Tanco Kimberson, Park Ji Chan, Cerana Agustina, Sisson Amy, Sobti Nikhil, Bruera Eduardo
Department of Palliative Care and Rehabilitation Medicine,The University of Texas MD Anderson Cancer Center,Houston,Texas.
Division of Hematology/Oncology,Department of Internal Medicine,Daejeon St. Mary's Hospital,College of Medicine,The Catholic University of Korea,Republic of Korea.
Palliat Support Care. 2017 Feb;15(1):110-124. doi: 10.1017/S1478951516000079. Epub 2016 Mar 29.
Caregivers of cancer patients face intense demands throughout the course of the disease, survivorship, and bereavement. Caregiver burden, needs, satisfaction, quality of life, and other significant areas of caregiving are not monitored regularly in the clinic setting, resulting in a need to address the availability and clinical effectiveness of cancer caregiver distress tools. This review aimed to determine the availability of cancer caregiver instruments, the variation of instruments between different domains of distress, and that between adult and pediatric cancer patient populations.
A literature search was conducted using various databases from 1937 to 2013. Original articles on instruments were extracted separately if not included in the original literature search. The instruments were divided into different areas of caregiver distress and into adult versus pediatric populations. Psychometric data were also evaluated.
A total of 5,541 articles were reviewed, and 135 articles (2.4%) were accepted based on our inclusion criteria. Some 59 instruments were identified, which fell into the following categories: burden (n = 26, 44%); satisfaction with healthcare delivery (n = 5, 8.5%); needs (n = 14, 23.7%); quality of life (n = 9, 15.3%); and other issues (n = 5, 8.5%). The median number of items was 29 (4-125): 20/59 instruments (33.9%) had ≤20 items; 13 (22%) had ≤20 items and were psychometrically sound, with 12 of these 13 (92.3%) being self-report questionnaires. There were 44 instruments (74.6%) that measured caregiver distress for adult cancer patients and 15 (25.4%) for caregivers of pediatric patients.
There is a significant number of cancer caregiver instruments that are self-reported, concise, and psychometrically sound, which makes them attractive for further research into their clinical use, outcomes, and effectiveness.
癌症患者的照料者在疾病的整个过程、康复期及丧亲期间都面临着巨大的需求。在临床环境中，照料者的负担、需求、满意度、生活质量及其他重要的照料领域并未得到定期监测，因此有必要探讨癌症照料者困扰评估工具的可得性及临床有效性。本综述旨在确定癌症照料者评估工具的可得性、不同困扰领域之间评估工具的差异，以及成人与儿童癌症患者群体之间评估工具的差异。
使用多个数据库对1937年至2013年的文献进行检索。若原始文献检索未涵盖有关评估工具的原始文章，则单独提取。将评估工具按照料者困扰的不同领域以及成人与儿童群体进行分类。同时还评估了心理测量数据。
共检索了5541篇文章，根据纳入标准接受了135篇文章（2.4%）。共识别出约59种评估工具，分为以下几类：负担（n = 26，44%）；对医疗服务的满意度（n = 5，8.5%）；需求（n = 14，23.7%）；生活质量（n = 9，15.3%）；以及其他问题（n = 5，8.5%）。项目数量的中位数为29（4 - 125）：59种评估工具中有20种（33.9%）项目数≤20；13种（22%）项目数≤20且心理测量可靠，其中这13种中有12种（92.3%）为自填式问卷。有44种评估工具（74.6%）用于测量成年癌症患者照料者的困扰，15种（25.4%）用于测量儿童患者照料者的困扰。
有大量癌症照料者评估工具为自填式、简洁且心理测量可靠，这使其对进一步研究其临床应用、结果及有效性具有吸引力。
