Chopra Ishveen, Kelly Kimberly M
a Department of Pharmaceutical Systems and Policy, School of Pharmacy, Robert C. Byrd Health Sciences Center , West Viginia University , Morgantown , West Virginia , USA.
b Mary Babb Randolph Cancer Center , West Virginia University , Morgantown , West Virginia , USA.
J Health Commun. 2017 Feb;22(2):143-152. doi: 10.1080/10810730.2016.1258743. Epub 2017 Jan 23.
Genetic counseling and testing for familial cancer is a unique context for the communication of risk information in the family. This study utilized a theoretical framework based on the family systems perspective to understand intrafamilial cancer risk communication patterns in the Ashkenazi Jewish population. Individuals (n = 120) at an elevated risk for BRCA1/2 mutations were included. Change in communication patterns over time was assessed using McNemar tests. Associations with communication patterns were assessed with multivariable logistic regression. Overall, the proportion of participants encouraged by others significantly (p < .001) increased from before to after genetic counseling. A higher proportion of participants were encouraged by female family members compared with male family members. Participants who were older, had no personal history of cancer, and had a higher cancer risk perception were more likely to be encouraged by others for genetic testing. Participant's intent to encourage family members for genetic testing from before counseling to after receipt of genetic test results decreased by 16.7%. Participants who had no personal history of cancer and had informative test results for a BRCA1/2 mutation were more likely to encourage other family members for genetic testing. In addition, qualitative findings suggested that closeness among family members, concern for family, especially future generations, and cognizance about cancer risk facilitate information sharing and encouragement for genetic testing. Our findings indicate that intrafamilial cancer risk communication varies with the structure of family relationships and that genetic counseling can play an important role in improving intrafamilial cancer risk communication.
家族性癌症的遗传咨询和检测是在家庭中传达风险信息的独特背景。本研究利用基于家庭系统视角的理论框架来理解阿什肯纳兹犹太人群体中的家族内癌症风险沟通模式。纳入了BRCA1/2突变风险升高的个体（n = 120）。使用McNemar检验评估随时间变化的沟通模式。通过多变量逻辑回归评估与沟通模式的关联。总体而言,在遗传咨询前后,受到他人鼓励的参与者比例显著增加（p <.001）。与男性家庭成员相比,受到女性家庭成员鼓励的参与者比例更高。年龄较大、无个人癌症病史且癌症风险认知较高的参与者更有可能受到他人鼓励进行基因检测。从咨询前到收到基因检测结果后,参与者鼓励家庭成员进行基因检测的意愿下降了16.7%。无个人癌症病史且BRCA1/2突变检测结果有信息量的参与者更有可能鼓励其他家庭成员进行基因检测。此外,定性研究结果表明,家庭成员之间的亲密程度、对家庭尤其是对后代的关心以及对癌症风险的认识有助于信息共享和对基因检测的鼓励。我们的研究结果表明,家族内癌症风险沟通因家庭关系结构而异,并且遗传咨询可以在改善家族内癌症风险沟通方面发挥重要作用。
