Surgical and Translational Research Centre, Faculty of Medical and Health Sciences, University of Auckland, Auckland, New Zealand.
Population Health Sciences Institute, Newcastle University Centre for Cancer, Newcastle University, Newcastle, UK.
Support Care Cancer. 2022 Dec 22;31(1):74. doi: 10.1007/s00520-022-07468-7.
Informal caregivers play an important supportive care role for patients with cancer. This may be especially true for pancreatic cancer which is often diagnosed late, has a poor prognosis and is associated with a significant symptom burden. We systematically reviewed the evidence on caregiver burden, unmet needs and quality-of-life of informal caregivers to patients with pancreatic cancer.
PubMed, Medline, CINAHL and Embase databases were systematically searched on 31 August 2021. Qualitative and quantitative data on informal caregivers' experiences were extracted and coded into themes of burden, unmet needs or quality-of-life with narrative synthesis of the data undertaken.
Nine studies (five qualitative, four quantitative), including 6023 informal caregivers, were included in the review. We categorised data into three key themes: caregiver burden, unmet needs and quality-of-life. Data on caregiver burden was organised into a single subtheme relating to symptom management as a source of burden. Data on unmet needs was organised into three subthemes need for: better clinical communication; support and briefings for caregivers; and help with navigating the health care system. Data on quality-of-life indicate large proportions of informal caregivers experience clinical levels of anxiety (33%) or depression (12%-32%). All five qualitative studies were graded as good quality; three quantitative studies were poor quality, and one was fair quality.
High-quality pancreatic cancer care should consider the impacts of informal caregiving. Prospective longitudinal studies examining multiple dimensions of caregiver burden, needs, and quality-of-life would be valuable at informing supportive care cancer delivery to pancreatic cancer informal caregivers.
非专业照护者在癌症患者的支持性护理中发挥着重要作用。这在胰腺癌中尤其如此，因为胰腺癌通常诊断较晚，预后较差，且与显著的症状负担相关。我们系统地回顾了关于胰腺癌患者非专业照护者负担、未满足需求和生活质量的证据。
我们于 2021 年 8 月 31 日系统地检索了 PubMed、Medline、CINAHL 和 Embase 数据库。提取了非专业照护者经历的定性和定量数据，并将其编码为负担、未满足需求或生活质量的主题，对数据进行了叙述性综合。
共有 9 项研究（5 项定性研究，4 项定量研究），包括 6023 名非专业照护者，纳入了本综述。我们将数据分为三个关键主题：照护者负担、未满足的需求和生活质量。关于照护者负担的数据组织成一个单一的子主题，即症状管理是负担的来源。关于未满足需求的数据组织成三个子主题：更好的临床沟通的需求；对照护者的支持和介绍；以及帮助应对医疗保健系统。关于生活质量的数据表明，很大比例的非专业照护者经历着临床水平的焦虑（33%）或抑郁（12%-32%）。所有 5 项定性研究的质量均为良好；3 项定量研究的质量较差，1 项为中等质量。
高质量的胰腺癌护理应考虑非专业照护的影响。前瞻性纵向研究检查照护者负担、需求和生活质量的多个维度将有助于为胰腺癌非专业照护者提供支持性护理。
