“我原以为自己有子宫肌瘤，现在却没有了”：一项关于子宫肉瘤患者健康相关生活质量的混合方法研究
'I thought I had fibroids, and now I don't': a mixed method study on health-related quality of life in uterine sarcoma patients.
作者信息
den Hollander Dide, Lidington Emma, Singer Susanne, Sodergren Samantha C, Salah Samer, Fiore Marco, Benson Charlotte, Desar Ingrid M E, Burgers Vivian W G, Husson Olga, van der Graaf Winette T A
机构信息
Department of Medical Oncology, Netherlands Cancer Institute, Antoni Van Leeuwenhoek, Amsterdam, The Netherlands.
Department of Medical Oncology, Radboud University Medical Center, Nijmegen, The Netherlands.
出版信息
Health Qual Life Outcomes. 2022 Apr 20;20(1):65. doi: 10.1186/s12955-022-01971-5.
BACKGROUND
Uterine sarcomas are rare subtypes of primary urogenital tumours and need tailored treatment. This study aimed to examine the impact of diagnosis and treatment on health-related quality of life (HRQoL) in patients with uterine sarcoma and measures available to assess HRQoL in this group.
METHODS
Thirteen patients with uterine sarcoma and 23 health care professionals were purposively sampled from sarcoma reference centers and participated in a semi-structured interview exploring HRQoL. Patients were also asked to review the EORTC QLQ-C30 and EORTC QLQ-EN24 for relevance. Data were analysed using thematic analysis and descriptive statistics.
RESULTS
The most commonly reported physical health issues were related to sexual dysfunction and urological symptoms. Hormone-related issues and gastrointestinal symptoms were also identified. Cancer-generic issues such as functional problems, fatigue, pain, and treatment-related adverse effects were also reported. Regarding mental health, fears (about having sex, of recurrence, or of death), altered body-image, and dealing with lacking knowledge regarding sarcoma had an impact on HRQoL. Social health issues were related to the impact on relationships with others, limitations in undertaking activities, loss of independence, changes in work or study capacity, and financial difficulties. Most of the items of the EORTC QLQ-C30 and EORTC QLQ-EN24 questionnaires were rated as relevant. Questions about lack of knowledge about sarcoma, shock of diagnosis, and menopausal symptoms were lacking from existing measures.
CONCLUSIONS
Uterine sarcoma patients experience a variety of concerns covering the physical, mental, and social domains of HRQoL that are in the main EORTC instruments, but not all of them. Combining cancer-generic, location- and sarcoma-specific items is recommended to assess HRQoL in this patient group. Trial registration NCT04071704.
背景
子宫肉瘤是原发性泌尿生殖系统肿瘤的罕见亚型，需要针对性治疗。本研究旨在探讨诊断和治疗对子宫肉瘤患者健康相关生活质量（HRQoL）的影响，以及可用于评估该组患者HRQoL的方法。
方法
从肉瘤参考中心有目的地抽取了13例子宫肉瘤患者和23名医疗保健专业人员，参与了一项探索HRQoL的半结构化访谈。还要求患者评估欧洲癌症研究与治疗组织核心问卷（EORTC QLQ-C30）和欧洲癌症研究与治疗组织泌尿生殖系统癌症问卷（EORTC QLQ-EN24）的相关性。使用主题分析和描述性统计分析数据。
结果
最常报告的身体健康问题与性功能障碍和泌尿系统症状有关。还发现了与激素相关的问题和胃肠道症状。也报告了一些癌症常见问题，如功能问题、疲劳、疼痛和治疗相关的不良反应。关于心理健康，恐惧（关于性行为、复发或死亡）、身体形象改变以及应对对肉瘤缺乏了解的情况对HRQoL有影响。社会健康问题与对与他人关系的影响、开展活动的限制、失去独立性、工作或学习能力的变化以及经济困难有关。EORTC QLQ-C30和EORTC QLQ-EN24问卷中的大多数项目被评为相关。现有测量方法中缺乏关于对肉瘤缺乏了解、诊断的震惊和更年期症状的问题。
结论
子宫肉瘤患者经历了涵盖HRQoL身体、心理和社会领域的各种问题，这些问题主要存在于EORTC的工具中，但并非全部。建议结合癌症通用、部位和肉瘤特异性项目来评估该患者群体的HRQoL。试验注册号NCT04071704。
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