Jacobs Chris, Pichert Gabriella, Harris Jackie, Tucker Kathy, Michie Susan
Research Department of Clinical, Education and Health Psychology, University College London, London, UK.
London Bridge Hospital, London, UK.
Psychooncology. 2017 Nov;26(11):1818-1824. doi: 10.1002/pon.4379. Epub 2017 Feb 10.
Genetic testing of cancer predisposing genes will increasingly be needed in oncology clinics to target cancer treatment. This Delphi study aimed to identify areas of agreement and disagreement between genetics and oncology health professionals and service users about the key messages required by women with breast/ovarian cancer who undergo BRCA1/BRCA2 genetic testing and the optimal timing of communicating key messages.
Participants were 16 expert health professionals specialising in oncology/genetics and 16 service users with breast/ovarian cancer and a pathogenic BRCA1/BRCA2 variant. Online questionnaires containing 53 inductively developed information messages were circulated to the groups separately. Participants rated each message as key/not key on a Likert scale and suggested additional messages. Questionnaires were modified according to the feedback and up to 3 rounds were circulated. Consensus was reached when there was ≥75% agreement.
Thirty key messages were agreed by both groups with 7 of the key messages agreed by ≥95% of participants: dominant inheritance, the availability of predictive testing, the importance of pretest discussion, increased risk of breast and ovarian cancer, and the option of risk-reducing mastectomy and bilateral salpingo-oophorectomy. Both groups agreed that key messages should be communicated before genetic testing and once a pathogenic variant has been identified.
There was a high level of agreement within and between the groups about the information requirements of women with breast/ovarian cancer about BRCA1/BRCA2. These key messages will be helpful in developing new approaches to the delivery of information as genetic testing becomes further integrated into mainstream oncology services.
肿瘤学诊所越来越需要对癌症易感基因进行基因检测，以指导癌症治疗。这项德尔菲研究旨在确定遗传学和肿瘤学健康专业人员以及服务使用者之间，在接受BRCA1/BRCA2基因检测的乳腺癌/卵巢癌女性所需的关键信息以及传达关键信息的最佳时机方面的共识和分歧领域。
参与者包括16名专门从事肿瘤学/遗传学的专家健康专业人员以及16名患有乳腺癌/卵巢癌且携带致病性BRCA1/BRCA2变异的服务使用者。包含53条归纳得出的信息的在线问卷分别分发给这些群体。参与者根据李克特量表将每条信息评为关键/非关键，并提出其他信息。问卷根据反馈进行修改，最多进行了三轮分发。当达成≥75%的共识时，即达成一致意见。
两组达成了30条关键信息的共识，其中7条关键信息得到了≥95%的参与者的认可：显性遗传、预测性检测的可用性、检测前讨论的重要性、乳腺癌和卵巢癌风险增加，以及降低风险的乳房切除术和双侧输卵管卵巢切除术的选择。两组都同意应在基因检测前以及一旦确定致病性变异时传达关键信息。
两组内部以及两组之间，对于乳腺癌/卵巢癌女性关于BRCA1/BRCA2的信息需求达成了高度共识。随着基因检测进一步融入主流肿瘤学服务，这些关键信息将有助于开发新的信息传递方法。
