–106. DOI: 10.1016/j.ejim.2023.01.011.

66.

Powell

Silveira

. Palliative Care for Older Adults with Multimorbidity in the Time of COVID 19. Journal of Aging & Social Policy 2021; 33(4-5): 500–508. DOI: 10.1080/08959420.2020.1851436.

67.

Mayr

Plowman

Blakowski

, et al. Feasibility of a Home-Based Palliative Care Intervention for Elderly Multimorbid Survivors of Critical Illness. American Journal of Critical Care 2021; 30(1): e12–e31. DOI: 10.4037/ajcc2021117.

68.

Evans

. Community-based short-term integrated palliative care for older people with chronic noncancer conditions: A randomised controlled mixed method trial. Palliative Medicine 2021; 35(1 SUPPL): 7. DOI: 10.1177/02692163211035909.

69.

Moghaddam

Coxon

Nabarro

, et al. Unmet care needs in people living with advanced cancer: a systematic review. Support Care Cancer 2016; 24(8): 3609–3622. DOI: 10.1007/s00520-016-3221-3.

70.

Mitzel

Brown

Thomas

, et al. Patient-Centered Discussion on End-of-Life Care for Patients with Advanced COPD. Medicina (Kaunas) 2022; 58(2). DOI: 10.3390/medicina58020254.

71.

Remawi

Gadoud

Preston

. The experiences of patients with advanced heart failure, family carers, and health professionals with palliative care services: a secondary reflexive thematic analysis of longitudinal interview data. BMC Palliat Care 2023; 22(1): 115. DOI: 10.1186/s12904-023-01241-1.

72.

Guven

Yekeduz

Erul

, et al. The benefit of treatment beyond progression with immune checkpoint inhibitors: a multi-center retrospective cohort study. J Cancer Res Clin Oncol 2023; 149(7): 3599–3606. DOI: 10.1007/s00432-022-04268-8.

73.

Kavalieratos

Corbelli

Zhang

, et al. Association Between Palliative Care and Patient and Caregiver Outcomes: A Systematic Review and Meta-analysis. Jama 2016; 316(20): 2104–2114. DOI: 10.1001/jama.2016.16840.

74.

Luta

Ottino

Hall

, et al. Evidence on the economic value of end-of-life and palliative care interventions: a narrative review of reviews. BMC Palliative Care 2021; 20(1): 89. DOI: 10.1186/s12904-021-00782-7.

75.

Quinn

Shurrab

Gitau

, et al. Association of Receipt of Palliative Care Interventions With Health Care Use, Quality of Life, and Symptom Burden Among Adults With Chronic Noncancer Illness: A Systematic Review and Meta-analysis. Jama 2020; 324(14): 1439–1450. DOI: 10.1001/jama.2020.14205.

76.

Harrison

Kotwal

Smith

. Palliative Care for Patients With Noncancer Illnesses. Jama 2020; 324(14): 1404–1405. DOI: 10.1001/jama.2020.15075.

77.

Pati

MacRae

Henderson

, et al. Defining and measuring complex multimorbidity: a critical analysis. Br J Gen Pract 2023; 73(733): 373–376. DOI: 10.3399/bjgp23X734661.

78.

Abu-Odah

Molassiotis

Liu

JYW

. Global palliative care research (2002-2020): bibliometric review and mapping analysis. BMJ Support Palliat Care 2022; 12(4): 376–387. DOI: 10.1136/bmjspcare-2021-002982.

79.

Deng

Liu

Chen

, et al. Knowledge domain and emerging trends in multimorbidity and frailty research from 2003 to 2023: a scientometric study using citespace and VOSviewer. Health Econ Rev 2023; 13(1): 46. DOI: 10.1186/s13561-023-00460-9.

80.

National Institute for Health and Care Research . UK Standards for Public Involvement in Research. (Date Accessed, date last accessed). https://sites.google.com/nihr.ac.uk/pi-standards/home

81.

MacRae

Mercer

Henderson

, et al.; Age, sex, and socioeconomic differences in multimorbidity measured in four ways: UK primary care cross-sectional analysis. British Journal of General Practice BJGP 2023; 2022: 0405. DOI: 10.3399/bjgp.2022.0405.

82.

Barnett

Mercer

Norbury

, et al. Epidemiology of multimorbidity and implications for health care, research, and medical education: a cross-sectional study. Lancet 2012; 380(9836): 37–43. DOI: 10.1016/s0140-6736(12)60240-2.

83.

Cezard

McHale

Sullivan

, et al. Studying trajectories of multimorbidity: a systematic scoping review of longitudinal approaches and evidence. BMJ Open 2021; 11(11): e048485. DOI: 10.1136/bmjopen-2020-048485.

84.

Murtagh

Bausewein

Verne

, et al. How many people need palliative care? A study developing and comparing methods for population-based estimates. Palliat Med 2014; 28(1): 49–58. DOI: 10.1177/0269216313489367.

85.

Müller

Boehlke

, et al. Screening for Palliative Care Need in Oncology: Validation of Patient-Reported Outcome Measures. J Pain Symptom Manage 2023. DOI: 10.1016/j.jpainsymman.2023.12.013.

86.

Azcoaga-Lorenzo

Akbari

, et al. Variation in the estimated prevalence of multimorbidity: systematic review and meta-analysis of 193 international studies. BMJ Open 2022; 12(4): e057017. DOI: 10.1136/bmjopen-2021-057017.

87.

Fenning

Smith

Calderwood

. Realistic Medicine: Changing culture and practice in the delivery of health and social care. Patient Educ Couns 2019; 102(10): 1751–1755. DOI: 10.1016/j.pec.2019.06.024.

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