Division of Nursing and Midwifery, Health Sciences School, University of Sheffield, Sheffield, UK.
The Glenfield Hospital, University Hospitals of Leicester NHS Trust, Leicester, UK.
Palliat Med. 2021 Jun;35(6):1039-1051. doi: 10.1177/02692163211007379. Epub 2021 Apr 8.
People with mesothelioma and their families have palliative care needs throughout the relatively short trajectory of their illness.
To describe the palliative care needs and experiences of people with mesothelioma and their family carers.
Integrative systematic review with narrative synthesis (PROSPERO: CRD42020190115).
MEDLINE, CINAHL, PsycINFO and the Cochrane Library were searched for articles published between 01 January 2000 and 10 May 2020. Articles were included if they presented empirical studies or comprehensive reviews including information about the palliative care needs and experiences of people with mesothelioma and their family carers.
The search yielded 508 articles, 14 were included in the analysis. A cross cutting theme of 'uncertainty' was identified encompassing five themes: (1) organisation and co-ordination of services, (2) communication and information needs, (3) management of care needs and high symptom burden, (4) consideration of the impact of seeking compensation and (5) family carer needs. Our findings demonstrate that people with mesothelioma want a co-ordinated, team-based approach to palliative care with a named point of contact. Whilst carers value and benefit from early referral to specialist palliative care, this does not necessarily reflect the outcomes and views of patients.
The evidence base around the palliative care needs and experiences of people with mesothelioma and their carers needs to be strengthened. The results of this review support the need to develop a greater understanding about the role non-specialist palliative care clinicians' play in providing generalist palliative care for people with mesothelioma and their carers.
间皮瘤患者及其家属在相对较短的疾病病程中存在姑息治疗需求。
描述间皮瘤患者及其家属的姑息治疗需求和体验。
综合系统评价与叙述性综合（PROSPERO：CRD42020190115）。
在 2000 年 1 月 1 日至 2020 年 5 月 10 日期间，检索 MEDLINE、CINAHL、PsycINFO 和 Cochrane 图书馆的文章，纳入报告间皮瘤患者及其家属姑息治疗需求和体验的实证研究或综合综述。
检索出 508 篇文章，其中 14 篇被纳入分析。确定了一个贯穿全文的主题“不确定性”，包含五个主题：（1）服务的组织和协调，（2）沟通和信息需求，（3）护理需求和高症状负担的管理，（4）对寻求赔偿的考虑，（5）家属照顾者的需求。我们的研究结果表明，间皮瘤患者希望姑息治疗采用协调的、以团队为基础的方法，并指定一个联系人。虽然照顾者重视并受益于早期转介至专科姑息治疗，但这并不一定反映患者的结果和意见。
需要加强间皮瘤患者及其照顾者姑息治疗需求和体验的证据基础。本综述的结果支持需要进一步了解非专科姑息治疗临床医生在为间皮瘤患者及其照顾者提供全科姑息治疗方面所扮演的角色。
