Patient-reported experiences of gynecologic cancer risk management in Lynch syndrome: A scoping review

Le résumé fourni par la source

Lynch syndrome (LS) is an inherited cancer predisposition syndrome associated with increased lifetime risks of endometrial, ovarian, colorectal, and other cancers. For individuals with LS who are at risk of gynecologic cancers, risk management may include gynecologic surveillance, symptom awareness, referral to specialists, counselling, and consideration of risk-reducing surgery. Although clinical guidelines provide recommendations for gynecologic cancer risk management in LS, recommendations vary across settings and the evidence base for some aspects of surveillance remains limited. These uncertainties may affect patient experiences, healthcare navigation, communication with providers, and decision-making. This patient-centred scoping review will map the extent and nature of peer-reviewed primary literature reporting patient-reported experiences related to gynecologic cancer risk management in LS. The review is informed by patient engagement and preliminary qualitative work that identified five key areas of interest: experiences with gynecologic surveillance; provider knowledge, care navigation, and patient advocacy; understanding of LS diagnosis, counselling, and guideline uncertainty; decision-making and impacts related to risk-reducing gynecologic surgery; and lifestyle or quality-of-life considerations. The review will examine how these patient-informed themes are represented in the published literature, identify areas of convergence and divergence, and highlight literature gaps. The review will follow Joanna Briggs Institute (JBI) guidance for scoping reviews and will be reported in accordance with PRISMA-ScR. Expected outcomes include a descriptive map of study characteristics, thematic areas represented in the literature, and evidence gaps relevant to patient-centred gynecologic cancer risk management in LS. This will allow for better tailoring of educational tools for LS carriers, identify where improvement can be made in care pathways and counselling, and distinguish key areas where further research is needed.

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