Genomic Medicine Institute, Geisinger, Danville, PA, USA.
College of Journalism and Communications, University of Florida, Gainesville, FL, USA.
Transl Behav Med. 2022 Jul 18;12(7):800-809. doi: 10.1093/tbm/ibac018.
Motivating at-risk relatives to undergo cascade testing for familial hypercholesterolemia (FH) is critical for diagnosis and lifesaving treatment. As credible sources of information, clinicians can assist in family communication about FH and motivate cascade testing uptake. However, there are no guidelines regarding how clinicians should effectively communicate with probands (the first person diagnosed in the family) and at-risk relatives. Individuals and families with FH can inform our understanding of the most effective communications to promote cascade testing. Guided by the extended parallel process model (EPPM), we analyzed the perspectives of individuals and families with FH for effective messaging clinicians can use to promote cascade testing uptake. We analyzed narrative data from interviews and surveys collected as part of a larger mixed-methods study. The EPPM was used to identify message features recommended by individuals and families with FH that focus on four key constructs (severity, susceptibility, response efficacy, self-efficacy) to promote cascade testing. Participants included 22 individuals from 11 dyadic interviews and 98 survey respondents. Participants described prioritizing multiple messages that address each EPPM construct to alert relatives about their risk. They illustrated strategies clinicians could use within each EPPM construct to communicate to at-risk relatives about the importance of pursuing diagnosis via cascade testing and subsequent treatment for high cholesterol due to FH. Findings provide guidance on effective messaging to motivate cascade testing uptake for FH and demonstrates how the EPPM may guide communication with at-risk relatives about genetic risk and motivate cascade testing broadly.
激励有风险的亲属进行家族性高胆固醇血症 (FH) 的级联检测对于诊断和救生治疗至关重要。作为可信的信息来源,临床医生可以协助家庭沟通 FH 并激励级联检测的采用。然而,对于临床医生应该如何有效地与先证者(家族中第一个被诊断的人)和有风险的亲属进行沟通,目前还没有相关指南。有 FH 的个人和家庭可以帮助我们了解最有效的沟通方式,以促进级联检测。本研究以扩展平行过程模型 (EPPM) 为指导,分析了 FH 患者和家庭的观点,以了解临床医生可以用来促进级联检测采用的有效信息传递方法。我们分析了访谈和调查中收集的叙事数据,这些数据是作为一项更大的混合方法研究的一部分收集的。EPPM 用于确定 FH 患者和家庭推荐的信息传递特征,这些特征侧重于四个关键结构(严重性、易感性、反应效果、自我效能),以促进级联检测。参与者包括 11 对 22 名访谈者和 98 名调查受访者。参与者描述了优先考虑多种信息传递方法,以提醒亲属注意他们的风险。他们说明了临床医生可以在每个 EPPM 结构中使用的策略,以告知有风险的亲属进行级联检测诊断的重要性,以及由于 FH 导致的高胆固醇的后续治疗。研究结果为 FH 级联检测采用提供了有效的信息传递指导,并展示了 EPPM 如何指导有关遗传风险的与有风险的亲属的沟通,并广泛激发级联检测。