Hamilton Jada G, Shah Ibrahim H, Salafia Caroline, Schofield Elizabeth, Garzon Margaux Genoff, Cadet Kechna, Stadler Zsofia K, Hay Jennifer L, Offit Kenneth, Robson Mark E
Department of Psychiatry & Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, NY, USA.
Department of Medicine, Memorial Sloan Kettering Cancer Center, New York, NY, USA.
PEC Innov. 2023 Jan 19;2:100124. doi: 10.1016/j.pecinn.2023.100124. eCollection 2023 Dec.
Tumor genomic profiling (TGP) can inform advanced cancer patients' treatment decisions, and also reveal secondary germline findings-information about inherited risks for cancer and other disorders. We sought to develop a measure of patient perceptions of the clinical and personal utility of secondary germline findings.
We developed a draft survey based on literature and patient interview data (=40). We evaluated and refined the survey through cognitive interviews with advanced cancer patients who received secondary germline findings from TGP (=10). The survey was psychometrically validated with data from two independent samples of advanced cancer patients undergoing TGP (total =349).
Cognitive interviews offered opportunities for survey refinement and confirmation of its comprehensible nature. Exploratory and confirmatory factor analysis of the survey identified 16 items across three subscales with strong internal consistency (Cronbach's alpha ≥0.79): perceived utility for others, perceived utility for self and health, and confidence in secondary findings.
We developed a novel valid scale with promise for measuring advanced cancer patients' perceptions of the utility of secondary germline findings.
We offer a new patient-derived measure of perceived utility of and confidence in secondary germline findings with potential applications for precision oncology research and clinical communication.
肿瘤基因组分析（TGP）可为晚期癌症患者的治疗决策提供依据，还能揭示二级种系研究结果——有关癌症及其他疾病遗传风险的信息。我们试图制定一种衡量患者对二级种系研究结果临床及个人效用认知的方法。
我们根据文献和患者访谈数据（n = 40）制定了一份初步调查问卷。我们通过对10名接受TGP二级种系研究结果的晚期癌症患者进行认知访谈，对该调查问卷进行评估和完善。利用来自两个接受TGP的晚期癌症患者独立样本的数据（共349例）对该调查问卷进行了心理测量学验证。
认知访谈为完善调查问卷并确认其易懂性提供了机会。对该调查问卷进行探索性和验证性因素分析，确定了三个分量表中的16个项目，内部一致性较强（克朗巴哈系数≥0.79）：对他人的感知效用、对自身及健康的感知效用以及对二级研究结果的信心。
我们开发了一种新型有效量表，有望用于衡量晚期癌症患者对二级种系研究结果效用的认知。
我们提供了一种新的源自患者的对二级种系研究结果感知效用及信心的测量方法，在精准肿瘤学研究和临床沟通方面具有潜在应用价值。
