缩小差距:罗马尼亚和瑞士晚期癌症患者姑息关怀干预未满足需求现实图研究的协议制定、实施挑战和经验教训

IF 1.4 Q4 MEDICINE, RESEARCH & EXPERIMENTAL Contemporary Clinical Trials Communications Pub Date : 2024-09-17 DOI:10.1016/j.conctc.2024.101360
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引用次数: 0

摘要

背景晚期癌症患者有许多症状和需求,需要姑息治疗干预(PCI)。找出PCI需求与经验提供之间的差距可以改善医疗服务,并将差距与质量指标(QI)联系起来。罗马尼亚(RO)-瑞士(CH)多中心现实地图研究根据需求概念和文化适应性质量指标(QI)实施了一项新方案。方法应用瑞士的质量保证标准,开发了一个交互式绘图指南,用于测量未满足的六个月内每月 PCIs 需求、患者特征(认知、EAPC 基本数据集、Cofactors)和 QI(不恰当的抗癌治疗、高症状负担 [IPOS、EQ5D]、重复急诊入院、积极的生命末期护理和临终质量)。还规划了一个综合终点(质量指标、辅助因素)。结果从 308 名患者(瑞士:262 人,中国:46 人,平均年龄 62 岁,74% ECOG PS 1&2,81% 正在接受抗癌治疗)的基线和首次随访数据中发现了主要差距(症状管理、精神需求、家庭支持)、国家差异(如对疾病的理解、精神需求)以及差距数量与抑郁的显著关联。后来的数据变得越来越少,有关质量保证的数据质量也参差不齐,显示出在研究能力、资源和过于复杂的质量保证工具的适用性方面存在差距。尽管如此,未满足需求的数据促进了当地的主动行动,81 名患者参与了可行性研究。最后,联合经验促进了学术发展和国家将姑息关怀纳入肿瘤学的进程。结论将积极性和热情与更适度的目标相结合,对所有结果进行可行性测试,并对研究能力进行投资,可以消除差距。
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Constricting Gaps: Protocol development, implementation challenges and lessons learned for the reality map of unmet needs for Palliative Care Interventions in advanced cancer patients study in Romania and Switzerland

Background

Patients with advanced cancer experience many symptoms and needs requiring a Palliative Care Intervention (PCI). Identifying gaps between needs for PCIs and experienced delivery may improve health care, furthermore the association of gaps with quality indicators (QI). The multicentre Romanian (RO)-Swiss (CH) reality map study implemented a novel protocol based on needs concepts and culturally adapted quality indicators (QI).

Methods

An interactive mapping guide measuring unmet needs for PCIs monthly over six months, patient characteristics (cognition, EAPC basic data set, Cofactors) and QI (Inappropriate Anticancer Treatment, High Symptom Burden [IPOS, EQ5D], Repeated ER Admissions, Aggressive End-of-Life Care, and Quality of Death-and-Dying) were developed, applying swiss standards for quality assurance. A composite endpoint (QI, cofactors) was planned. Finally, local solutions responding to gaps were piloted.

Results

From 308 patients (RO: 262, CH: 46, age 62j [mean], 74 % ECOG PS 1&2, 81 % current anticancer treatment) baseline and first follow-up data revealed main gaps (symptom management, spiritual needs, family support), country differences (e.g. illness understanding, spiritual needs) and a significant association of the number of gaps with depression. Later data become less, and data quality on QI variable, revealing gaps in research conduct competences, resources, and applicability of over-sophisticated quality assurance tools. Nevertheless, the unmet needs data promoted local initiatives, 81 patients participated in feasibility studies. Finally, the joint experience stimulated academic developments and national integration of palliative care into oncology.

Conclusions

Pairing motivation and enthusiasm with more modest aims, feasibility testing of all outcomes and investment in research competences may disperse gaps.

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来源期刊
Contemporary Clinical Trials Communications
Contemporary Clinical Trials Communications Pharmacology, Toxicology and Pharmaceutics-Pharmacology
CiteScore
2.70
自引率
6.70%
发文量
146
审稿时长
20 weeks
期刊介绍: Contemporary Clinical Trials Communications is an international peer reviewed open access journal that publishes articles pertaining to all aspects of clinical trials, including, but not limited to, design, conduct, analysis, regulation and ethics. Manuscripts submitted should appeal to a readership drawn from a wide range of disciplines including medicine, life science, pharmaceutical science, biostatistics, epidemiology, computer science, management science, behavioral science, and bioethics. Contemporary Clinical Trials Communications is unique in that it is outside the confines of disease specifications, and it strives to increase the transparency of medical research and reduce publication bias by publishing scientifically valid original research findings irrespective of their perceived importance, significance or impact. Both randomized and non-randomized trials are within the scope of the Journal. Some common topics include trial design rationale and methods, operational methodologies and challenges, and positive and negative trial results. In addition to original research, the Journal also welcomes other types of communications including, but are not limited to, methodology reviews, perspectives and discussions. Through timely dissemination of advances in clinical trials, the goal of Contemporary Clinical Trials Communications is to serve as a platform to enhance the communication and collaboration within the global clinical trials community that ultimately advances this field of research for the benefit of patients.
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