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It is not known whether these COAs mirror patient experience of their disease. Here we test the hypothesis that ataxia COAs are related to and reflect patient reported symptoms and impact of illness. A concept library of symptoms and activities impacted by ataxia was created by reviewing (a) concept elicitation data from surveys completed by 147 ataxia patients and 80 family members and (b) cognitive debrief data from focus groups of 17 ataxia patients used to develop the Patient Reported Outcome Measure of Ataxia. These findings were mapped across the items on 4 clinical measures of ataxia (SARA, BARS, ICARS and FARS). Symptoms reported most commonly related to balance, gait or walking, speech, tremor and involuntary movements, and vision impairment. Symptoms reported less frequently related to hand coordination, loss of muscle control, dizziness and vertigo, muscle discomfort or pain, swallowing, and incontinence. There was a mosaic mapping of items in the observer-derived ataxia COAs with the subjective reports by ataxia patients\/families of the relevance of these items to their daily lives. Most COA item mapped onto multiple real-life manifestations; and most of the real-life impact of disease mapped onto multiple COA items. The 4 common ataxia COAs reflect patient reported symptoms and impact of illness. These results validate the relevance of the COAs to patients\u2019 lives and underscore the inadvisability of singling out any one COA item to represent the totality of the patient experience.<\/jats:p>","DOI":"10.1007\/s12311-022-01494-1","type":"journal-article","created":{"date-parts":[[2022,12,10]],"date-time":"2022-12-10T02:02:46Z","timestamp":1670637766000},"page":"1257-1273","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":21,"title":["Ataxia Rating Scales Reflect Patient Experience: an Examination of the Relationship Between Clinician Assessments of Cerebellar Ataxia and Patient-Reported Outcomes"],"prefix":"10.1007","volume":"22","author":[{"given":"Michele H.","family":"Potashman","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Miranda L.","family":"Mize","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Melissa W.","family":"Beiner","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Samantha","family":"Pierce","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Vladimir","family":"Coric","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0706-5125","authenticated-orcid":false,"given":"Jeremy D.","family":"Schmahmann","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2022,12,10]]},"reference":[{"issue":"Pt 4","key":"1494_CR1","doi-asserted-by":"publisher","first-page":"561","DOI":"10.1093\/brain\/121.4.561","volume":"121","author":"JD Schmahmann","year":"1998","unstructured":"Schmahmann JD, Sherman JC. 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Her disclosures are that she is employed by and owns shares in Biohaven Pharmaceuticals. Miranda Mize declares no conflict of interests and has no disclosures. Melissa Beiner declares no conflict of interests. Her disclosures are that she is employed by and owns shares in Biohaven Pharmaceuticals. Samantha Pierce declares no conflict of interests and has no disclosures. Vladimir Coric declares no conflict of interests and discloses that he is employed by and owns shares in Biohaven Pharmaceuticals. Dr. Schmahmann declares no conflict of interests. His disclosures are that he is site PI for Biohaven NCT03701399, NCT02960893 and NCT03952806, consults for Medavante; receives royalties from Oxford University Press, Elsevier, MacKeith Press, and Springer; and is the inventor of the Brief Ataxia Rating Scale, Cerebellar Cognitive Affective\/Schmahmann Syndrome Scale, the Patient Reported Outcome Measure of Ataxia, and the Cerebellar Neuropsychiatry Rating Scale which are licensed to the General Hospital Corporation.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of Interest"}}]}}