消费者对癌症登记驱动家族癌症检测路径的可接受性：一项基于可接受性理论框架的定性研究

数据集获取（Figshare）

• 源站标题：Consumer acceptability of a cancer registry-driven familial cancer testing pathway: a qualitative study using the Theoretical Framework of Acceptability
• DOI：10.6084/m9.figshare.31287705.v1
• 发布日期：2026-02-07
• 文件数：3 个
• 文件总体积：308.86 KB
• 源站页面：https://tandf.figshare.com/articles/dataset/Consumer_acceptability_of_a_cancer_registry-driven_familial_cancer_testing_pathway_a_qualitative_study_using_the_Theoretical_Framework_of_Acceptability/31287705

命令行下载

curl -L -o "ifon_a_2621128_sm2722.docx" "https://ndownloader.figshare.com/files/61718741"
curl -L -o "ifon_a_2621128_sm2720.pdf" "https://ndownloader.figshare.com/files/61718744"
curl -L -o "ifon_a_2621128_sm2719.docx" "https://ndownloader.figshare.com/files/61718747"

文件清单

• ifon_a_2621128_sm2722.docx（17.88 KB）
• ifon_a_2621128_sm2720.pdf（237.62 KB）
• ifon_a_2621128_sm2719.docx（53.37 KB）

文件总体积 308.86 KB（源站 API 实测）。

数据说明

Familial cancer test referral rates for rare tumors are suboptimal and follow a social gradient; while cancer registries are legally mandated to collect comprehensive clinical pathological data which could be used to inform clinical practice. We aimed to investigate consumer acceptability of and preferred approach for a cancer registry-driven familial cancer testing notification pathway.
A qualitative study using semi-structured interviews informed by the Theoretical Framework of Acceptability was conducted.
Nineteen individuals recently disclosed to the Victorian Cancer Registry diagnosed with a cancer meeting local familial cancer testing criteria were interviewed. Participants supported being notified directly by the cancer registry to inform them about familial cancer testing, as they welcomed using existing health data in new ways to optimize health care. Key considerations included the timing, tone, language, information provided in the registry communication, and minimizing the onus on the patient. Assuring data security and verifying the legitimacy of the registry were raised.
Individuals diagnosed with cancer found the service model acceptable. Participants preferred either to action the findings independently, with supporting resources, or permit the cancer registry to directly inform treating clinicians. Ongoing and consumer-informed work is required to develop processes and resources including digital options.
Cancer registries collect information about all new cancer diagnoses. This information could help identify people who might benefit from genetic testing, especially for rare cancers. However, not many people are currently referred for this testing. We wanted to know if people would be comfortable with cancer registries contacting them about genetic testing and how best to do this. We interviewed 19 people to get their thoughts. Most people were comfortable with the registry reaching out because they liked the idea of using health information to improve patient care. They had some important considerations including: making the contact easy to understand; taking care when and how to contact people after their diagnosis; including key informat

许可

CC BY 4.0

引用

学术使用请引用 DOI 10.6084/m9.figshare.31287705.v1（source: https://tandf.figshare.com/articles/dataset/Consumer_acceptability_of_a_cancer_registry-driven_familial_cancer_testing_pathway_a_qualitative_study_using_the_Theoretical_Framework_of_Acceptability/31287705）。