MON-528 - Adrenal Cancer Information Gaps: How Do Cancer Centers Stack Up Against the NCI?

Introduction
Adrenocortical carcinoma (ACC) is a rare malignancy. Due to the lack of experts, patients often rely on web-based resources for education and to make informed decisions. However, little is known about the content of online resources. This study primarily aimed to evaluate the online information about ACC at NCI-designated cancer centers (NCI-DCC) and secondarily to assess language availability for patients.

Methods
We systematically reviewed each NCI-DCC’s website using the search terms “adrenal,” “adrenal cancer,” and “adrenocortical carcinoma.” The content on ACC on the NCI Physician Data Query (PDQ) was used as the benchmark and determined by two reviewers to convey 25 key pieces of information about ACC. Two reviewers then assessed each NCI-DCC’s website for coverage of these key pieces of information. Discrepancies were resolved by consensus. Additionally, all websites were assessed for accessibility in languages other than English.

Results
Among 66 independent NCI-DCC websites, 11 (16.7%) did not contain any information about ACC, and 8 (12.5%) were direct reproductions of the NCI material. Among the remaining 47 unique websites, the extent and depth of information about ACC varied substantially when compared to the NCI benchmark.
Most websites defined adrenal gland location and function (85.1%), imaging and lab tests needed for diagnosis (78.7%), treatment options for ACC (76.6%), and symptoms of ACC (68.1%). Only two-thirds of the websites defined ACC (61.7%). Even fewer websites identified risk factors for ACC (44.7%), factors affecting prognosis & treatment options (36.2%), the difference between function and non-functioning tumors (31.9%), the role of biopsy in diagnosis (27.7%), and stages of ACC (21.3%). Only a handful of websites discussed targeted therapies (14.9%), recurrence after treatment (14.9%), differences in treatment based on stage (10.6%), and treatment options for recurrent disease (6.4%).
Among the 47 unique NCI-DCC websites, only 12 offered information in a non-English language (25.5%). Three of these websites offered Spanish as the only other language. The remaining 9 websites offered multilingual options.

Conclusion
Many NCI-DCC websites fall short of matching the depth and completeness of the NCI’s information on ACC. In the current digital healthcare landscape, many patients accessing independent NCI-DCC websites may not receive comprehensive information to make informed decisions about their cancer. Additionally, few websites provided information in languages other than English, potentially exacerbating disparities for patients with limited English proficiency.

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