Dataset Information

Public support for healthcare-mediated disclosure of hereditary cancer risk information: Results from a population-based survey in 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 (?2) 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 (?2, p?=?.755). The desire to be informed was higher among women (91.5%) than men (87.0%, ?2, 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.

SUBMITTER: Andersson A

PROVIDER: S-EPMC7493346 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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

Andersson Andreas A Hawranek Carolina C Öfverholm Anna A Ehrencrona Hans H Grill Kalle K Hajdarevic Senada S Melin Beatrice B Tham Emma E Hellquist Barbro Numan BN Rosén Anna A

Hereditary cancer in clinical practice 20200915

<h4>Background</h4>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 ...[more]

PMID: 32944097

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Project description:We described public views toward harm reduction among Canadian adults and tested a social exposure model predicting support for these contentious services, drawing on theories in the morality policy, intergroup relations, addiction, and media communication literatures. A quota sample of 4645 adults (18+ years), randomly drawn from an online research panel and stratified to match age and sex distributions of adults within and across Canadian provinces, was recruited in June 2018. Participants completed survey items assessing support for harm reduction for people who use drugs (PWUD) and for seven harm reduction interventions. Additional items assessed exposure to media coverage on harm reduction, and scales assessing stigma toward PWUD (α = .72), personal familiarity with PWUD (α = .84), and disease model beliefs about addiction (α = .79). Most (64%) Canadians supported harm reduction (provincial estimates = 60% - 73%). Five of seven interventions received majority support, including: outreach (79%), naloxone (72%), drug checking (70%), needle distribution (60%) and supervised drug consumption (55%). Low-threshold opioid agonist treatment and safe inhalation interventions received less support (49% and 44%). Our social exposure model, adjusted for respondent sex, household income, political views, and education, exhibited good fit and accounted for 17% of variance in public support for harm reduction. Personal familiarity with PWUD and disease model beliefs about addiction were directly associated with support (βs = .07 and -0.10, respectively), and indirectly influenced public support via stigmatized attitudes toward PWUD (βs = 0.01 and -0.01, respectively). Strategies to increase support for harm reduction could problematize certain disease model beliefs (e.g., "There are only two possibilities for an alcoholic or drug addict-permanent abstinence or death") and creating opportunities to reduce social distance between PWUD, the public, and policy makers.

Project description:This is the first national study of public and patient research priorities in osteoporosis and fracture. We have identified new research areas of importance to members of the public, particularly 'access to information from health professionals'. The findings are being incorporated into the research strategy of the National Osteoporosis Society.PurposeThis study aimed to prioritise, with patients and public members, research topics for the osteoporosis research agenda.MethodsAn e-survey to identify topics for research was co-designed with patient representatives. A link to the e-survey was disseminated to supporters of the UK National Osteoporosis Society (NOS) in a monthly e-newsletter. Responders were asked to indicate their top priority for research across four topics (understanding and preventing osteoporosis, living with osteoporosis, treating osteoporosis and treating fractures) and their top three items within each topic. Descriptive statistics were used to describe demographics and item ranking. A latent class analysis was applied to identify a substantive number of clusters with different combinations of binary responses.ResultsOne thousand one hundred eighty-eight (7.4%) respondents completed the e-survey. The top three items overall were 'Having easy access to advice and information from health professionals' (63.8%), 'Understanding further the safety and benefit of osteoporosis drug treatments' (49.9%) and 'Identifying the condition early by screening' (49.2%). Latent class analysis revealed distinct clusters of responses within each topic including primary care management and self-management. Those without a history of prior fracture or aged under 70 were more likely to rate items within the cluster of self-management as important (21.0 vs 12.9 and 19.8 vs 13.3%, respectively).ConclusionThis is the first study of public research priorities in osteoporosis and has identified new research areas of importance to members of the public including access to information. The findings are being incorporated into the research strategy of the National Osteoporosis Society.

Dataset Information

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

Publications

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

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