SAT-858 - Optimizing Guideline-Based Screening for Adults in Southwestern Ontario with Multiple Endocrine Neoplasia Type 1 (MEN1) Syndrome: A Quality Improvement Initiative

Multiple endocrine neoplasia type 1 (MEN1) is a rare autosomal dominant tumour syndrome classically characterized by a predisposition to developing parathyroid tumours, duodenopancreatic neuroendocrine tumours (dp-NETs), and pituitary adenomas.[1] Patients with MEN1 have a significantly reduced life expectancy, particularly when tumour screening and surveillance is suboptimal.[1] The recently updated 2025 MEN1 guidelines are comprehensive, yet complex and encompass numerous components, thus, incorporation into clinical practice can be challenging.

Through a quality improvement (QI) framework, our aim is to improve adherence to guideline-based screening in adult patients with MEN-1 in Southwestern Ontario by at least 20% by year 2030.

We performed a retrospective 5-year chart review of all adult patients with MEN1 in Southwestern Ontario followed at London Health Sciences Centre (n = 26) to obtain baseline adherence to guideline-based screening recommendations. Adherence of guideline-based screening was calculated as a percentage of the proportion of completed investigations relative to those due per the 2025 MEN1 guidelines. For parathyroid hyperplasia, serum calcium was assessed at diagnosis in 57% and annually in 78%. For dp-NETs, serum fasting gastrin was assessed at diagnosis in 62% and annually in 38%; MR pancreas (or equivalent imaging) was assessed at diagnosis in 69% and follow up imaging in 100%. For sellar masses, prolactin and IGF-1 were assessed at diagnosis in 71% and 59%, respectively, and annually in 67% and 31%, respectively; MR sella (or equivalent imaging) was assessed at diagnosis in 47% and follow up imaging in 85%. Screening adherence for thymic/bronchopulmonary, adrenal, and breast tumours, showed similar variable adherence. The mean number of clinical visits over the most recent 5-years was 9.7.

To improve adherence to guideline-based screening, we are implementing various strategies. These include: a) sending patient-specific recommendations for each patient missing screening tests to their endocrinologist; b) circulating the 2025 MEN1 guidelines within the division and giving them a presentation on these guidelines; c) placing a summary printout of the guidelines in clinical areas for endocrinologist that care for patients with MEN1 syndrome.

In summary, despite frequent follow up, adherence to MEN1 guideline-recommended screening is variable. Targeted QI interventions may improve guideline-concordance, and, in turn, improve outcomes for patients with MEN1 in Southwestern Ontario. If successful, the insights and strategies implemented here, could be considered at other centres that care for patients with MEN1. Future work will assess the impact of these interventions on guideline-adherence and patient outcomes.

References:
(1) Brandi, M.L. et al. MEN1: recommendations and guidelines for best practice. Lancet. 2025;13:699–721.

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