Background and Aims: Cerebral venous thrombosis (CVT) typically affects younger persons of working age. Survivors are considered to have a good prognosis but there are few studies of long-term functional outcomes. We performed a retrospective cross-sectional study of long-term functional outcomes in a hospital based CVT population.
Methods: Patients were identified from hospital coding within 10 years before start of study and contacted by written/telephone. Consenting patients were invited to complete online questionnaires (headache impact test, Short Form Neuro-QOL, multi-dimensional scale of perceived social support). Neuro-QOL T-scores were calculated; positive if >1 SD from normative mean. The study was approved by a national ethics committee.
Results: Of 49 individuals with CVT diagnosed prior to study commencement, 14 were excluded (6 death, 6 secondary to cranial surgery/trauma, 2 emigrated) and 10 (3 male, 6 female, 1 non-binary) completed surveys. Seven patients had six-month mRS 0-1 (2 unavailable). At participation, median age 51 years (28, 73); time from diagnosis 44 months (5, 112). Eight were employed. Four reported ongoing headaches. Nine reported medium/high perceived social support. Five reported no difficulties in any domain of Neuro-QOL. The most frequently (4/10) reported limitation was in social roles and the least (0/10) was stigma.
Conclusion: Although most participants had mRS 0-1 six months after diagnosis and had returned to work by survey completion, 40% still reported headache and over 50% requirements for social support and challenges on neuro-QOL up to 4 years after diagnosis. Better understanding of patient reported outcome measures is needed after CVT.