Patient-reported outcomes after surgical treatment of spontaneous intracranial hypotension: a cross-sectional study
- 1Center for Public Health, Department of Social and Preventive Medicine, Medical University of Vienna, Kinderspitalgasse 15, Vienna, 1090 Austria
- 2Department of Neurosurgery, Lindenhofspital, Bern, Switzerland
- 3Institute for Diagnostic and Interventional Neuroradiology, Hannover Medical School, Hannover, Germany
Abstract
Background: Spontaneous intracranial hypotension (SIH) can cause substantial functional and psychosocial impairment, but patient-reported outcomes after surgical treatment remain incompletely understood. This study aimed to describe postoperative symptom burden, functional outcomes, psychosocial impact, and headache-related disability in surgically treated patients with self-reported SIH recruited through international patient support networks.
Methods: A cross-sectional online survey (February–April 2025) recruited 92 surgically treated SIH patients via international patient support networks. Variables were obtained by participant report and included comorbidities, surgical characteristics, time metrics, symptom course, psychosocial factors, and HIT-6 scores. Multivariable linear regression was performed to examine factors associated with HIT-6.
Results: Median age was 42 years (IQR 38–46), and 88.0% were female. Median time from diagnosis to most recent surgery was 21 months (IQR 13–41), and time since most recent surgery was 20 months (IQR 12–36). Structural abnormalities (e.g., pseudomeningoceles, neo-membranes) were reported by 33.7% of participants. Ventral dural leaks predominated (59.8%), followed by lateral leaks (15.2%) and CSF-venous fistulae (13.0%). Complete symptom resolution was reported by 15.2% of participants. Mean HIT-6 was 56.75 (SD 12.50). In exploratory adjusted analyses, no significant associations were observed between HIT-6 scores and pre-existing headache, number of surgeries, or CSF leak type.
Conclusion: In this international cross-sectional sample of surgically treated patients with self-reported SIH, a substantial proportion reported persistent symptoms, self-reported rebound intracranial hypertension, headache-related disability, and psychosocial burden. These results suggest a heterogeneous postoperative status and emphasise the importance of structured long-term follow-up.
Related
- Age-related differences in clinical manifestations, neuroimaging features, and treatment of spontaneous intracranial hypotension: a retrospective cohort study.
- Spontaneous Intracranial Hypotension with Bilateral Subdural Haematomas and Posterior Cerebral Artery Infarcts with Delayed Epidural Blood Patch Response: A Case Report
- Spontaneous Intracranial Hypotension Presenting With Acute Orthostatic Headache: A Case Report
- Rates of Retreatment after Transvenous Embolization of CSF-Venous Fistulas in Spontaneous Intracranial Hypotension
- Evaluation of the C1-C2 False Localizing Sign in Spontaneous Intracranial Hypotension: Prevalence and Clinical Insights
BibTeX
@article{kapan2026patientreported,
title = {{Patient-reported outcomes after surgical treatment of spontaneous intracranial hypotension: a cross-sectional study}},
author = {Ali Kapan and Carolina Iten and Christian T. Ulrich and Frank Donnerstag},
journal = {Acta Neurologica Belgica},
year = {2026},
month = sep,
doi = {10.1007/s13760-026-03198-3},
url = {https://doi.org/10.1007/s13760-026-03198-3},
note = {CC BY 4.0},
}
RIS
TY - JOUR
TI - Patient-reported outcomes after surgical treatment of spontaneous intracranial hypotension: a cross-sectional study
AU - Ali Kapan
AU - Carolina Iten
AU - Christian T. Ulrich
AU - Frank Donnerstag
PY - 2026
DA - 2026/09/18
JO - Acta Neurologica Belgica
DO - 10.1007/s13760-026-03198-3
UR - https://doi.org/10.1007/s13760-026-03198-3
AB - Background: Spontaneous intracranial hypotension (SIH) can cause substantial functional and psychosocial impairment, but patient-reported outcomes after surgical treatment remain incompletely understood. This study aimed to describe postoperative symptom burden, functional outcomes, psychosocial impact, and headache-related disability in surgically treated patients with self-reported SIH recruited through international patient support networks. Methods: A cross-sectional online survey (February–April 2025) recruited 92 surgically treated SIH patients via international patient support networks. Variables were obtained by participant report and included comorbidities, surgical characteristics, time metrics, symptom course, psychosocial factors, and HIT-6 scores. Multivariable linear regression was performed to examine factors associated with HIT-6. Results: Median age was 42 years (IQR 38–46), and 88.0% were female. Median time from diagnosis to most recent surgery was 21 months (IQR 13–41), and time since most recent surgery was 20 months (IQR 12–36). Structural abnormalities (e.g., pseudomeningoceles, neo-membranes) were reported by 33.7% of participants. Ventral dural leaks predominated (59.8%), followed by lateral leaks (15.2%) and CSF-venous fistulae (13.0%). Complete symptom resolution was reported by 15.2% of participants. Mean HIT-6 was 56.75 (SD 12.50). In exploratory adjusted analyses, no significant associations were observed between HIT-6 scores and pre-existing headache, number of surgeries, or CSF leak type. Conclusion: In this international cross-sectional sample of surgically treated patients with self-reported SIH, a substantial proportion reported persistent symptoms, self-reported rebound intracranial hypertension, headache-related disability, and psychosocial burden. These results suggest a heterogeneous postoperative status and emphasise the importance of structured long-term follow-up.
SN - 0300-9009
SN - 2240-2993
ER -