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使用患者报告结局评估遗传咨询中的赋权。

Evaluating empowerment in genetic counseling using patient-reported outcomes.

机构信息

Cancer Genetics Service, Division of Medical Oncology, National Cancer Centre Singapore, Singapore, Singapore.

Biostatistics Unit, Department of Clinical Trials and Epidemiological Sciences, National Cancer Centre Singapore, Singapore, Singapore.

出版信息

Clin Genet. 2020 Feb;97(2):246-256. doi: 10.1111/cge.13646. Epub 2019 Oct 23.

Abstract

Data about patient reported outcomes from cancer genetics services (CGS) are lacking but are essential to guide service evaluation and improvements. We measured improvement in empowerment, following genetic counseling in Singapore using a culturally-adapted version of the Genetic Counseling Outcome Scale (GCOS-24); and sought to identify factors associated with change in empowerment. The GCOS-24 was administered to 155 patients of the CGS, at pre- and post-counseling or testing timepoints. Of which, 110 patients underwent genetic testing. Individual pre- and post-counseling responses were subjected to Rasch analysis; the scale was subsequently split into cognitive control (CC) and emotional control (EC) domains. Associations of baseline characteristics with changes in pre- and post-CC and EC scores were assessed using multiple regression analysis. Both CC and EC scores showed significant improvement following genetic counseling and testing. While all items in the CC domain of being showed increases at follow-up, aspects of EC related to alleviating negative emotions (P = .88) and hopelessness (P = .2) did not show significant improvement. Our study revealed significant improvement in empowerment in patients who have received cancer genetic counseling, while revealing a need to cultivate hope and facilitate the alleviation of negative emotions in patients during genetic counseling.

摘要

有关癌症遗传学服务(CGS)患者报告结果的数据尚缺乏,但对于指导服务评估和改进至关重要。我们使用经过文化调适的遗传咨询结果量表(GCOS-24)来衡量新加坡遗传咨询后的赋权情况,并试图确定与赋权变化相关的因素。在咨询前和咨询后或检测时间点,对 155 名 CGS 患者进行了 GCOS-24 评估;其中 110 名患者接受了基因检测。对个体的咨询前和咨询后的反应进行了 Rasch 分析;随后将量表分为认知控制(CC)和情绪控制(EC)两个领域。使用多元回归分析评估基线特征与 CC 和 EC 评分前后变化的相关性。遗传咨询和检测后,CC 和 EC 评分均显示出显著改善。虽然 CC 领域的所有项目在随访时都有所增加,但与减轻负面情绪(P=0.88)和绝望感(P=0.2)相关的 EC 方面并未显示出显著改善。我们的研究表明,接受癌症遗传咨询的患者的赋权能力显著提高,同时也表明需要在遗传咨询过程中培养希望并帮助减轻患者的负面情绪。

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