{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,2]],"date-time":"2026-10-02T21:34:36Z","timestamp":1790976876877,"version":"4.1.0"},"reference-count":25,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2025,11,13]],"date-time":"2025-11-13T00:00:00Z","timestamp":1762992000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2025,11,13]],"date-time":"2025-11-13T00:00:00Z","timestamp":1762992000000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/501100001826","name":"ZonMw","doi-asserted-by":"publisher","award":["10140022010004"],"award-info":[{"award-number":["10140022010004"]}],"id":[{"id":"10.13039\/501100001826","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["headachejournal.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Headache"],"published-print":{"date-parts":[[2026,1]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>Cluster headache (CH) significantly impacts patients' quality of life (QoL). We aim to validate the Cluster Headache Quality of Life scale (CHQ) for measuring QoL changes in patients with CH.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>In this multicenter, prospective, longitudinal psychometric validation study, participants, all with chronic CH (CCH), completed the CHQ at a 3\u2010monthly interval alongside headache diaries and general QoL questionnaires (36\u2010item Short Form [SF\u201036], Hospital Anxiety and Depression Scale [HADS], and EuroQol 5 Dimensions [EQ\u20105D]). CHQ's ability to measure changes was validated in three steps following COSMIN guidelines: (1) convergent validity, (2) responsiveness, and (3) interpretability. Baseline scores were used for step 1; change scores for steps 2 and 3 (\u0394 baseline\u2014follow\u2010up). Twelve correlation hypotheses were formulated and tested for steps 1 and 2. Validity was rated by % rejected hypotheses (high: \u226425%, moderate: 26%\u201350%, poor: \u226550%). Data were collected in the Netherlands (Leiden, Nijmegen, Heerlen) between 9 December 2021 and 18 November 2024.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      For step 1, 117 participants were included (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200970 for SF\u201036\/HADS analyses,\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200942 for EQ\u20105D analyses) and 82 were included for steps 2 and 3 (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200948 for SF\u201036\/HADS analyses,\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200929 for EQ\u20105D analyses). At baseline, overall QoL was poor (CHQ: 60.9\u2009\u00b1\u200923.1, SF\u201036: 46.7\u2009\u00b1\u200919.9) and worse in participants with more intense and frequent CH attacks (&gt;CHQ scores:\n                      <jats:italic>\u03b2<\/jats:italic>\n                      \u2009=\u20092.92 (95% confidence interval [CI] 0.91 to 4.93),\n                      <jats:italic>p<\/jats:italic>\n                      \u2009=\u20090.005;\n                      <jats:italic>\u03b2<\/jats:italic>\n                      \u2009=\u20090.27 (95% CI 0.02 to 0.53),\n                      <jats:italic>p<\/jats:italic>\n                      \u2009=\u20090.033). Convergent and responsiveness validity was high (\u226425% hypotheses rejected). CHQ baseline scores correlated strongly with the HADS, SF\u201036, and EQ\u20105D (\n                      <jats:italic>\u03c1<\/jats:italic>\n                      \u2009=\u20090.68,\n                      <jats:italic>\u03c1<\/jats:italic>\n                      \u2009=\u2009\u22120.60,\n                      <jats:italic>\u03c1<\/jats:italic>\n                      \u2009=\u2009\u22120.52), but weakly with attack frequency (\n                      <jats:italic>\u03c1<\/jats:italic>\n                      \u2009=\u20090.27). Change scores correlated strongly with HADS and SF\u201036 (\n                      <jats:italic>\u03c1<\/jats:italic>\n                      \u2009=\u20090.51,\n                      <jats:italic>\u03c1<\/jats:italic>\n                      \u2009=\u2009\u22120.56) and moderately with EQ\u20105D (\n                      <jats:italic>\u03c1<\/jats:italic>\n                      \u2009=\u2009\u22120.38). Step 3 indicated \u2264 \u22123.5 points change as clinically relevant improvement and \u22657.5 points as deterioration.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>The CHQ has a high validity to measure change in QoL. CH attack frequency influences QoL, but QoL is more strongly correlated with mental health and activity restrictions than attack frequency. Implementing the CHQ may improve understanding of disease burden, enabling more targeted treatment strategies and thus improving overall disease management.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/head.15083","type":"journal-article","created":{"date-parts":[[2025,11,13]],"date-time":"2025-11-13T12:13:11Z","timestamp":1763035991000},"page":"213-229","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Quality of life changes in cluster headache: Convergent validity, responsiveness, and interpretability of the Cluster Headache Quality of Life scale as a patient\u2010reported outcome measure"],"prefix":"10.1111","volume":"66","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9260-9336","authenticated-orcid":false,"given":"Willemijn C.","family":"Naber","sequence":"first","affiliation":[{"name":"Department of Neurology Leiden University Medical Center (LUMC)  Leiden The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0001-9233-0538","authenticated-orcid":false,"given":"Paulien J.","family":"van Tilborg","sequence":"additional","affiliation":[{"name":"Department of Neurology Leiden University Medical Center (LUMC)  Leiden The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2932-4872","authenticated-orcid":false,"given":"Roemer B.","family":"Brandt","sequence":"additional","affiliation":[{"name":"Department of Neurology Leiden University Medical Center (LUMC)  Leiden The Netherlands"},{"name":"Department of Neurology The Migraine Clinic  Amsterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Julia J.","family":"Jansen","sequence":"additional","affiliation":[{"name":"Department of Neurology Canisius Wilhelmina Ziekenhuis  Nijmegen The\u00a0Netherlands"},{"name":"Department of Pharmacy, Pharmacology and Toxicology Radboud University Medical Center  Nijmegen The\u00a0Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Leopoldine A.","family":"Wilbrink","sequence":"additional","affiliation":[{"name":"Department of Neurology Zuyderland Medical Center  Heerlen The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Wim M.","family":"Mulleners","sequence":"additional","affiliation":[{"name":"Department of Neurology The Migraine Clinic  Amsterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Erkan","family":"Kurt","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery Radboud University Medical Center  Nijmegen The\u00a0Netherlands"},{"name":"Department of Anesthesiology, Pain and Palliative Medicine Radboud University Medical Center  Nijmegen The\u00a0Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Willemijn","family":"Leen","sequence":"additional","affiliation":[{"name":"Department of Neurology Canisius Wilhelmina Ziekenhuis  Nijmegen The\u00a0Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Frank J. 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