Public support for healthcare-mediated disclosure of hereditary cancer risk information: Results from a population-based survey in Sweden.
Cancer prevention
Colorectal cancer
Family disclosure
Healthcare disclosure
Hereditary cancer
Informing relatives
Public opinion
Risk information
Journal
Hereditary cancer in clinical practice
ISSN: 1731-2302
Titre abrégé: Hered Cancer Clin Pract
Pays: Poland
ID NLM: 101231179
Informations de publication
Date de publication:
2020
2020
Historique:
received:
09
10
2019
accepted:
07
09
2020
entrez:
18
9
2020
pubmed:
19
9
2020
medline:
19
9
2020
Statut:
epublish
Résumé
Targeted surveillance of at-risk individuals in families with increased risk of hereditary cancer is an effective prevention strategy if relatives are identified, informed and enrolled in screening programs. Despite the potential benefits, many eligible at-risk relatives remain uninformed of their cancer risk. This study describes the general public's opinion on disclosure of hereditary colorectal cancer (CRC) risk information, as well as preferences on the source and the mode of information. A random sample of the general public was assessed through a Swedish citizen web-panel. Respondents were presented with scenarios of being an at-risk relative in a family that had an estimated increased hereditary risk of CRC; either 10% (moderate) or 70% (high) lifetime risk. A colonoscopy was presented as a preventive measure. Results were analysed to identify significant differences between groups using the Pearson's chi-square (χ Of 1800 invited participants, 977 completed the survey (54%). In the moderate and high-risk scenarios, 89.2 and 90.6% respectively, would like to receive information about a potential hereditary risk of CRC (χ2, In this study a majority of respondents wanted to be informed about a potential hereditary risk of CRC and preferred healthcare professionals to communicate this information. The two presented levels of CRC lifetime risk did not significantly affect the interest in being informed. Our data offer insights into the needs and preferences of the Swedish population, providing a rationale for developing complementary healthcare-assisted communication pathways to realise the full potential of targeted prevention of hereditary CRC.
Sections du résumé
BACKGROUND
BACKGROUND
Targeted surveillance of at-risk individuals in families with increased risk of hereditary cancer is an effective prevention strategy if relatives are identified, informed and enrolled in screening programs. Despite the potential benefits, many eligible at-risk relatives remain uninformed of their cancer risk. This study describes the general public's opinion on disclosure of hereditary colorectal cancer (CRC) risk information, as well as preferences on the source and the mode of information.
METHODS
METHODS
A random sample of the general public was assessed through a Swedish citizen web-panel. Respondents were presented with scenarios of being an at-risk relative in a family that had an estimated increased hereditary risk of CRC; either 10% (moderate) or 70% (high) lifetime risk. A colonoscopy was presented as a preventive measure. Results were analysed to identify significant differences between groups using the Pearson's chi-square (χ
RESULTS
RESULTS
Of 1800 invited participants, 977 completed the survey (54%). In the moderate and high-risk scenarios, 89.2 and 90.6% respectively, would like to receive information about a potential hereditary risk of CRC (χ2,
CONCLUSIONS
CONCLUSIONS
In this study a majority of respondents wanted to be informed about a potential hereditary risk of CRC and preferred healthcare professionals to communicate this information. The two presented levels of CRC lifetime risk did not significantly affect the interest in being informed. Our data offer insights into the needs and preferences of the Swedish population, providing a rationale for developing complementary healthcare-assisted communication pathways to realise the full potential of targeted prevention of hereditary CRC.
Identifiants
pubmed: 32944097
doi: 10.1186/s13053-020-00151-0
pii: 151
pmc: PMC7493346
doi:
Types de publication
Journal Article
Langues
eng
Pagination
18Informations de copyright
© The Author(s) 2020.
Déclaration de conflit d'intérêts
Competing interestsThe author(s) declare that they have no competing interest.
Références
Fam Cancer. 2016 Apr;15(2):155-62
pubmed: 26748927
Clin Gastroenterol Hepatol. 2013 Sep;11(9):1093-100
pubmed: 23669308
Colorectal Dis. 2009 Feb;11(2):126-30
pubmed: 19143775
Ann Intern Med. 2011 Jul 19;155(2):69-79
pubmed: 21768580
J Genet Couns. 2019 Oct;28(5):1042-1058
pubmed: 31216099
Hered Cancer Clin Pract. 2018 May 10;16:11
pubmed: 29760830
Med J Aust. 2015 Apr 6;202(6):335-7
pubmed: 25832164
Fam Cancer. 2016 Oct;15(4):697-706
pubmed: 26897130
Colorectal Dis. 2020 May;22(5):529-536
pubmed: 31860758
J Environ Manage. 2009 Jan;90(1):284-92
pubmed: 18082316
J Genet Couns. 2019 Dec 30;:
pubmed: 31889383
Hum Genet. 2016 Jan;135(1):109-20
pubmed: 26612611
Fam Cancer. 2019 Jan;18(1):127-135
pubmed: 29846880
Health Syst Transit. 2012;14(5):1-159
pubmed: 22894859
Colorectal Dis. 2013 Apr;15(4):e175-85; discussion p.e185
pubmed: 23451840
Genet Med. 2018 Oct;20(10):1131-1144
pubmed: 29300371
Int J Behav Med. 2015 Aug;22(4):551-60
pubmed: 25515913
Eur J Hum Genet. 2007 Oct;15(10):999-1011
pubmed: 17609674
Am J Med. 2000 Dec 15;109(9):705-11
pubmed: 11137485
Am J Med Genet A. 2007 Jan 15;143A(2):142-8
pubmed: 17167797
Hered Cancer Clin Pract. 2019 Jun 26;17:16
pubmed: 31391872
Eur J Hum Genet. 2007 Jun;15(6):612-8
pubmed: 17392704
Med Decis Making. 2015 Jan 14;35(6):734-744
pubmed: 25589525
Am J Epidemiol. 2007 Dec 1;166(11):1345-54
pubmed: 17728269
Addiction. 2006 Sep;101(9):1352-61
pubmed: 16911736
Fam Cancer. 2019 Jan;18(1):43-51
pubmed: 29651783
Eur J Hum Genet. 2015 Feb;23(2):147-51
pubmed: 24848747
J Clin Oncol. 2008 Dec 10;26(35):5783-8
pubmed: 18809606
Eur J Hum Genet. 2018 Jun;26(6):786-795
pubmed: 29487415
Genet Med. 2016 Apr;18(4):290-301
pubmed: 26110233
Cancer Prev Control. 1998 Aug;2(4):167-72
pubmed: 10093629
J Med Genet. 2006 Aug;43(8):665-70
pubmed: 16371501
Genet Test. 2008 Mar;12(1):81-91
pubmed: 18373407
J Community Genet. 2019 Oct;10(4):489-499
pubmed: 30919323
Breast Cancer Res Treat. 2013 Aug;141(1):135-44
pubmed: 23974829
Fam Cancer. 2010 Dec;9(4):669-79
pubmed: 20577820
Public Health Genomics. 2010;13(7-8):396-405
pubmed: 20606381