Beyond T Staging in the "Treat All" Era: Severity and Heterogeneity of Kaposi's Sarcoma in East Africa.

BACKGROUND Although many patients with Kaposi's sarcoma (KS) in sub-Saharan Africa are diagnosed with ACTG T1 disease, T1 staging insufficiently captures clinical heterogeneity of advanced KS. Using a representative community-based sample, we detail disease severity at diagnosis to inform KS staging and treatment in sub-Saharan Africa. METHODS We performed rapid case ascertainment on people living with HIV ≥18 years newly diagnosed with KS from 2016-2019 at three clinic sites in Kenya and Uganda to ascertain disease stage as close as possible to diagnosis. We reported KS severity using ACTG and WHO staging criteria, as well as detailed measurements not captured in current staging systems. RESULTS We performed rapid case ascertainment within 1 month for 241 adults newly diagnosed with KS out of 389 adult patients with suspected KS. Patients were 68% male, median age 35 years and median CD4 count 239. The majority had advanced disease, with 82% qualifying as ACTG T1 and 64% as WHO Severe/Symptomatic KS. The most common ACTG T1 qualifiers were edema (79%), tumor associated ulceration (24%), extensive oral KS (9%), pulmonary KS (7%), and gastrointestinal KS (4%). There was marked heterogeneity within T1 KS, with 25% of patients having two T1 qualifying symptoms and 3% having three or more. CONCLUSION The majority of patients newly diagnosed with KS had advanced stage disease, even in the current ART "Treat All" era. We observed great clinical heterogeneity among advanced stage patients, leading to questions about whether all patients with advanced KS require the same treatment strategy.