04/13/2022 A study published in eJHaem evaluated the extent of public awareness for Castelman Disease (CD) and TAFRO syndrome using Google Trends data. TAFRO syndrome is a sub-type of idiopathic multicentric Castelman disease (iMCD) that involves thrombocytopenia (T), anasarca (A), fevers (F), reticulin myelofibrosis (R), organomegaly (O), and normal or only slightly elevated immunoglobulin levels. Since the first diagnostic criteria of TAFRO syndrome proposed in 2015, a number of cases have been reported all over the world. In fact, over half of the iMCD patients in the CDCN’s US-based ACCELERATE (www.CDCN.org/ACCELERATE) natural history registry have iMCD-TAFRO. This study suggests that public awareness of CD and TAFRO syndrome increased in the United States and Japan, however the increases awareness is limited in non-US or Japanese countries. The slow upwards tick in awareness is positive progress, though much work is still needed to raise awareness as patients with CD and iMCD TAFRO require urgent attention.
Abstract
Castleman disease (CD) is a rare lymphoproliferative disorder with multiple sub- types. Thrombocytopenia, anasarca, fever, reticulin fibrosis or renal insufficiency, and organomegaly (TAFRO) syndrome can occur in the context of CD. The study evalu- ated worldwide public awareness of CD and TAFRO syndrome using Google Trends data between 2015 and 2021. Our results showed that global public interest steadily grew until late 2019, at a small but significant rate of 1.1% per month from the 1st to 57th month (1/2015–9/2019). The increase coincided with a peak in the United States and Japan, but the search volume decreased at a rate of 1.3% per month after that time. No clear trend changes were noted throughout the study period with the search term “TAFRO.” However, the search volume significantly increased during the time period at a rate of 4.8% (confidence interval [CI]: 2.8, 6.8) and 4.7% (CI: 2.7, 6.8) per month in Japan and worldwide, respectively. There was an insufficient search volume for “TAFRO” in the United States to perform the analysis. Most searches on “TAFRO” stemmed from Japan, suggesting considerable geographical disparity in the aware- ness of TAFRO syndrome. Further efforts are crucial to raise the awareness of CD and TAFRO syndrome among physicians and the general public, primarily in non-USA and Japanese countries.