Petersen Helle Vendel, Frederiksen Birgitte Lidegaard, Lautrup Charlotte Kvist, Lindberg Lars Joachim, Ladelund Steen, Nilbert Mef
The Danish HNPCC Register, Clinical Research Center, Copenhagen University Hospital, Hvidovre, Kettegård allé 32, 2650, Hvidovre, Denmark.
Department of Clinical Genetics, Aalborg University Hospital, Aalborg, Denmark.
Fam Cancer. 2019 Jan;18(1):43-51. doi: 10.1007/s10689-018-0083-5.
Dissemination of information on a genetically increased risk should according to guidelines primarily be family-mediated. Incomplete and incorrect information spread has, however, been documented and implies missed possibilities for prevention. In Denmark, the national HNPCC register has been granted an exception to send unsolicited letters with information on hereditary colorectal cancer and an invitation to genetic counseling to members of families with familial and hereditary colorectal cancer. To evaluate this approach, we investigated reactions and attitudes to unsolicited letters in 708 members of families with genetic predisposition and in 1600 individuals from the general population. Support for information letters was expressed by 78% of the family members and by 82% of the general population. Regarding route of information, 90% of family members preferred a letter to no information, 66% preferred information from the hospital rather than from family members and 40% preferred to obtain information from a close family member. Our results suggest that use of unsolicited information letters from the health care system may be a feasible and highly acceptable strategy to disseminate information to families at high risk of colorectal cancer.
根据指导方针，关于基因风险增加的信息传播应以家庭为主导。然而，已有文献记载信息传播存在不完整和不正确的情况，这意味着错失了预防的机会。在丹麦，国家遗传性非息肉病性结直肠癌登记处获得了一项豁免，可以向患有家族性和遗传性结直肠癌的家庭成员主动发送有关遗传性结直肠癌的信息信件，并邀请他们接受遗传咨询。为了评估这种方法，我们调查了708名有遗传易感性的家庭成员和1600名普通人群对主动信件的反应和态度。78%的家庭成员和82%的普通人群对信息信件表示支持。关于信息传播途径，90%的家庭成员更喜欢收到信件而不是没有信息，66%的人更喜欢从医院而不是家庭成员那里获得信息，40%的人更喜欢从近亲家庭成员那里获得信息。我们的结果表明，使用医疗保健系统主动发送的信息信件可能是向结直肠癌高危家庭传播信息的一种可行且高度可接受的策略。
