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

Conference:

SAPC ASM 2024 - Bristol

Talk Code:

3B.2

Presenter:

Emilia Holland and Lynn Laidlaw

Co-authors:

Dr Kate Matthews(1), Prof Sara Macdonald(2), Prof Mark Ashworth(3), Lynn Laidlaw(4), Kelly Sum Yuet Cheung(5), Dr Sebastian Stannard(1), Prof Nick A. Francis(1), Prof Frances S Mair(2), Rita Rajababoo(4), Saroj Parekh(4), Charlotte Gooding(1), Prof Nisreen A Alwan(1,5,6), Prof Simon DS Fraser(1)

Author institutions:

(1)University of Southampton, (2)University of Glasgow, (3)King’s College London, (4)Patient and Public Involvement (PPI) member, (5)University Hospital Southampton NHS Foundation Trust, (6)NIHR Applied Research Collaboration Wessex

Problem

Multiple long-term conditions (MLTCs), living with two or more long-term conditions (LTCs) and often termed multimorbidity, has a high and increasing prevalence in many countries with earlier age of onset in people living in deprived communities. A holistic understanding of the patient’s perspective of the work associated with living with MLTCs is needed. The aim of this study was to synthesise qualitative evidence describing the experiences of people living with MLTCs in order to develop a greater understanding of the effect on people’s lives.

Approach

Three concepts (multimorbidity, burden and lived experience) were used to develop search terms. A broad qualitative filter was applied. MEDLINE (Ovid), EMBASE (Ovid), PsycINFO (EBSCO), CINAHL (EBSCO) and the Cochrane Library were searched. We included studies where at least 50% of study participants were living with three or more long-term conditions and the lived experience of multimorbidity was expressed from the patient perspective. We excluded studies published before 2000 and those not in English. Screening and quality assessment (CASP checklist) was undertaken by two independent researchers. Line-by-line coding was undertaken in NVivo, and data was synthesised using an inductive approach. PPI input was included throughout the course of the study, from development of the research questions and search terms through to qualitative data analysis.

Findings

In total 23010 unique studies were screened and 46 studies met the inclusion criteria. Eight themes of work (a term reflected in the sociological literature and preferred by PPI colleagues in this study to the word 'burden') emerged which characterised the impact of living with MLTCs: learning and adapting (learning about LTCs and their management; physical and psychological adaptations including biographical work), accumulation and complexity (the additional work and complications associated with living with more than one LTC), symptoms, emotions, investigation and monitoring, health service and administration, medication, and finance. The quality of studies was generally high. All studies covered between five and eight of the eight themes. 41 of the included 46 papers had no PPI involvement reported and there were no clear PPI contributor co-authors. Reporting of PPI did not involve public contributors, often lacked detail and provided no evidence of the process or methods used.

Consequences

This study found that multiple themes of work, many of which are reciprocally linked, influence the holistic lived experience for people living with MLTCs. The patient experience of living with MLTCs is determined by the unique combination of their long-term conditions within a personal context of numerous other wide-ranging factors. Much of this work, and the associated impact on patients, may be not apparent to healthcare staff unless specifically asked about. Current health services and policies are not meeting the needs of this growing group of patients.

Submitted by:

Emilia Holland

Funding acknowledgement:

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