Quality of life after decompressive surgery for severe cerebral venous thrombosis

BACKGROUND: Decompressive surgery can be lifesaving in patients with severe cerebral venous thrombosis (CVT) and impending brain herniation. However, data on health-related quality of life (HRQoL) after surgery are limited. METHODS: DECOMPRESS-2 was a prospective cohort study including adult patients with CVT from 15 centers in 10 countries who underwent decompressive surgery (2011-2019). HRQoL was assessed using EQ5D-3 L utility scores, subdomains, and a visual analogue scale (VAS) at 6 and 12 months post-surgery. Complete case analysis, multiple imputation, best- and worst-case analyses were performed. Predictors of EQ5D-score (Tobit regression) and VAS (linear regression) at 12 months were analyzed. RESULTS: Of 118 patients, 112 were included (median age 38 years [IQR 27-46], 68% female). At 12-months, EQ5D-3 L and VAS were available for 89% and 90% of survivors, respectively. Median EQ5D-3L-score was 0.70 (IQR 0.52-0.85, mean 0.59 [SD 0.38]) and median VAS was 70 (IQR 56-80, mean 69 [SD 18]). Overall, 84% of patients reported problems in ≥1 subdomain of the EQ5D-3L: 68% with usual activities, 59% pain/discomfort, 58% anxiety/depression, 47% with self-care, 43% with mobility. Higher age and residence in a middle-income country (vs. high-income) predicted poorer EQ5D-3 L and VAS. Preoperative coma predicted worse EQ5D-3 L only. CONCLUSIONS: Twelve months after decompressive surgery for CVT, over 4 out of 5 survivors reported problems in at least one subdomain of the EQ5D-3 L. Higher age, middle-income country status and preoperative coma were negative predictors of quality of life.