{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,11,6]],"date-time":"2026-11-06T19:51:12Z","timestamp":1793994672623,"version":"4.8.0"},"reference-count":39,"publisher":"SAGE Publications","issue":"4","license":[{"start":{"date-parts":[[2026,4,1]],"date-time":"2026-04-01T00:00:00Z","timestamp":1775001600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"},{"start":{"date-parts":[[2026,4,1]],"date-time":"2026-04-01T00:00:00Z","timestamp":1775001600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Cephalalgia"],"published-print":{"date-parts":[[2026,4]]},"abstract":"<jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Spontaneous 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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We 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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>A total of 321 patients with confirmed spinal CSF leaks before targeted treatment were included (60.4% female; median age 47 years [IQR 37\u201356.). Most patients had a ventral leak (192\/321, 60%), followed by CSF\u2013venous fistulas (67\/321, 21%) and lateral leaks (62\/321, 19%). The mean EQ-Index was 0.568 (95% CI 0.533\u20130.603), the median EQ-VAS was 45.5 (IQR 30\u201365). The median HIT-6 score was 65 (IQR 59\u201368). 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\u20130.47).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>This 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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/03331024261444662","type":"journal-article","created":{"date-parts":[[2026,4,27]],"date-time":"2026-04-27T09:45:51Z","timestamp":1777283151000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":2,"title":["Toward quantifying disability in spontaneous intracranial hypotension: A patient-derived disability weight"],"prefix":"10.1177","volume":"46","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-7274-519X","authenticated-orcid":false,"given":"Florian","family":"Volz","sequence":"first","affiliation":[{"name":"Medical Center University of Freiburg"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3736-0734","authenticated-orcid":false,"given":"Mazin","family":"Omer","sequence":"additional","affiliation":[{"name":"Medical Center University of Freiburg"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Manou","family":"Overstijns","sequence":"additional","affiliation":[{"name":"Medical Center University of Freiburg"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amir El","family":"Rahal","sequence":"additional","affiliation":[{"name":"Medical Center University of Freiburg"},{"name":"Faculty of Medicine, University of Geneva"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marc","family":"Hohenhaus","sequence":"additional","affiliation":[{"name":"Medical Center University of Freiburg"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jan-Helge","family":"Klingler","sequence":"additional","affiliation":[{"name":"Medical Center University of Freiburg"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Niklas","family":"L\u00fctzen","sequence":"additional","affiliation":[{"name":"Medical Center University of Freiburg"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Horst","family":"Urbach","sequence":"additional","affiliation":[{"name":"Medical Center University of Freiburg"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Charlotte","family":"Zander","sequence":"additional","affiliation":[{"name":"Medical Center University of Freiburg"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ian","family":"Carroll","sequence":"additional","affiliation":[{"name":"Stanford School of Medicine"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7687-6098","authenticated-orcid":false,"given":"J\u00fcrgen","family":"Beck","sequence":"additional","affiliation":[{"name":"Medical Center University of Freiburg"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katharina","family":"Wolf","sequence":"additional","affiliation":[{"name":"Medical Center University of Freiburg"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2026,4,27]]},"reference":[{"key":"e_1_3_4_2_2","doi-asserted-by":"publisher","DOI":"10.1177\/03331024211048510"},{"key":"e_1_3_4_3_2","doi-asserted-by":"publisher","DOI":"10.1001\/jamaneurol.2020.4799"},{"key":"e_1_3_4_4_2","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMra2101561"},{"key":"e_1_3_4_5_2","doi-asserted-by":"publisher","DOI":"10.1177\/15910199231165429"},{"key":"e_1_3_4_6_2","unstructured":"United Nations Department of Economic and Social Affairs Population Division. 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