Wolfson Institute of Population Health, Barts CRUK Cancer Centre, Queen Mary University of London, London, UK.
Department of Gynaecological Oncology, University College London Hospital, London, UK.
BJOG. 2024 May;131(6):848-857. doi: 10.1111/1471-0528.17675. Epub 2023 Sep 26.
To evaluate patient preference for short (gist) or detailed/extensive decision aids (DA) for genetic testing at ovarian cancer (OC) diagnosis.
Cohort study set within recruitment to the Systematic Genetic Testing for Personalised Ovarian Cancer Therapy (SIGNPOST) study (ISRCTN: 16988857).
North-East London Cancer Network (NELCN) population.
POPULATION/SAMPLE: Women with high-grade non-mucinous epithelial OC.
A more detailed DA was developed using patient and stakeholder input following the principles/methodology of IPDAS (International Patients Decision Aids Standards). Unselected patients attending oncology clinics evaluated both a pre-existing short and a new long DA version and then underwent mainstreaming genetic testing by a cancer clinician. Appropriate inferential descriptive and regression analyses were undertaken.
Satisfaction, readability, understanding, emotional well-being and preference for long/short DA.
The mean age of patients was 66 years (interquartile range 11), and 85% were White British ethnicity. Of the participants, 74% found DAs helpful/useful in decision-making. Women reported higher levels of satisfaction (86% versus 58%, p < 0.001), right amount of information provided (76.79% versus49.12%, p < 0.001) and improved understanding (p < 0.001) with the long DA compared with the short DA. There was no statistically significant difference in emotional outcomes (feeling worried/concerned/reassured/upset) between 'short' and 'long' DA; 74% of patients preferred the long DA and 24% the short DA. Patients undergoing treatment (correlation coefficient (coef) = 0.603; 95% CI 0.165-1.041, p = 0.007), those with recurrence (coef = 0.493; 95% CI 0.065-0.92, p = 0.024) and older women (coef = 0.042; 95% CI 0.017-0.066, p = 0.001) preferred the short DA. Ethnicity did not affect outcomes or overall preference for long/short DA.
A longer DA in OC patients has higher satisfaction without increasing emotional distress. Older women and those undergoing treatment/recurrence prefer less extensive information, whereas those in remission preferred a longer DA.
评估卵巢癌（OC）诊断时患者对简短（概要）或详细/广泛决策辅助工具（DA）的偏好。
在系统性遗传检测以个性化卵巢癌治疗（SIGNPOST）研究（ISRCTN：16988857）的招募中进行的队列研究。
东北伦敦癌症网络（NELCN）人群。
人群/样本：患有高级非黏液性上皮 OC 的女性。
使用患者和利益相关者的输入，根据 IPDAS（国际患者决策辅助工具标准）的原则/方法开发了更详细的 DA。参加肿瘤学诊所的未选择患者评估了现有的简短和新的长 DA 版本，然后由癌症临床医生进行主流遗传检测。进行了适当的推理描述性和回归分析。
对长/短 DA 的满意度、可读性、理解、情绪健康和偏好。
患者的平均年龄为 66 岁（四分位距 11），85%为白种英国人种。在参与者中，74%的人认为 DA 在决策中很有帮助/有用。与短 DA 相比，女性报告了更高的满意度（86%对 58%，p<0.001）、提供的信息量（76.79%对 49.12%，p<0.001）和更好的理解（p<0.001）。在情绪结果（感到担忧/关注/放心/不安）方面，“短”和“长”DA 之间没有统计学上的显著差异；74%的患者更喜欢长 DA，24%的患者更喜欢短 DA。正在接受治疗的患者（相关系数（coef）=0.603；95%置信区间 0.165-1.041，p=0.007）、有复发的患者（coef=0.493；95%置信区间 0.065-0.92，p=0.024）和年龄较大的女性（coef=0.042；95%置信区间 0.017-0.066，p=0.001）更喜欢短 DA。种族不影响 DA 的长度或总体偏好。
OC 患者的较长 DA 具有更高的满意度，而不会增加情绪困扰。年龄较大的女性和正在接受治疗/复发的患者更喜欢信息量较少的信息，而处于缓解期的患者则更喜欢较长的 DA。
