Risk communication in genetic counseling: Exploring uptake and perception of recurrence numbers, and their impact on patient outcomes.
Risk communication in genetic counseling: Exploring uptake and perception of recurrence numbers, and their impact on patient outcomes.
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遗传咨询中的风险沟通：探索复发次数的吸收和感知及其对患者结果的影响。
DOI：
10.1111/cge.13379
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发表时间：
2018
影响因子：
3.5
通讯作者：
Austin,J
中科院分区：
文献类型：
--
作者：
Borle,K;Morris,E;Inglis,A;Austin,J
提供复发次数通常被认为是遗传咨询的基本组成部分。我们试图填补关于患者主动寻求复发次数的频率以及它们如何影响患者治疗结果的知识空白。我们在一家诊所进行了回顾性图表审查，患者在预约前（T1）/后（T2）定期完成遗传咨询结果量表（GCOS，测量赋权）。使用协方差分析，我们评估了以下方面对 T2 GCOS 评分的影响：(1) 接收复发数和 (2) 患者对复发数的感知。复发数是 134/300 名患者 (45%) 的主要指征。在就病因和降低风险策略进行咨询后，116 名患者 (39%) 选择接收复发数字，其中大多数 (n= 64, 55%) 认为该数字低于预期。以下人群的 T2 GCOS 评分没有差异：(1) 收到复发数据的人和没有收到复发数据的人，或 (2) 认为复发数低于预期的人和有其他看法的人。然而，未收到复发数据的一部分患者的 GCOS 评分增加幅度更大。我们的数据对遗传咨询中应常规提供复发数的假设提出了质疑，并表明在自然实践中，最佳患者结果并不取决于收到的复发数。
Providing recurrence numbers is often considered a fundamental component of genetic counseling. We sought to fill knowledge gaps regarding how often patients actively seek recurrence numbers, and how they impact patient outcomes. We conducted a retrospective chart review at a clinic where patients routinely complete the Genetic Counseling Outcomes Scale (GCOS, measuring empowerment) pre (T1)/post (T2) appointment. Using analysis of covariance,we evaluated the effect on T2 GCOS score of: (1) receiving recurrence numbers and (2) patient perception of recurrence numbers. Recurrence numbers were a primary indication for 134/300 patients (45%). After counseling about etiology and risk‐reducing strategies, 116 patients (39%) opted to receive recurrence numbers, with most (n= 64, 55%) perceiving the number to be lower than expected. There was no difference in T2 GCOS scores between those who: (1) received recurrence numbers vs those who did not, or (2) perceived the number to be lower than expected vs those with other perceptions. However, a subset of patients who did not receive recurrence numbers had larger increases in GCOS scores. Our data provide impetus to question the assumption that recurrence numbers should be routinely provided in genetic counseling, and show that in naturalistic practice, optimal patient outcomes are not contingent on receipt of recurrence numbers.