Graduate School of Health, University of Technology Sydney, Sydney, Australia.
Psycho-Oncology Co-operative Research Group, The University of Sydney, Sydney, Australia.
Patient Educ Couns. 2023 Sep;114:107800. doi: 10.1016/j.pec.2023.107800. Epub 2023 May 19.
Research on family communication of germline genome sequencing (GS) results (versus of genetic results after targeted genetic testing) is still emerging, yet potentially complex results increase the importance of communicating risk to relatives. Promoting equity by ensuring patients have sufficient health literacy to interpret results is important in this context. This study aimed to identify cancer patients' perceived importance of result disclosure, predictors of perceptions, and perspectives on family communication.
This explanatory-sequential, cross-sectional mixed-methods study involved participants (n = 246) completing a questionnaire and (n = 20) a semi-structured interview. Ordinal logistic regressions determined associations between potential predictors and perceived importance of result disclosure. Interview transcripts were analysed thematically using a constant-comparative approach.
More participants intended disclosing to nuclear (77.4%) than to extended family (42.7%). More than half (59.3%) felt results were family information; 62.7% believed it was important to disclose results to family members. Nuclear and extended family communication scores and education level were significantly positively associated with perceived importance of disclosure (p < 0.05). Six qualitative themes were identified: i) Responsibility to inform, ii) Choice, iii) Autonomy, iv) Family Communication, v) Significance of results, and vi) Health professional role.
Low health literacy and family conflict can complicate communication of GS results. Patients seek clear, interpretable information in a format they can easily communicate.
Healthcare professionals can facilitate discussion of GS results by offering written information, encouraging disclosure, exploring existing family dynamics and communication patterns, and offering strategies to improve family communication. Centralised genetic communication offices and chatbots can also be helpful.
关于种系基因组测序（GS）结果（与靶向基因检测后的遗传结果相比）的家庭沟通研究仍在出现，但潜在的复杂结果增加了向亲属传达风险的重要性。在这种情况下，通过确保患者具有足够的健康素养来解释结果，从而促进公平是很重要的。本研究旨在确定癌症患者对结果披露的感知重要性、感知的预测因素以及对家庭沟通的看法。
本研究采用解释性顺序、横断面混合方法，纳入了 246 名参与者完成了一份问卷，20 名参与者进行了半结构化访谈。有序逻辑回归确定了潜在预测因素与感知结果披露重要性之间的关联。使用恒比比较法对访谈记录进行了主题分析。
更多的参与者打算向核心（77.4%）而不是扩展家庭（42.7%）披露结果。超过一半（59.3%）的人认为结果是家庭信息；62.7%的人认为向家庭成员披露结果很重要。核家庭和扩展家庭沟通评分和教育水平与感知披露重要性呈显著正相关（p<0.05）。确定了六个定性主题：i）告知责任，ii）选择，iii）自主权，iv）家庭沟通，v）结果的意义，和 vi）医疗保健专业人员的角色。
低健康素养和家庭冲突会使 GS 结果的沟通复杂化。患者寻求清晰、可解释的信息，以他们易于沟通的格式呈现。
医疗保健专业人员可以通过提供书面信息、鼓励披露、探索现有的家庭动态和沟通模式以及提供改善家庭沟通的策略来促进 GS 结果的讨论。集中的遗传沟通办公室和聊天机器人也会有所帮助。
