A core set of patient-reported outcomes for population-based cancer survivorship research: a consensus study.

A core set of patient-reported outcomes for population-based cancer survivorship research: a consensus study.
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DOI:
10.1007/s11764-020-00924-5
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发表时间:
2021-04
期刊:
Journal of cancer survivorship : research and practice
影响因子:
--
通讯作者:
Eckert M
Eckert M
中科院分区:
其他
文献类型:
--
作者:
Ramsey I;Corsini N;Hutchinson AD;Marker J;Eckert M

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核心结果集的目的是提高研究的一致性和质量,方法是就某一人群和某一环境应衡量的最低结果提供商定的建议。本研究旨在确定一组核心的患者报告结果(pro),这些结果代表了影响癌症幸存者长期健康、功能和生活质量的最重要问题,为基于人群的癌症幸存者研究提供信息。在第一阶段,通过对癌症幸存者(n = 40)的焦点小组(n = 5)和评估癌症幸存者生活质量的工具进行审查,得出了46个结果清单。在第二阶段,69位癌症生存实践、研究、政策和生活经验方面的国家专家参加了两轮德尔菲调查,以细化列出的结果并将其优先排序为核心结果集。举行了一次协商一致会议,与部分参与者讨论并最终确定所包括的成果。12个结果域被同意纳入核心结果集:抑郁、焦虑、疼痛、疲劳、认知问题、对癌症复发或进展的恐惧、日常活动和角色的功能、财务毒性、应对癌症、副作用的总体困扰、总体生活质量和总体健康状况。我们建立了一套核心的pro,以在人群水平上对癌症生存问题进行标准化评估。采用核心结局集将确保在未来的研究中对癌症幸存者认为重要的生存结局进行最低限度的评估。此外,它的常规使用将优化癌症幸存者在基于人群的研究中提供的数据的可比性、质量和有用性。
Core outcome sets aim to improve the consistency and quality of research by providing agreed-upon recommendations regarding what outcomes should be measured as a minimum for a population and setting. This study aimed to identify a core set of patient-reported outcomes (PROs) representing the most important issues impacting on cancer survivors’ long-term health, functioning, and quality of life, to inform population-based research on cancer survivorship. In phase I, a list of 46 outcomes was generated through focus groups (n = 5) with cancer survivors (n = 40) and a review of instruments for assessing quality of life in cancer survivorship. In phase II, 69 national experts in cancer survivorship practice, research, policy, and lived experience participated in a two-round Delphi survey to refine and prioritise the listed outcomes into a core outcome set. A consensus meeting was held with a sub-sample of participants to discuss and finalise the included outcomes. Twelve outcome domains were agreed upon for inclusion in the core outcome set: depression, anxiety, pain, fatigue, cognitive problems, fear of cancer recurrence or progression, functioning in everyday activities and roles, financial toxicity, coping with cancer, overall bother from side effects, overall quality of life, and overall health status. We established a core set of PROs to standardise assessment of cancer survivorship concerns at a population level. Adoption of the core outcome set will ensure that survivorship outcomes considered important by cancer survivors are assessed as a minimum in future studies. Furthermore, its routine use will optimise the comparability, quality, and usefulness of the data cancer survivors provide in population-based research.
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