Abstract
Purpose :
To provide real-world data on the world-wide-web for patient and doctor awareness.
Methods :
From December 2017 to November 2019, consecutive patients with 3 types of eye cancers choroidal melanoma (CM), iridociliary melanoma (ICM) and ocular surface squamous carcinoma (OSSC) had specific outcomes recorded at each return visit. Each result was anonymized, entered in an online portal and sent to a unique software program specifically developed to create real-world-data i.e. simple numbers (count), most common (median) and averages (mean) for our eye cancer specialty center. No patients who had been lost to follow up for more than 12 months were included. Outcome measures were number of patients, mean visual acuity, local tumor control, eye salvage, systemic metastases and length of follow up.
Results :
A HIPAA compliant, internet-based software program was developed and linked to public access web page in order to collect and analyze near-real-time data pertaining to the treatment, vision, life and follow-up time of eye cancer patients. During this period, CM radiation plaque tumor control was 99.7%, median vision 20/25 (mean 20/50) and eye salvage was 95.5%. ICM tumor control was 99.1% and the median vision 20/20 (mean 20/20). OSSC tumor control was 100% and the most common vision was 20/20 (mean 20/20). Rates of primary enucleation as treatment were 4.5% for CM, 2.8% for ICM and 0% for OSSC. All patient results were updated by the ophthalmic oncology fellow at each patient visit so as to reflect near-real-time outcomes at our center.
Conclusions :
This initiative paves way for other specialists to post their clinical results online for patient and physician reference. Posting treatment results on the web offers greater transparency and an opportunity to improve clinical practice by monitoring clinical care results. Online reporting helps both patients and physicians by comparing results, thereby, improving overall health care standards.
This is a 2020 ARVO Annual Meeting abstract.