{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,29]],"date-time":"2026-07-29T23:32:22Z","timestamp":1785367942563,"version":"3.55.0"},"reference-count":15,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2024,2,18]],"date-time":"2024-02-18T00:00:00Z","timestamp":1708214400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100011707","name":"PSP Association","doi-asserted-by":"publisher","award":["CAF\/PSP\/16\/01"],"award-info":[{"award-number":["CAF\/PSP\/16\/01"]}],"id":[{"id":"10.13039\/100011707","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100014589","name":"Chief Scientist Office, Scottish Government Health and Social Care Directorate","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100014589","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["movementdisorders.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Movement Disord Clin Pract"],"published-print":{"date-parts":[[2024,5]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Early diagnosis in progressive supranuclear palsy (PSP) and corticobasal syndrome (CBS) is important for clinical care and key to developing successful disease\u2010modifying agents. The patient\u2010dependent phases of decision\u2010making made before contact with a healthcare professional have been inadequately studied.<\/jats:p><\/jats:sec><jats:sec><jats:title>Objectives<\/jats:title><jats:p>To evaluate the patient\u2010dependent phases of decision\u2010making from symptom onset, comparing this to clinician and\/or health system delays within the overall diagnostic pathway.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Using the Anderson General Model of Total Patient Delay and a mixed\u2010methods approach in participants with PSP\/CBS and their caregivers recruited to the Scottish PSP and CBS cohort, we quantified and evaluated the determinants of \u201cappraisal\u201d, \u201cillness,\u201d and \u201cbehavioral\u201d delay, comparing this to the clinician and\/or health system delays (\u201ctreatment\u201d delay) within the overall time from symptom onset to diagnosis.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>The time from index symptom onset to diagnosis was 3.26 (interquartile range [IQR] =\u20092.42, 4.75) years in PSP and 2.58 (IQR\u2009=\u20091.69, 4.08) years in CBS. Patient appraisal delay was 24 (IQR\u2009=\u20096, 60) weeks in PSP and 8 (IQR\u2009=\u20095, 24) weeks in CBS, illness delay 0 (IQR = \u221214, 0) weeks in PSP and 0 (IQR = \u22124, 0) weeks in CBS, with little perceived behavioral delay. Determinants of delay included the non\u2010specificity of symptoms, normalization of symptoms within the context of age or normal physiological variability, and the extent of insight into new somatic symptoms.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Although patient appraisal delay contributes to overall diagnostic delay in PSP\/CBS, the greater proportion of overall diagnostic delay arises after contact with a healthcare professional (treatment delay).<\/jats:p><\/jats:sec>","DOI":"10.1002\/mdc3.13990","type":"journal-article","created":{"date-parts":[[2024,2,18]],"date-time":"2024-02-18T22:44:12Z","timestamp":1708296252000},"page":"478-487","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Total Patient Delay: A Comparison of Patient and Clinician\/Health System Delays in the Diagnosis of Progressive Supranuclear Palsy and Corticobasal Syndrome"],"prefix":"10.1002","volume":"11","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-0994-3561","authenticated-orcid":false,"given":"Diane M.A.","family":"Swallow","sequence":"first","affiliation":[{"name":"Institute of Applied Health Sciences University of Aberdeen  Aberdeen United Kingdom"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Peter","family":"Murchie","sequence":"additional","affiliation":[{"name":"Institute of Applied Health Sciences University of Aberdeen  Aberdeen United Kingdom"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carl E.","family":"Counsell","sequence":"additional","affiliation":[{"name":"Institute of Applied Health Sciences University of Aberdeen  Aberdeen United Kingdom"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2024,2,18]]},"reference":[{"key":"e_1_2_8_2_1","doi-asserted-by":"publisher","DOI":"10.1002\/mds.29322"},{"key":"e_1_2_8_3_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.2044-8309.1995.tb01047.x"},{"key":"e_1_2_8_4_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.47.1.1"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0b013e31827f0fd1"},{"key":"e_1_2_8_6_1","doi-asserted-by":"publisher","DOI":"10.1002\/mds.26987"},{"key":"e_1_2_8_7_1","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"e_1_2_8_8_1","first-page":"1","article-title":"Persistent barriers and facilitators to seeking help for a dementia diagnosis: a systematic review of 30\u2009years of the perspectives of carers and people with dementia","volume":"6","author":"Parker M","year":"2020","journal-title":"Int Psychogeriatr"},{"key":"e_1_2_8_9_1","doi-asserted-by":"publisher","DOI":"10.1111\/1467-9566.00112"},{"key":"e_1_2_8_10_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1751-9004.2010.00287.x"},{"key":"e_1_2_8_11_1","doi-asserted-by":"publisher","DOI":"10.1097\/00005650-197901000-00002"},{"key":"e_1_2_8_12_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00415-018-8817-8"},{"key":"e_1_2_8_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2015.02.010"},{"key":"e_1_2_8_14_1","unstructured":"(NICE) NIfHaCE.NICE guidline: Parkinson's disease in adults; In:2017."},{"key":"e_1_2_8_15_1","unstructured":"(SIGN) SIGN.Diagnosis and pharmacological management of Parkinson's disease: a national clinical guideline; In:2010."},{"key":"e_1_2_8_16_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00415-023-11629-x"}],"container-title":["Movement Disorders Clinical Practice"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/movementdisorders.onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/mdc3.13990","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,20]],"date-time":"2025-10-20T09:52:40Z","timestamp":1760953960000},"score":1,"resource":{"primary":{"URL":"https:\/\/movementdisorders.onlinelibrary.wiley.com\/doi\/10.1002\/mdc3.13990"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,2,18]]},"references-count":15,"journal-issue":{"issue":"5","published-print":{"date-parts":[[2024,5]]}},"alternative-id":["10.1002\/mdc3.13990"],"URL":"https:\/\/doi.org\/10.1002\/mdc3.13990","archive":["Portico"],"relation":{},"ISSN":["2330-1619","2330-1619"],"issn-type":[{"value":"2330-1619","type":"print"},{"value":"2330-1619","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,2,18]]},"assertion":[{"value":"2023-12-04","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2024-01-02","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2024-02-18","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}