Quality of life after decompressive surgery for severe cerebral venous thrombosis

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.

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.

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.

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.