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


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Article Info

DATE

2020-09-15

AUTHORS

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

ABSTRACT

BackgroundTargeted 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.MethodsA 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.ResultsOf 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%).ConclusionsIn 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. More... »

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18

References to SciGraph publications

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    22 schema:datePublishedReg 2020-09-15
    23 schema:description BackgroundTargeted 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.MethodsA 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.ResultsOf 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%).ConclusionsIn 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.
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    29 schema:keywords CRC
    30 ConclusionsIn
    31 Pearson's chi-square test
    32 Sweden
    33 Swedish citizens
    34 Swedish population
    35 age groups
    36 benefits
    37 cancer
    38 cancer risk
    39 cancer risk information
    40 chi-square test
    41 children
    42 citizens
    43 colonoscopy
    44 communication pathways
    45 data
    46 desire
    47 differences
    48 different age groups
    49 disclosure
    50 educational level
    51 effective prevention strategies
    52 family
    53 family members
    54 full potential
    55 general public
    56 general public opinion
    57 group
    58 healthcare professionals
    59 hereditary CRC
    60 hereditary cancer
    61 hereditary cancer risk information
    62 hereditary risk
    63 high-risk scenarios
    64 individuals
    65 information
    66 insights
    67 interest
    68 letter
    69 levels
    70 lifetime risk
    71 majority
    72 majority of respondents
    73 measures
    74 members
    75 men
    76 mode
    77 mode of information
    78 need
    79 opinion
    80 participants
    81 pathway
    82 phones
    83 place
    84 place of residence
    85 population
    86 population-based survey
    87 potential
    88 potential benefits
    89 preferences
    90 preferred source
    91 prevention
    92 prevention strategies
    93 preventive measures
    94 professionals
    95 program
    96 public
    97 public opinion
    98 public support
    99 random sample
    100 rationale
    101 relatives
    102 residence
    103 respondents
    104 results
    105 risk
    106 risk individuals
    107 risk information
    108 risk relatives
    109 samples
    110 scenarios
    111 significant differences
    112 source
    113 strategies
    114 study
    115 support
    116 surveillance
    117 survey
    118 targeted prevention
    119 test
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