The Real-World use of McGill interactive pediatric OncoGenetic guidelines (MIPOGG): A Cross-Sectional survey

Cancer predisposition syndrome (CPS) recognition is complex, time-sensitive, and requires integration of cancer features with personal and family history in an evolving genetic landscape. The McGill Interactive Pediatric OncoGenetic Guidelines (MIPOGG) is a validated CPS screening web/app-based tool with expanding global reach and users from 98 countries. Given MIPOGG's unrestricted availability, we aimed to characterize self-reported use across clinical, education, and research contexts.

We conducted a cross-sectional, web-based mixed-methods survey of MIPOGG newsletter subscribers (n = 1,749). The questionnaire captured demographics, self-reported MIPOGG use patterns across clinical, education, and research domains, as well as levels of trust and adherence with MIPOGG's content. Descriptive quantitative analyses were complemented with qualitative data from open-ended questions.

Ninety responses were obtained from MIPOGG users (physicians n = 63, genetic counsellors n = 20, others n = 7) across 23 countries. MIPOGG was predominantly used for clinical purposes (89.4%), regardless of role or field of practice. Respondents used MIPOGG to guide decisions for genetic referrals (82.2%) and testing (84.9%). Among clinical users, 52.1% followed MIPOGG's recommendations most of the time, and 23.3% adhered when it matched their clinical judgment. MIPOGG was used for educational and research purposes in 72.9% and 28.2% of respondents, respectively. Guidance for prioritization/triage, differential diagnoses, and use as a "safety net" were common themes raised in the qualitative data.

MIPOGG is predominantly used in clinical practice where it guides genetic referral and testing decisions for users within and outside genetic-based practices. Reported adherence to MIPOGG underscores the importance of accountability, transparent oversight, and efforts to optimize its performance.