Henneman Lidewij, van Asperen Christi J, Oosterwijk Jan C, Menko Fred H, Claassen Liesbeth, Timmermans Daniëlle Rm
Department of Clinical Genetics, Amsterdam UMC, Vrije Universiteit, Amsterdam, the Netherlands.
Department of Clinical Genetics, Leiden University Medical Center, Leiden, the Netherlands.
Patient Prefer Adherence. 2020 Feb 19;14:333-342. doi: 10.2147/PPA.S232941. eCollection 2020.
Counselees' preferences are considered important for the choice of risk communication format and for improving patient-centered care. We here report on counselees' preferences for how risks are presented in familial breast cancer counseling and the impact of this preferred format on their understanding of risk.
As part of a practice-based randomized controlled trial, 326 unaffected women with a family history of breast cancer received their lifetime risk in one of five presentation formats after standard genetic counseling in three Dutch familial cancer clinics: 1) in percentages, 2) in frequencies ("X out of 100"), 3) in frequencies plus graphical format (10×10 human icons), 4) in frequencies and 10-year age-related risk and 5) in frequencies and 10-year age-related risk plus graphical format. Format preferences and risk understanding (accuracy) were assessed at 2-week follow-up by a questionnaire, completed by 279/326 women.
The most preferred risk communication formats were numbers combined with verbal descriptions (37%) and numbers only (26%). Of the numerical formats, most (55%) women preferred percentages. The majority (73%) preferred to be informed about both lifetime and 10-year age-related risk. Women who had received a graphical display were more likely to choose a graphical display as their preferred format. There was no significant effect between the intervention groups with regard to risk accuracy. Overall, women given risk estimates in their preferred format had a slightly better understanding of risk.
The results suggest that the accuracy of breast cancer risk estimation is slightly better for women who had received this information in their preferred format, but the risk format used had no effect on women's risk accuracy. To meet the most frequent preference, counselors should consider providing a time frame of reference (eg, risk in the next 10 years) in a numerical format, in addition to lifetime risk.
咨询对象的偏好对于风险沟通形式的选择以及改善以患者为中心的护理至关重要。我们在此报告咨询对象对于家族性乳腺癌咨询中风险呈现方式的偏好，以及这种偏好形式对其风险理解的影响。
作为一项基于实践的随机对照试验的一部分，326名有乳腺癌家族史的未患病女性在荷兰三家家族性癌症诊所接受标准遗传咨询后，以五种呈现形式之一得知其终生风险：1）以百分比形式；2）以频率形式（“100人中X人”）；3）以频率加图形形式（10×10人体图标）；4）以频率及与年龄相关的10年风险形式；5）以频率及与年龄相关的10年风险加图形形式。在2周随访时通过问卷评估形式偏好和风险理解（准确性），279/326名女性完成了问卷。
最受青睐的风险沟通形式是数字结合文字描述（37%）和仅数字形式（26%）。在数字形式中，大多数（55%）女性偏好百分比形式。大多数（73%）女性希望同时得知终生风险和与年龄相关的10年风险。接受过图形展示的女性更有可能选择图形展示作为其偏好形式。各干预组之间在风险准确性方面无显著差异。总体而言，以偏好形式获得风险估计的女性对风险的理解略好一些。
结果表明，以偏好形式获得此信息的女性对乳腺癌风险估计的准确性略高，但所使用的风险形式对女性的风险准确性没有影响。为满足最常见的偏好，咨询人员除了提供终生风险外，还应考虑以数字形式提供一个参考时间框架（例如，未来10年的风险）。
