Understanding the quality of life (QOL) issues in survivors of cancer: towards the development of an EORTC QOL cancer survivorship questionnaire

Understanding the quality of life (QOL) issues in survivors of cancer: towards the development of an EORTC QOL cancer survivorship questionnaire
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DOI:
10.1186/s12955-018-0920-0
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发表时间:
2018-06-04
影响因子:
3.6
通讯作者:
van de Poll-Franse, Lonneke, V
van de Poll-Franse, Lonneke, V
中科院分区:
医学3区
文献类型:
--
作者:
Van Leeuwen, Marieke;Husson, Olga;van de Poll-Franse, Lonneke, V

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背景:癌症幸存者的数量正在稳步增长,临床试验的设计包括长期随访,不仅评估生存率,还评估晚期效应和健康相关的生活质量(HRQOL)。因此,必须制定患者报告结局指标(PROM),以捕获与无疾病取消幸存者相关的所有问题。该项目的目标是1)开发一个欧洲癌症研究和治疗组织(EORTC)问卷,该问卷涵盖与无病癌症幸存者相关的所有身体、精神和社会HROOL问题; 2)确定自治疗完成后应使用问卷的最短时间。方法:我们回顾了134篇关于癌症生存率的出版物,并采访了欧洲14个国家的117名患有11种不同类型癌症的无疾病癌症幸存者,以生成与癌症幸存者相关的HRQOL问题的详尽临时列表。由此产生的问题列表,EORTC核心问卷(QLQ-C30),并现场具体的问卷模块完成了第二组的458 survivor.Results:我们确定了116个通用生存问题。这些问题包括身体形象,认知功能,健康行为,消极和积极的前景,健康困扰,心理健康,疲劳,睡眠问题,身体功能,疼痛,一些身体症状,社会功能和性问题。患者评价大多数癌症的急性症状及其治疗(如恶心)不再相关约一年后完成treatment.Conclusions:现有的癌症生存率问卷相比,我们的研究结果强调了相关的评估问题的相关性慢性物理治疗的副作用,如神经病变和关节疼痛。我们将进一步为治疗后至少一年的无疾病成年癌症幸存者开发一个coie生存调查问卷和三个位点特异性模块。
Backround: The number of cancer survivors is growing steadily and increasingly, clinical trials are being designed to include long-term follow-up to assess not only survival, but also late effects and health-related quality of life (HRQOL). Therefore it is is essential to develop patient reported outcome measures (PROMs) that capture the full range of issues relevant to disease free cancel survivors. The objectives of this project are 1) to develop a European Organisation for Research and Treatment of Cancer (EORTC) questionnaire that captures the full range of physical, mental and social HROOL issues relevant to disease free cancer survivors, and 2) to determine at which minimal time since completion of treatment the questionnaire should be used.Methods: We reviewed 134 publications on cancer survivorship and interviewed 117 disease-free cancer survivors with 11 different types of cancer across 14 countries in Europe to generate an exhaustive, provisional list of HRQOL issues relevant to cancer survivors. The resulting issue list, the EORTC core questionnaire (QLQ-C30), and site specific questionnaire modules were completed by a second group of 458 survivors.Results: We identified 116 generic survivorship issues. These issues covered body image, cognitive functioning, health behaviors, negative and positive outlook, health distress, mental health, fatigue, sleep problems, physical functioning, pain, several physical symptoms, social functioning, and sexual problems. Patients rated most of the acute symptoms of cancer and its treatment (e.g. nausea) as no longer relevant approximately one year after completion of treatment.Conclusions: Compared to existing cancer survivorship questionnaires, our findings underscore the relevance of assessing issues related to chronic physical side effects of treatment such as neuropathy and joint pain. We will further develop a coie survivorship questionnaire and three site-specific modules for disease free adult cancer survivors who are at least one year post-treatment.