Qiu Jiajia, Guan Jiaqin, Yang Xiaochen, Wu Jiong, Liu Guangyu, Di Genhong, Chen Canming, Hou Yifeng, Han Qixia, Shen Zhenzhou, Shao Zhimin, Hu Zhen
Department of Nursing Administration, Shanghai Cancer Center, Fudan University, Shanghai, China.
Department of Oncology, Shanghai Medical College, Fudan University, Shanghai, China.
PLoS One. 2016 Jul 18;11(7):e0158531. doi: 10.1371/journal.pone.0158531. eCollection 2016.
This study aims to understand the quality of life (QOL) and psychological state (PS) of Chinese breast cancer patients who received BRCA1/2 genetic testing; to examine the psychological changes between BRCA1/2 mutation carriers and non-carriers; and to further explore the psychological experience of BRCA1/2 mutation carriers.
This study was combined with quantitative and qualitative designs. First, we performed a quantitative investigation using FACT-B (Chinese version) and Irritability, Depression and Anxiety scale (IDA) to assess the QOL and PS in breast cancer patients who received BRCA1/2 genetic testing. Then semi-structured in-depth qualitative interviews among 13 mutation carriers were conducted in hospital.
Results from the quantitative study showed QOL scores were relatively high and the IDA scores were relatively low among the patients, and there was no significant difference in the QOL or IDA scores between non-carriers and carriers. Based on the qualitative analysis, four main themes emerged: (1) Finding the reason for having breast cancer; (2) Negative emotions; (3) Behavioral changes; (4) Lack of information.
The present study showed that QOL and PS are good among the breast cancer patients who received genetic testing. Genetic testing itself does not cause long psychosocial effects. BRCA1/2 mutation carriers may have certain negative emotions at the first stage they knew the testing results and may initiate behavioral and lifestyle changes. The patients with a BRCA1/2 mutation desire knowledge with regard to genetic aspects in mainland China. Professional information and advice can be provided to relieve the patients' negative emotions when they were informed of gene defect.
本研究旨在了解接受BRCA1/2基因检测的中国乳腺癌患者的生活质量（QOL）和心理状态（PS）；检查BRCA1/2突变携带者与非携带者之间的心理变化；并进一步探索BRCA1/2突变携带者的心理体验。
本研究采用定量和定性设计相结合的方法。首先，我们使用FACT-B（中文版）和易怒、抑郁和焦虑量表（IDA）进行定量调查，以评估接受BRCA1/2基因检测的乳腺癌患者的生活质量和心理状态。然后，在医院对13名突变携带者进行了半结构化深度定性访谈。
定量研究结果显示，患者的生活质量得分相对较高，IDA得分相对较低，非携带者和携带者之间的生活质量或IDA得分无显著差异。基于定性分析，出现了四个主要主题：（1）寻找患乳腺癌的原因；（2）负面情绪；（3）行为改变；（4）信息缺乏。
本研究表明，接受基因检测的乳腺癌患者的生活质量和心理状态良好。基因检测本身不会造成长期的心理社会影响。BRCA1/2突变携带者在得知检测结果的第一阶段可能会有一定的负面情绪，并可能引发行为和生活方式的改变。BRCA1/2突变患者渴望了解中国大陆有关基因方面的知识。在告知患者基因缺陷时，可以提供专业信息和建议以缓解患者的负面情绪。
