前瞻性队列研究晚期癌症患者及其家属的护理质量和生活体验（eQuiPe 研究）：研究方案。
Prospective cohort study of patients with advanced cancer and their relatives on the experienced quality of care and life (eQuiPe study): a study protocol.
机构信息
The Netherlands Comprehensive Cancer Organization, PO Box 19079, 3501 DB, Utrecht, The Netherlands.
CoRPS - Center of Research on Psychology in Somatic Diseases, Department of Medical and Clinical Psychology, Tilburg University, Tilburg, The Netherlands.
出版信息
BMC Palliat Care. 2020 Sep 9;19(1):139. doi: 10.1186/s12904-020-00642-w.
BACKGROUND
Palliative care is becoming increasingly important because the number of patients with an incurable disease is growing and their survival is improving. Previous research tells us that early palliative care has the potential to improve quality of life (QoL) in patients with advanced cancer and their relatives. According to limited research on palliative care in the Netherlands, patients with advanced cancer and their relatives find current palliative care suboptimal. The aim of the eQuiPe study is to understand the experienced quality of care (QoC) and QoL of patients with advanced cancer and their relatives to further improve palliative care.
METHODS
A prospective longitudinal observational cohort study is conducted among patients with advanced cancer and their relatives. Patients and relatives receive a questionnaire every 3 months regarding experienced QoC and QoL during the palliative trajectory. Bereaved relatives receive a final questionnaire 3 to 6 months after the patients' death. Data from questionnaires are linked with detailed clinical data from the Netherlands Cancer Registry (NCR). By means of descriptive statistics we will examine the experienced QoC and QoL in our study population. Differences between subgroups and changes over time will be assessed while adjusting for confounding factors.
DISCUSSION
This study will be the first to prospectively and longitudinally explore experienced QoC and QoL in patients with advanced cancer and their relatives simultaneously. This study will provide us with population-based information in patients with advanced cancer and their relatives including changes over time. Results from the study will inform us on how to further improve palliative care.
TRIAL REGISTRATION
Trial NL6408 ( NTR6584 ). Registered in Netherlands Trial Register on June 30, 2017.
背景
姑息治疗变得越来越重要，因为患有不治之症的患者人数正在增加，他们的存活率也在提高。以前的研究告诉我们，早期姑息治疗有可能改善晚期癌症患者及其家属的生活质量（QoL）。根据荷兰对姑息治疗的有限研究，晚期癌症患者及其家属认为目前的姑息治疗不尽如人意。eQuiPe 研究的目的是了解晚期癌症患者及其家属所经历的护理质量（QoC）和生活质量，以进一步改善姑息治疗。
方法
对晚期癌症患者及其家属进行前瞻性纵向观察队列研究。患者和家属每 3 个月就姑息治疗过程中经历的 QoC 和 QoL 接受一次问卷调查。患者去世 3 至 6 个月后，丧亲的家属会收到最后一份问卷。问卷中的数据与荷兰癌症登记处（NCR）的详细临床数据相关联。通过描述性统计，我们将检查我们研究人群中经历的 QoC 和 QoL。在调整混杂因素的同时，将评估亚组之间的差异和随时间的变化。
讨论
这项研究将首次前瞻性和纵向地同时探索晚期癌症患者及其家属的经历 QoC 和 QoL。这项研究将为我们提供晚期癌症患者及其家属的基于人群的信息，包括随时间的变化。研究结果将告知我们如何进一步改善姑息治疗。
试验注册
NL6408 试验（NTR6584）。2017 年 6 月 30 日在荷兰试验登记处注册。
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