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Unsolicited information letters to increase awareness of Lynch syndrome and familial colorectal cancer: reactions and attitudes

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@article{674f4a61934b48479a7775dc592f14d9,
title = "Unsolicited information letters to increase awareness of Lynch syndrome and familial colorectal cancer: reactions and attitudes",
abstract = "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.",
keywords = "Journal Article, Attitudes towards unsolicited risk information, Dissemination of genetic information, Direct approach, Hereditary colorectal cancer, Reactions to risk information, Postal Service, Genetic Testing, Humans, Middle Aged, Male, Colorectal Neoplasms, Hereditary Nonpolyposis/diagnosis, Feasibility Studies, Information Dissemination/methods, Registries/standards, Genetic Counseling/organization & administration, Adult, Female, Patient Education as Topic, Genetic Predisposition to Disease, Attitude to Health, Early Detection of Cancer, Risk Factors, Denmark/epidemiology, Pilot Projects, Family, Aged, Practice Guidelines as Topic",
author = "Petersen, {Helle Vendel} and Frederiksen, {Birgitte Lidegaard} and Lautrup, {Charlotte Kvist} and Lindberg, {Lars Joachim} and Steen Ladelund and Mef Nilbert",
year = "2019",
month = jan,
doi = "10.1007/s10689-018-0083-5",
language = "English",
volume = "18",
pages = "43--51",
journal = "Familial Cancer",
issn = "1389-9600",
publisher = "Springer Netherlands",
number = "1",

}

RIS

TY - JOUR

T1 - Unsolicited information letters to increase awareness of Lynch syndrome and familial colorectal cancer

T2 - reactions and attitudes

AU - Petersen, Helle Vendel

AU - Frederiksen, Birgitte Lidegaard

AU - Lautrup, Charlotte Kvist

AU - Lindberg, Lars Joachim

AU - Ladelund, Steen

AU - Nilbert, Mef

PY - 2019/1

Y1 - 2019/1

N2 - 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.

AB - 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.

KW - Journal Article

KW - Attitudes towards unsolicited risk information

KW - Dissemination of genetic information

KW - Direct approach

KW - Hereditary colorectal cancer

KW - Reactions to risk information

KW - Postal Service

KW - Genetic Testing

KW - Humans

KW - Middle Aged

KW - Male

KW - Colorectal Neoplasms, Hereditary Nonpolyposis/diagnosis

KW - Feasibility Studies

KW - Information Dissemination/methods

KW - Registries/standards

KW - Genetic Counseling/organization & administration

KW - Adult

KW - Female

KW - Patient Education as Topic

KW - Genetic Predisposition to Disease

KW - Attitude to Health

KW - Early Detection of Cancer

KW - Risk Factors

KW - Denmark/epidemiology

KW - Pilot Projects

KW - Family

KW - Aged

KW - Practice Guidelines as Topic

UR - http://www.scopus.com/inward/record.url?scp=85045273180&partnerID=8YFLogxK

U2 - 10.1007/s10689-018-0083-5

DO - 10.1007/s10689-018-0083-5

M3 - Journal article

C2 - 29651783

VL - 18

SP - 43

EP - 51

JO - Familial Cancer

JF - Familial Cancer

SN - 1389-9600

IS - 1

ER -

ID: 53715270