University of Sheffield, Division of Nursing and Midwifery, Health Sciences School, Barber House, 3 Clarkehouse Road, Sheffield, S10 2LA, United Kingdom.
Eur J Oncol Nurs. 2022 Jun;58:102122. doi: 10.1016/j.ejon.2022.102122. Epub 2022 Mar 23.
Mesothelioma is a rare and incurable cancer linked to asbestos exposure. It primarily affects the pleura. This systematic rapid review aimed to identify what is known about the experience of living with mesothelioma, from the perspective of patients and their informal carers.
Medline, PsycInfo, Scopus and the Cumulative Index to Nursing and Allied Health Literature were searched for empirical studies published between December 2008 and October 2020. Google Scholar was searched. The inclusion criteria stated that studies were peer-reviewed, reported the experience of living with mesothelioma from the perspective of patients and carers and written in English. The Mixed-Methods Appraisal Tool was used to assess quality. The review protocol is registered on PROSPERO: CRD42020204726.
Twenty-five studies met the inclusion criteria. Following data extraction, a narrative synthesis identified three themes: the impact on the individual; the impact on informal carers and relationships; and interactions with professionals and systems. The physical and psychological symptom burden of mesothelioma on patients' lives was reported as high. Both the qualitative and quantitative literature highlighted that patients and carers may have different needs throughout the mesothelioma journey. Differences included psychological experiences and preferences regarding the timing of information and support provision. Patients and carers expected their health care professionals to be knowledgeable about mesothelioma or refer to those who were. Health care professionals that were compassionate, honest and supportive also positively influenced the experience of patients and carers living with mesothelioma. A lack of communication or misinformation was damaging to the patient-healthcare professional relationship. Continuity of care, coordinated care and good communication between treatment centres were widely reported as important in the literature. Fragmented care was identified as detrimental to the patient experience, increasing anxiety in patients. However, relationships with professionals were not only important in terms of co-ordinating care. There was also evidence that good relationships with healthcare professionals were beneficial to coping with the mesothelioma diagnosis.
The volume of mesothelioma experience research has grown over the past decade. This has led to our growing understanding of the complex needs and experiences of mesothelioma patients and carers. However, this review identified several evidence gaps.
间皮瘤是一种罕见且无法治愈的癌症，与石棉暴露有关。它主要影响胸膜。本系统快速审查旨在从患者及其非正规护理人员的角度确定与间皮瘤患者生存相关的已知信息。
检索了 Medline、PsycInfo、Scopus 和 Cumulative Index to Nursing and Allied Health Literature 上 2008 年 12 月至 2020 年 10 月期间发表的实证研究。还在 Google Scholar 上进行了搜索。纳入标准规定，研究必须经过同行评审，从患者和护理人员的角度报告间皮瘤生存体验，并且以英文发表。使用混合方法评估工具评估质量。审查方案已在 PROSPERO：CRD42020204726 上注册。
符合纳入标准的研究有 25 项。经过数据提取，叙述性综合分析确定了三个主题：对个人的影响；对非正规护理人员和关系的影响；以及与专业人员和系统的互动。间皮瘤对患者生活的身体和心理症状负担被报道为很高。定性和定量文献都强调，患者和护理人员在间皮瘤治疗过程中可能有不同的需求。这些差异包括心理体验以及对信息和支持提供时间的偏好。患者和护理人员希望他们的医疗保健专业人员了解间皮瘤或转介给了解间皮瘤的人。富有同情心、诚实和支持的医疗保健专业人员也对间皮瘤患者和护理人员的生存体验产生积极影响。缺乏沟通或信息错误对医患关系造成了损害。文献中广泛报道了治疗中心之间的连续性护理、协调护理和良好沟通的重要性。碎片化护理被认为对患者体验有害，增加了患者的焦虑。然而，与专业人员的关系不仅在协调护理方面很重要。还有证据表明，与医疗保健专业人员建立良好的关系有助于应对间皮瘤诊断。
过去十年间，间皮瘤经验研究的数量有所增加。这使得我们对间皮瘤患者和护理人员的复杂需求和体验有了更多的了解。然而，本审查发现了几个证据空白。
