Experiences and expectations of hereditary colorectal cancer patients during the post-genetic test period

Individuals with inherited colorectal cancer (CRC) risk often work with genetic counselors (GCs) who traditionally meet with them prior to genetic testing and then disclose genetic test (GT) results. After results disclosure, many GCs do not typically provide long-term follow-up, and as a result, there is little in the literature regarding how GCs can meet the needs of patients in the post-test period. This mixed methods study aimed to explore the experiences of patients with hereditary CRC syndromes in the post-test period with a focus on identifying areas for improvement following a positive GT result. Participants completed an online survey (N = 17) and optional semi-structured interview (N = 10) focused on patient experiences with GCs, resources received following a positive GT result, degree of perceived support from their GC, and psychosocial considerations associated with GT. The survey data was analyzed using Microsoft Excel to generate descriptive statistics, and the interviews were analyzed using reflexive thematic analysis. Survey results indicated that participants would like an increase in contact with their GC in the post-test period and prefer follow-up visits to be scheduled in advance. Interview results revealed several themes including: meaning making, emotional reaction, impact of GC, recommendations for GC, and perceived health literacy. The data demonstrates a need to reconsider the effectiveness and structure of clinical follow-up after a positive GT disclosure. In the post-test period, GCs should attempt to meet needs specific to the patient in addition to providing follow-up tailored to a patient's emotional state, information needs, and life circumstances. Further needs assessment with greater focus on diverse groups and a larger cohort may be necessary.