Toward quantifying disability in spontaneous intracranial hypotension: A patient-derived disability weight

IntroductionSpontaneous intracranial hypotension (SIH) due to a spinal CSF leak is associated with substantial health loss. However, SIH is not represented as a distinct condition in the Global Burden of Disease framework, and no disease specific disability weight has been reported. A disability weight is the fundamental basis for comparative analyses of disease burden. The objective of this study was to estimate a patient-derived disability weight for SIH based on pre-treatment health-related quality of life data and to contextualize this estimate relative to published values for other conditions.MethodsWe conducted a retrospective observational study of consecutive patients with confirmed spinal CSF leaks treated at a tertiary referral center between October 2020 and October 2025. Pre-treatment quality of life and headache burden were assessed using the EQ-5D-5L and HIT-6 questionnaires. After calculating the EQ-Index using the German value set, the mean disability weight and its 95% confidence interval were derived using a linear transformation. For contextual interpretation, the newly estimated disability weight was compared descriptively with published values for deliberately selected neurological, headache- or pain-related, and chronic conditions.ResultsA total of 321 patients with confirmed spinal CSF leaks before targeted treatment were included (60.4% female; median age 47 years [IQR 37-56.). Most patients had a ventral leak (192/321, 60%), followed by CSF-venous fistulas (67/321, 21%) and lateral leaks (62/321, 19%). The mean EQ-Index was 0.568 (95% CI 0.533-0.603), the median EQ-VAS was 45.5 (IQR 30-65). The median HIT-6 score was 65 (IQR 59-68). All scores showed no significant differences between the three leak types. Based on EQ-5D-5L data, the resulting mean disability weight for SIH was 0.432 (95% CI 0.40-0.47).ConclusionThis study provides a first patient-derived disability weight estimate of 0.432 for ongoing SIH. This indicates a substantial non-fatal health loss that is comparable to or exceeding that of other chronic conditions. This estimate enables contextual comparison with other conditions and provides a foundation for future burden-of-disease assessments of this curable condition.