Consumer acceptability of a cancer registry-driven familial cancer testing pathway: a qualitative study using the Theoretical Framework of Acceptability

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 information and helpful links; keeping it simple and not too much work for the patient; ensuring data is kept safe; and the registry is trustworthy. People thought this approach could help more patients and their families get genetic testing when needed. However, they felt it was important to do it in a way that respects patients’ feelings and privacy. We need to do more research with patients and clinicians to identify the best way for cancer registries to contact people about genetic testing. This could help improve care for people with rare cancers and their families.

罕见肿瘤的家族性癌症检测转诊率未达理想水平，且呈现社会梯度差异；尽管癌症登记处（Cancer Registry）受法律强制要求收集全面的临床病理数据，此类数据可用于指导临床实践。本研究旨在探究癌症登记处主导的家族性癌症检测告知路径的患者接受度及患者偏好的实施方式。
本研究采用基于可接受性理论框架（Theoretical Framework of Acceptability）的半结构化访谈法开展质性研究。
本研究对19名近期向维多利亚癌症登记处（Victorian Cancer Registry）报备、且所患癌症符合当地家族性癌症检测标准的患者进行了访谈。受访患者支持由癌症登记处直接告知其家族性癌症检测相关信息，因其认可通过新方式利用现有健康数据以优化医疗服务的理念。受访者重点关注的要素包括：告知时机、沟通语气、语言表述、登记处通信中所包含的信息，以及尽可能减轻患者的负担。此外，受访者还提出需确保数据安全性，并验证癌症登记处的合法性。
癌症患者群体认为该服务模式具备可接受性。受访患者偏好两种方案：一是借助配套支持资源自主处理检测相关事宜，二是授权癌症登记处直接告知其接诊医师。后续需开展以患者为导向的持续工作，以开发包括数字化方案在内的相关流程与配套资源。
癌症登记处可收集所有新增癌症诊断病例的相关信息，此类信息有助于识别可能从基因检测（Genetic Testing）中获益的人群，尤其是罕见肿瘤患者。但目前主动转诊接受此类检测的患者数量不多。本研究旨在了解患者是否愿意接受癌症登记处就基因检测事宜进行联络，以及最适宜的联络方式。研究共访谈了19名患者以收集其观点。多数患者对登记处的联络方式表示认可，因其认同利用健康信息改善患者护理的理念。受访者提出了多项重要考量：确保沟通内容通俗易懂、注意确诊后联络的时机与方式、提供关键信息与实用链接、简化流程以减轻患者负担、保障数据安全，以及确认癌症登记处的可信度。受访者认为该路径可帮助更多有需要的患者及其家属获得基因检测服务，但强调需以尊重患者意愿与隐私的方式开展此项工作。后续需联合患者与临床医师开展更多研究，以确定癌症登记处联络患者开展基因检测的最佳方案，这将有助于改善罕见肿瘤患者及其家属的医疗服务质量。