Improving Engagement From Underserved Communities With Prostate Cancer Genetics Services

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

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.

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:

The co-designed education materials will undergo evaluation in a pilot phase and then again after dissemination. Methods of evaluation will be adopted to include acceptability, usability and integration into clinical practice.

There are few current resources explaining the genetic risk of prostate cancer and opportunities to participate in genetic risk studies. The study will work alongside representatives from underserved communities to ensure that educational materials developed are accessible and acceptable to all.

Inclusion Criteria:

1. Men and people with prostates age 18 and above
2. 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
3. We allow intersectionality within reason and will narratively describe any instances of these in the writeup of findings
4. Those who are able to freely consent to inclusion
5. Individuals with and without a lived experience of prostate cancer

Exclusion Criteria:

1. To avoid exhaustion, we will only allow participation in two interview or focus groups per individual for the entirety of the study
2. Those without capacity to consent to interview (capacity is assumed unless there is good reason to believe otherwise)