Public support for healthcare-mediated disclosure of hereditary cancer risk information: Results from a population-based survey in Sweden

Andreas Andersson; Carolina Hawranek; Anna Öfverholm; Hans Ehrencrona; Kalle Grill; Senada Hajdarevic; Beatrice Melin; Emma Tham; Barbro Numan Hellquist; Anna Rosén

doi:10.1186/s13053-020-00151-0

Public support for healthcare-mediated disclosure of hereditary cancer risk information: Results from a population-based survey in Sweden

Hered Cancer Clin Pract. 2020 Sep 15:18:18. doi: 10.1186/s13053-020-00151-0. eCollection 2020.

Authors

Affiliations

¹ Department of Radiation Sciences, Umeå University, Umeå, Sweden.
² Department of Clinical Sciences, University of Gothenburg, Gothenburg, Sweden.
³ Department of Clinical Genetics and Pathology, Laboratory Medicine, Office for Medical Services, Region Skåne, Lund, Sweden.
⁴ Division of Clinical Genetics, Department of Laboratory Medicine, Lund University, Lund, Sweden.
⁵ Department of Historical, Philosophical and Religious Studies, Umeå University, Umeå, Sweden.
⁶ Department of Nursing, Umeå University, Umeå, Sweden.
⁷ Department of Molecular Medicine and Surgery, Karolinska Institute, Solna, Sweden.
⁸ Department of Clinical Genetics, Karolinska University Hospital, Solna, Sweden.

Abstract

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: 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 (χ²) test.

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, p = .755). The desire to be informed was higher among women (91.5%) than men (87.0%, χ2, p = .044). No significant differences were found when comparing different age groups, educational levels, place of residence and having children or not. The preferred source of risk information was a healthcare professional in both moderate and high-risk scenarios (80.1 and 75.5%). However, 18.1 and 20.1% respectively would prefer to be informed by a family member. Assuming that healthcare professionals disclosed the information, the favoured mode of information was letter and phone (38.4 and 33.2%).

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.

Keywords: Cancer prevention; Colorectal cancer; Family disclosure; Healthcare disclosure; Hereditary cancer; Informing relatives; Public opinion; Risk information.