Holland Emilia, Matthews Kate, Macdonald Sara, Ashworth Mark, Laidlaw Lynn, Cheung Kelly Sum Yuet, Stannard Sebastian, Francis Nick A, Mair Frances S, Gooding Charlotte, Alwan Nisreen A, Fraser Simon D S
School of Primary Care, Population Sciences and Medical Education, Faculty of Medicine, University of Southampton, Southampton General Hospital, Tremona Road, Southampton, SO16 6YD, UK.
General Practice & Primary Care, School of Health and Wellbeing, University of Glasgow, Glasgow, UK.
BMC Public Health. 2024 Dec 18;24(1):3446. doi: 10.1186/s12889-024-20763-8.
Multiple long-term conditions (MLTCs), living with two or more long-term conditions (LTCs), often termed multimorbidity, has a high and increasing prevalence globally with earlier age of onset in people living in deprived communities. A holistic understanding of the patient's perspective of the work associated with living with MLTCs is needed. This study aimed to synthesise qualitative evidence describing the experiences of people living with MLTCs (multimorbidity) and to develop a greater understanding of the effect on people's lives and ways in which living with MLTCs is 'burdensome' for people.
Three concepts (multimorbidity, burden and lived experience) were used to develop search terms. A broad qualitative filter was applied. MEDLINE (Ovid), EMBASE (Ovid), PsycINFO (EBSCO), CINAHL (EBSCO) and the Cochrane Library were searched from January 2000-January 2023. We included studies where at least 50% of study participants were living with three or more LTCs and the lived experience of MLTCs was expressed from the patient perspective. Screening and quality assessment (CASP checklist) was undertaken by two independent researchers. Data was synthesised using an inductive approach. PPI (Patient and Public Involvement) input was included throughout.
Of 30,803 references identified, 46 met the inclusion criteria. 31 studies (67%) did not mention ethnicity or race of participants and socioeconomic factors were inconsistently described. Only two studies involved low- and middle-income countries (LMICs). Eight themes of work were generated: learning and adapting; accumulation and complexity; symptoms; emotions; investigation and monitoring; health service and administration; medication; and finance. The quality of studies was generally high. 41 papers had no PPI involvement reported and none had PPI contributor co-authors.
The impact of living with MLTCs was experienced as a multifaceted and complex workload involving multiple types of work, many of which are reciprocally linked. Much of this work, and the associated impact on people, may not be apparent to healthcare staff, and current health systems and policies are poorly equipped to meet the needs of this growing population. There was a paucity of data from LMICs and insufficient information on how patient characteristics might influence experiences. Future research should involve patients as partners and focus on these evidence gaps.
多种长期病症（MLTCs），即患有两种或更多种长期病症（LTCs），通常称为多病共存，在全球范围内的患病率很高且呈上升趋势，在贫困社区生活的人群中发病年龄更早。需要从整体上了解患者对与患有MLTCs相关工作的看法。本研究旨在综合描述患有MLTCs（多病共存）人群经历的定性证据，并加深对其对人们生活的影响以及MLTCs给人们带来“负担”的方式的理解。
使用三个概念（多病共存、负担和生活经历）来制定检索词。应用了广泛的定性筛选标准。检索了2000年1月至2023年1月期间的MEDLINE（Ovid）、EMBASE（Ovid）、PsycINFO（EBSCO）、CINAHL（EBSCO）和Cochrane图书馆。我们纳入了至少50%的研究参与者患有三种或更多种LTCs且从患者角度表达了MLTCs生活经历 的研究。由两名独立研究人员进行筛选和质量评估（CASP清单）。使用归纳法对数据进行综合分析。全程纳入了患者和公众参与（PPI）的意见。
在识别出的30803篇参考文献中，46篇符合纳入标准。31项研究（67%）未提及参与者的种族或民族，社会经济因素的描述也不一致。只有两项研究涉及低收入和中等收入国家（LMICs）。产生了八个工作主题：学习与适应；积累与复杂性；症状；情绪；调查与监测；卫生服务与管理；药物治疗；以及财务。研究质量总体较高。41篇论文未报告有PPI参与，且没有PPI贡献者作为共同作者。
患有MLTCs的影响被体验为一种多方面且复杂的工作量，涉及多种类型的工作，其中许多工作相互关联。这项工作中的许多内容以及对人们的相关影响，医护人员可能并不明显，而且当前的卫生系统和政策在满足这一不断增长的人群的需求方面能力不足。来自LMICs的数据匮乏，关于患者特征如何影响体验的信息也不足。未来的研究应让患者作为合作伙伴参与，并关注这些证据空白。
