Improving the Engagement of Underserved Communities With the Prostate Cancer Genetics Service: Identifying Barriers & Facilitators and Developing Supportive Resources Using a Co-production and Collaborative Approach
试验速览
- 阶段
- 不适用
- 状态
- 尚未招募
- 入组人数
- 100
- 主要终点
- Evaluation of educational materials, demonstrating that users have an increase in understanding or prostate cancer risk and symptoms as well as genetic risk.
研究概览
简要总结
Earlier work explored barriers and facilitators to accessing prostate cancer screening, particularly in underserved communities, and provided valuable insights to build upon.
This study will explore perspectives on how genetic risk for prostate cancer is explained and understood through in-depth interviews with members of underserved communities. Findings from this work, alongside earlier results, will be used to co-design clear and accessible digital educational resources in collaboration with community members and relevant charities.
Participation in cancer screening programmes in the UK varies, with differences linked to socioeconomic status, ethnicity and health literacy. Similar inequalities are seen in access to prostate cancer genetics services, indicating a need for improved engagement.
Successful integration of genetics into prostate cancer care requires clear and inclusive information about genetic testing processes, possible outcomes and interpretation of results. Currently, there are limited resources explaining genetic risk for prostate cancer in an accessible way.
Co-production with representatives from underserved communities will ensure that educational materials are understandable, relevant and acceptable to all.
详细描述
There is variability in uptake of cancer screening programmes in the UK with participation affected by socioeconomic status, ethnicity & health literacy. This lack of representation is also seen within the prostate cancer genetics service, suggesting that further work is required to promote engagement. The successful mainstream integration of genetics into prostate cancer management will require people to understand the process, potential outcomes and interpretation of results. In addition, the information provided should be inclusive.
The barriers and facilitators to accessing prostate cancer screening work commenced under a service evaluation (CCR SE1284). This project provided valuable data from underserved communities which we wish to build on. This study aims to further explore perspectives on genetic risk explanation and education in further depth using semi-structured interviews and to use these and earlier findings to co-design educational digital materials to raise awareness about prostate cancer and genetic risk measurement, in keeping with the wishes from the communities that have worked with us.
Development of educational multi-media materials:
Utilising the Medical Research Council's Complex Intervention Design Framework, we will co-design educational materials, using the data collected from community champions and relevant charities.
Evaluation of educational multi-media materials:
研究设计
- 研究类型
- Observational
- 观察模型
- Other
- 时间视角
- Prospective
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- Male
- 接受健康志愿者
- 是
入选标准
- •Men and people with prostates age 18 and above
- •Those who belong to the three underserved groups; Black African and Black Caribbean Ancestry, transgender and non-binary people with a prostate and those with reduced access to healthcare
- •We allow intersectionality within reason and will narratively describe any instances of these in the writeup of findings
- •Those who are able to freely consent to inclusion
- •Individuals with and without a lived experience of prostate cancer
排除标准
- •To avoid exhaustion, we will only allow participation in two interview or focus groups per individual for the entirety of the study
- •Those without capacity to consent to interview (capacity is assumed unless there is good reason to believe otherwise)
研究组 & 干预措施
Semi-structured interview participants
Up to 60 participants for semi-structured interviews, 20 from each of the following underserved groups in prostate cancer screening; Black African and Black Caribbean, transgender and non-binary with a prostate, reduced access to healthcare.
干预措施: Surveys (Other)
Semi-structured interview participants
Up to 60 participants for semi-structured interviews, 20 from each of the following underserved groups in prostate cancer screening; Black African and Black Caribbean, transgender and non-binary with a prostate, reduced access to healthcare.
干预措施: Semi-structured interviews and focus groups (Other)
结局指标
主要结局
Evaluation of educational materials, demonstrating that users have an increase in understanding or prostate cancer risk and symptoms as well as genetic risk.
时间窗: February 2026 to August 2026
Using surveys (before and after use of resources) and interviews to measure improvement in understanding in individuals without experience of prostate cancer.
Increased representation from underserved groups in the referrals to our genetic research studies.
时间窗: As soon as the educational materials are live, which we aim to be from June 2026, increase in referrals to our genetic research studies from under-represented groups will be measured. This will take place for 12 months.
Using demographic data from referrals via our website to our genetic research studies
Qualitative data such as hits to the webpage and scroll depth and how many have signed up to the genetic research studies via the website.
时间窗: These data will be collected from as soon as the webpage goes live for the subsequent 12 months.
This is a short term measure of how effective and engaging the resources are.
次要结局
- Improved representation of underrepresented groups in our genetic risk studies.(Measurements of the demographics of our research participants takes place currently. Any signficant change in representation will be reported for a minimum 12 months after the webpage and resources go live.)
- Reduced barriers to prostate cancer screening and participation in genetic research faced by underrepresented communities(The web page will go live in July 2026 and will be a long term resource (many years), regularly updated by our team. There will also be rounds of evaluation, using surveys and interviews, with subsequent adaption.)