Introduction
Patients diagnosed with thyroid cancer often turn to the internet for information to make informed treatment decisions. While the National Cancer Institute (NCI) is a comprehensive source of information, little is known about the depth of content offered from independent NCI-Designated Cancer Centers (NCI-DCCs). The aim of this study was to evaluate the comprehensiveness of publicly available information about thyroid cancer at NCI-DCCs in the United States.
Methods
We reviewed information about thyroid cancer available on all of NCI-DCCs websites using the search terms “thyroid,” “thyroid nodule,” and “thyroid cancer”. The extracted information was compared to a gold standard—29 pieces of information available on the NCI’s website. These pieces of information were identified and sorted by two team members into categories: background & anatomy, symptoms, types of thyroid cancer, prevalence/risk factors, diagnosis, staging, prognosis, surveillance and treatment options, and clinical trials. Abstraction from the NCI-DCCs was performed in duplicate by study team members.
Results
Of 66 NCI-DCCs, 7 websites contained verbatim copies of the NCI website materials and one website contained no information on thyroid cancer. The majority of NCI-DCC websites defined thyroid cancer (n=51, 77.3%), the anatomy and function of the thyroid (n=53, 80.3%), and the types of thyroid cancer (n=59, 89.4%). Most websites also discussed risk factors for thyroid cancer (n=49, 74.2%) and symptoms (n=55, 83.3%). However, information about treatment options varied: surgery (n=58, 87.9%), radiation therapy (n=60, 90.9%), and chemotherapy (n=50, 75.8%) were frequently discussed. However, thyroid hormone therapy to suppress thyroid stimulating hormone (n=39, 59.1%) and targeted therapies (n=39, 59.1%) were less frequently mentioned. Finally, few webpages discussed surveillance: follow-up tests (n=23, 34.8%) and monitoring for recurrence (n=19, 28.8%).
Conclusion
While many NCI-DCC websites provide foundational information on thyroid cancer, notable gaps exist in the breadth of information compared to the NCI website, particularly around certain treatment options and surveillance. Incomplete information may leave patients with misunderstanding of their disease, leading to treatment choices that do not align with expectations.