Abstract
Background
Multiple long-term conditions (MLTCs), living with two or more long-term conditions (LTCs), often termed multimorbidity, has a high and increasing prevalence globally with earlier age of onset in people living in deprived communities. A holistic understanding of the patient’s perspective of the work associated with living with MLTCs is needed. This study aimed to synthesise qualitative evidence describing the experiences of people living with MLTCs and develop a greater understanding of the effect on people’s lives.
Methods
Three concepts (multimorbidity, burden and lived experience) were used to develop search terms. A broad qualitative filter was applied. MEDLINE (Ovid), EMBASE (Ovid), PsycINFO (EBSCO), CINAHL (EBSCO) and the Cochrane Library were searched from 2000-January 2023. We included studies where at least 50% of study participants were living with ≥ 3 LTCs and the lived experience of MLTCs was expressed from the patient perspective. Screening and quality assessment (CASP checklist) was undertaken by two independent researchers. Data was synthesised using an inductive approach. PPI (Patient and Public Involvement) input was included throughout.
Results
Of 30,803 references identified, 46 met the inclusion criteria. 28 studies (60%) did not mention ethnicity of participants and socioeconomic factors were inconsistently described. Only 2 studies involved low- and middle-income countries (LMICs). Eight themes of work emerged: learning and adapting; accumulation and complexity; symptoms; emotions; investigation and monitoring; health service and administration; medication; and finance. The quality of studies was generally high. 41 papers had no PPI involvement reported and none had PPI contributor co-authors.
Conclusions
The impact of living with MLTCs was experienced as a multifaceted and complex workload involving multiple types of work, many of which are reciprocally linked. Much of this work, and the associated impact on patients, may be not apparent to healthcare staff, and current health systems and policies are poorly equipped to meet the needs of this growing population. There was a paucity of data from LMICs and insufficient information on how patient characteristics might influence experiences. Future research should involve patients as partners and focus on these evidence gaps.