Abstract
Purpose :
Von Hippel-Lindau syndrome (VHL) affects many organ systems, requiring treatment by multiple specialists. It is often difficult to ascertain which other specialists are ordering screening studies, and whether the patient’s screening is guideline-concordant. We instituted a quality improvement initiative to improve guideline-concordant screening by referring all VHL patients presenting to our ophthalmology clinic to the Vanderbilt Comprehensive Clinical Care Center (CCCC), regardless of whether they were being followed by other specialists, to determine if this improves guideline-concordant screening.
Methods :
Retrospective case series of patients presenting to Vanderbilt Eye Institute, both before and after the institution of the CCCC in 2017. Beginning in 2017, all patients were referred to the CCCC medical or pediatric oncologist for evaluation and surveillance. Patients referred to ophthalmology from the CCCC oncologists were excluded. Rates of CCCC referral from ophthalmology to oncology were measured. Guideline-concordant screening status was determined for patients prior to seeing ophthalmology, as well as afterwards, in both the pre-2017 and post-2017 cohorts. Tumors identified on initial screening were recorded.
Results :
100% of VHL patients presenting to ophthalmology were referred to CCCC oncologists. Almost all patients were already followed by other specialists. Prior to creating the CCCC in 2017, 0% of patients were guideline-concordant at the time they presented to ophthalmology, and 29% were concordant afterwards. After creating the CCCC, 20% of patients were guideline-concordant at presentation, and 100% were concordant after seeing the CCCC oncologist. 50% of patients referred from ophthalmology to CCCC oncology had tumors requiring intervention at the time of initial screening imaging.
Conclusions :
Rates of guideline-concordant screening have historically been poor, even for patients being followed for VHL-related tumors by subspecialists. Universal reflex referral of VHL patients to a CCCC dramatically improved guideline-concordant screening rates. Half of all patients had a (non-ocular) tumor requiring treatment at the time they present to ophthalmology, underscoring the importance of expeditious referral.
This abstract was presented at the 2019 ARVO Annual Meeting, held in Vancouver, Canada, April 28 - May 2, 2019.