PSYLIVED: the Psychological Impacts of Living With an Inherited Colorectal Cancer Predisposition Syndrome

STUDY SUMMARY

Study Title: Opening Pandora's box: the Psychological Impacts of living with an inherited colorectal cancer predisposition syndrome Internal ref. no. (or short title): PSYLIVED Study Design: Qualitative Study Participants: Adults over 18 with an inherited predisposition or likelihood of inheriting colorectal cancer, offered genetic testing (with and without cancer history) Planned Size of Sample: 30-66 Follow up duration: After the initial interview, participants will not undergo any follow-up assessments. The screening questionnaire will determine the allocated study time-point for analysis. It's important to note that this study is not longitudinal.

Planned Study Period: 2024-2026 Research Question: What are the lived experiences and psychological adaptation processes of individuals diagnosed with inherited colorectal cancer over time?

PSYLIVED is a qualitative study exploring the psychological experience and long-term adaptation process of people living with inherited colorectal cancer. This project will recruit between 30 to 66 participants which will be allocated at one of the 3 time-points of the long-term adaptation process following the Family Systems Genetic Illness Model as articulated by Miller et al. in 2006 (1). The 3 time-points are:

• Time-point 1: crisis I- pre-testing phase (before receiving genetic results)
• Time-point 2: crisis II- post-testing phase (generally up 1 year post genetic testing. However, the team will follow a triage/evaluation system)
• Time-point 3: long term adaptation phase (generally 1 year post genetic testing and beyond. However, the research team will use a triage/evaluation system) This approach will allow for a rich examination of how participants navigate the psychological impact of their genetic diagnosis across varying temporal contexts.

Each of the resulting six distinct datasets, as outlined in Table 1, will undergo individual analyses dedicated to uncovering the psychological adaptation processes at specific time-points. This methodological structure ensures a holistic exploration of the psychological trajectory experienced by individuals living with inherited colorectal cancer.

Furthermore, each analysis at distinct time-points will be refined by distinguishing between cancer and non-cancer patients. Subsequently, a synthesis of findings will be conducted through the comparison and combination of individual datasets. By generating a series of analytical sets, the study aims to provide a comprehensive understanding of the psychological journey undertaken by individuals living with inherited colorectal cancer.

Inclusion criteria

• Adults aged 18 years or older, residing in the UK.
• Diagnosed with inherited colorectal cancer or likely to have inherited colorectal cancer and have been offered genetic testing for this reason.
• Possess the capacity to provide informed consent.
• Able to communicate in English.

Exclusion criteria

• Under 18 years old.
• Unable to communicate in English.
• Experience significant learning or communication difficulties.
• Reside outside of the UK.