2 Adherence to Clinical Surveillance Guidelines in Von Hippel-Lindau (Vhl) Disease: Evaluating the Impact of a Coordinated Care Centre Implementation in Bc

VHL is a rare hereditary cancer syndrome, predisposing to the development of multiorgan tumour growth including CNS and retinal hemangioblastomas. While guidelines for screening and management of vHL exist, adherence is variable. The development of coordinated clinical care centers with multidisciplinary expertise in rare diseases has been demonstrated to improve outcomes. OBJECTIVES: We reviewed adherence to surveillance guidelines pre and post development of a provincial vHL clinic at BC Cancer. We sought to evaluate whether patient geographic proximity to the clinic, or the modality of initial consultation, impacted time to being seen for consultation, and whether there was a change in management plan after consultation. RESULTS: Between 2022 - 2024, 57 patients from across BC were seen (median age 34, 58% female, and 42% male). We found statistically significant improvement in adherence to almost all surveillance guidelines after consultation. We found no difference in time from referral to consultation based on patient proximity to the clinic, (F(3,53)=1.10, p=0.35) nor the modality (in person vs telehealth) of initial consultation (t(55)=1.07, p=0.29). 87% of patients had changes in their management plans. CONCLUSIONS: Our results add to existing evidence that coordinated care centers with multidisciplinary expertise in vHL can result in improvements in quality of care. Our clinical model successfully utilizes technology to reach patients for equitable access to care. Future work will evaluate potential cost savings to the healthcare system, as well as patient satisfaction with their care pre and post participation in the vHL clinic.