{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,28]],"date-time":"2026-09-28T02:32:16Z","timestamp":1790562736900,"version":"4.1.0"},"reference-count":51,"publisher":"Informa UK Limited","issue":"3","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2023,5,1]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>There is a critical need for high-quality clinical outcome assessments to capture the important aspects of communication ability of individuals with Angelman syndrome (AS). To center the perspective of caregivers, our team developed the novel Observer-Reported Communication Ability (ORCA) measure using best practice guidelines, with the goal of developing a measure that could be administered to caregivers directly without the need for a certified administrator for use in clinical trials. To refine the draft measure, we conducted two rounds of cognitive interviews with 24 caregivers and a quantitative study including 249 caregivers. The results from both studies support the overall content validity, construct validity, and the reliability of the ORCA measure for individuals with AS &amp;gt; 2 years old for use in research contexts. Future work should explore the responsiveness of ORCA measures to changes over time in a diverse sample.<\/jats:p>","DOI":"10.1352\/1944-7558-128.3.204","type":"journal-article","created":{"date-parts":[[2023,12,20]],"date-time":"2023-12-20T05:54:01Z","timestamp":1703051641000},"page":"204-218","source":"Crossref","is-referenced-by-count":28,"title":["Validation of the Observer-Reported Communication Ability (ORCA) Measure for Individuals With Angelman Syndrome"],"prefix":"10.1080","volume":"128","author":[{"given":"Christina K.","family":"Zigler","sequence":"first","affiliation":[{"name":"Christina K. Zigler, Li Lin, Molly McFatrich, and Nicole Lucas, Duke University School of Medicine"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Li","family":"Lin","sequence":"additional","affiliation":[{"name":"Christina K. Zigler, Li Lin, Molly McFatrich, and Nicole Lucas, Duke University School of Medicine"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Molly","family":"McFatrich","sequence":"additional","affiliation":[{"name":"Christina K. Zigler, Li Lin, Molly McFatrich, and Nicole Lucas, Duke University School of Medicine"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nicole","family":"Lucas","sequence":"additional","affiliation":[{"name":"Christina K. Zigler, Li Lin, Molly McFatrich, and Nicole Lucas, Duke University School of Medicine"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kelly L.","family":"Gordon","sequence":"additional","affiliation":[{"name":"Kelly L. Gordon, Duke Health"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Harrison N.","family":"Jones","sequence":"additional","affiliation":[{"name":"Harrison N. Jones, Duke University School of Medicine"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Allyson","family":"Berent","sequence":"additional","affiliation":[{"name":"Allyson Berent, Jennifer Panagoulias, and Paula Evans, The Foundation for Angelman Syndrome Therapeutics (FAST)"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jennifer","family":"Panagoulias","sequence":"additional","affiliation":[{"name":"Allyson Berent, Jennifer Panagoulias, and Paula Evans, The Foundation for Angelman Syndrome Therapeutics (FAST)"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Paula","family":"Evans","sequence":"additional","affiliation":[{"name":"Allyson Berent, Jennifer Panagoulias, and Paula Evans, The Foundation for Angelman Syndrome Therapeutics (FAST)"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bryce B.","family":"Reeve","sequence":"additional","affiliation":[{"name":"Bryce B. Reeve, Duke University School of Medicine"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"301","published-online":{"date-parts":[[2023,4,28]]},"reference":[{"key":"2023122010535580700_i1944-7558-128-3-204-Acquadro1","doi-asserted-by":"crossref","unstructured":"Acquadro,\n              C.,\n            \n            \n              Patrick,\n              D. L.,\n            \n            \n              Eremenco,\n              S.,\n            \n            \n              Martin,\n              M. 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M.,\n            \n            \n              Girman,\n              C.,\n            \n            \n              Fehnel,\n              S.,\n            \n            \n              DeMuro-Mercon,\n              C.,\n             &\n\t\t\t\t\t\tSantanello,N.\n          (2012).\n\t\t\t\t\tChoice of recall period for patient-reported outcome (PRO) measures: Criteria for consideration.\n\t\t\t\t\tQuality of Life Research, 21(6),\n\t\t\t\t\t1013\u2013\n\t\t\t\t\t1020.\n\t\t\t\t\thttps:\/\/doi.org\/10.1007\/s11136-011-0003-8","DOI":"10.1007\/s11136-011-0003-8"},{"key":"2023122010535580700_i1944-7558-128-3-204-Oller1","doi-asserted-by":"crossref","unstructured":"Oller,\n              D. K.,\n            \n            \n              Eilers,\n              R. E.,\n            \n            \n              Neal,\n              A. R.,\n             &\n\t\t\t\t\t\tSchwartz,H. K.\n          (1999).\n\t\t\t\t\tPrecursors to speech in infancy: The prediction of speech and language disorders.\n\t\t\t\t\tJournal of Communication Disorders,\n\t\t\t\t\t32(4),\n\t\t\t\t\t223\u2013\n\t\t\t\t\t245.","DOI":"10.1016\/S0021-9924(99)00013-1"},{"key":"2023122010535580700_i1944-7558-128-3-204-Patrick1","doi-asserted-by":"crossref","unstructured":"Patrick,\n              D. L.,\n            \n            \n              Burke,\n              L. B.,\n            \n            \n              Gwaltney,\n              C. J.,\n            \n            \n              Leidy,\n              N. K.,\n            \n            \n              Martin,\n              M. L.,\n            \n            \n              Molsen,\n              E.,\n             &\n\t\t\t\t\t\tRing,L.\n          (2011).\n\t\t\t\t\tContent validity\u2014Establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO Good Research Practices Task Force report: Part 2\u2014Assessing respondent understanding.\n\t\t\t\t\tValue in Health: The Journal of the International Society for Pharmacoeconomics and Outcomes Research,\n\t\t\t\t\t14(8),\n\t\t\t\t\t978\u2013\n\t\t\t\t\t988.\n\t\t\t\t\thttps:\/\/doi.org\/10.1016\/j.jval.2011.06.013","DOI":"10.1016\/j.jval.2011.06.013"},{"key":"2023122010535580700_i1944-7558-128-3-204-Pearson1","doi-asserted-by":"crossref","unstructured":"Pearson,\n              E.,\n            \n            \n              Wilde,\n              L.,\n            \n            \n              Heald,\n              M.,\n            \n            \n              Royston,\n              R.,\n             &\n\t\t\t\t\t\tOliver,C.\n          (2019).\n\t\t\t\t\tCommunication in Angelman syndrome: A scoping review.\n\t\t\t\t\tDevelopmental Medicine and Child Neurology, 61, 1266\u2013\n\t\t\t\t\t1274.\n\t\t\t\t\thttps:\/\/doi.org\/10.1111\/dmcn.14257","DOI":"10.1111\/dmcn.14257"},{"key":"2023122010535580700_i1944-7558-128-3-204-Penner1","doi-asserted-by":"crossref","unstructured":"Penner,\n              K. A.,\n            \n            \n              Johnston,\n              J.,\n            \n            \n              Faircloth,\n              B. H.,\n            \n            \n              Irish,\n              P.,\n             &\n\t\t\t\t\t\tWilliams,C. A.\n          (1993).\n\t\t\t\t\tCommunication, cognition, and social interaction in the Angelman syndrome.\n\t\t\t\t\tAmerican Journal of Medical Genetics, 46(1),\n\t\t\t\t\t34\u2013\n\t\t\t\t\t39.\n\t\t\t\t\thttps:\/\/doi.org\/10.1002\/ajmg.1320460108","DOI":"10.1002\/ajmg.1320460108"},{"key":"2023122010535580700_i1944-7558-128-3-204-Quinn1","doi-asserted-by":"crossref","unstructured":"Quinn,\n              E. 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B.,\n            \n            \n              Snyder,\n              C. F.,\n            \n            \n              Schwartz,\n              C.,\n            \n            \n              Revicki,\n              D. A.,\n            \n            \n              Moinpour,\n              C. M.,\n            \n            \n              McLeod,\n              L. D.,\n            \n            \n              Lyons,\n              J.C.,\n            \n            \n              Lenderking,\n              W. R.,\n            \n            \n              Hinds,\n              P. S.,\n            \n            \n              Hays,\n              R. D.,\n            \n            \n              Greenhalgh,\n              J.,\n            \n            \n              Gershon,\n              R.,\n            \n            \n              Feeny,\n              D.,\n            \n            \n              Fayers,\n              P. 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D.\n          (2009).\n\t\t\t\t\tUse of existing patient-reported outcome (PRO) instruments and their modification: The ISPOR good research practices for evaluating and documenting content validity for the use of existing instruments and their modification PRO Task Force report.\n\t\t\t\t\tValue Health, 12(8),\n\t\t\t\t\t1075\u2013\n\t\t\t\t\t1083.\n\t\t\t\t\thttps:\/\/doi.org\/10.1111\/j.1524-4733.2009.00603.x","DOI":"10.1111\/j.1524-4733.2009.00603.x"},{"key":"2023122010535580700_i1944-7558-128-3-204-Rowland1","doi-asserted-by":"crossref","unstructured":"Rowland,\n              C.,\n             &\n\t\t\t\t\t\tFried-Oken,M.\n          (2010).\n\t\t\t\t\tCommunication matrix: A clinical and research assessment tool targeting children with severe communication disorders.\n\t\t\t\t\tJournal of Pediatric Rehabilitation Medicine, 3,\n\t\t\t\t\t319\u2013\n\t\t\t\t\t329.\n\t\t\t\t\thttps:\/\/doi.org\/10.3233\/PRM-2010-0144","DOI":"10.3233\/PRM-2010-0144"},{"key":"2023122010535580700_i1944-7558-128-3-204-Samejima1","doi-asserted-by":"crossref","unstructured":"Samejima,\n              F.\n            \n          \n          (1969).\n\t\t\t\t\tEstimation of latent ability using a response pattern of graded scores. (Psychometrika Monograph, No. 17).\n\t\t\t\t\tPsychometric Society,\n\t\t\t\t\tRichmond, VA.","DOI":"10.1007\/BF03372160"},{"key":"2023122010535580700_i1944-7558-128-3-204-Sigafoos1","doi-asserted-by":"crossref","unstructured":"Sigafoos,\n              J.,\n            \n            \n              Woodyatt,\n              G.,\n            \n            \n              Keen,\n              D.,\n            \n            \n              Tait,\n              K.,\n            \n            \n              Tucker,\n              M.,\n            \n            \n              Roberts-Pennell,\n              D.,\n             &\n\t\t\t\t\t\tPittendreigh,N.\n          (2000).\n\t\t\t\t\tIdentifying potential communicative acts in children with developmental and physical disabilities.\n\t\t\t\t\tCommunication Disorders Quarterly, 21(2),\n\t\t\t\t\t77\u2013\n\t\t\t\t\t86.\n\t\t\t\t\thttps:\/\/doi.org\/10.1177\/152574010002100202","DOI":"10.1177\/152574010002100202"},{"key":"2023122010535580700_i1944-7558-128-3-204-Sparrow1","doi-asserted-by":"crossref","unstructured":"Sparrow,\n              S. 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C.\n          (2007).\n\t\t\t\t\tQuality criteria were proposed for measurement properties of health status questionnaires.\n\t\t\t\t\tJournal of Clinical Epidemiology, 60(1),\n\t\t\t\t\t34\u2013\n\t\t\t\t\t42.\n\t\t\t\t\thttps:\/\/doi.org\/10.1016\/j.jclinepi.2006.03.012","DOI":"10.1016\/j.jclinepi.2006.03.012"},{"key":"2023122010535580700_i1944-7558-128-3-204-USDepartment1","unstructured":"U.S. Department of Health and Human Services Food and Drug Administration\/Center for Drug Evaluation and Research.\n          (2009).\n\t\t\t\t\tGuidance for industry: Patient-reported outcome measures: use in medical product development to support labeling claims.\n\t\t\t\t\thttps:\/\/www.fda.gov\/downloads\/drugs\/guidances\/ucm193282.pdf."},{"key":"2023122010535580700_i1944-7558-128-3-204-USFoodaDrugAdministration1","unstructured":"U.S. Food & Drug Administration.\n          (2019).\n\t\t\t\t\tPatient-focused drug development guidance public workshop on guidance 4: Incorporating clinical outcome assessments into endpoints for regulatory decision-making.\n\t\t\t\t\thttps:\/\/www.fda.gov\/media\/132505\/download"},{"key":"2023122010535580700_i1944-7558-128-3-204-USFDACDERC1","doi-asserted-by":"crossref","unstructured":"U.S. Food & Drug Administration, Center for Drug Evaluation and Research, Center for Biologics Evaluation and Research, and Center for Devices and Radiological Health.\n          (2006).\n\t\t\t\t\tGuidance for industry: Patient-reported outcome measures: Use in medical product development to support labeling claims: draft guidance.\n\t\t\t\t\tHealth and Quality of Life Outcomes, 4, 79.https:\/\/doi.org\/10.1186\/1477-7525-4-79","DOI":"10.1186\/1477-7525-4-79"},{"key":"2023122010535580700_i1944-7558-128-3-204-Wetherby1","doi-asserted-by":"crossref","unstructured":"Wetherby,\n              A. M.,\n            \n            \n              Allen,\n              L.,\n            \n            \n              Cleary,\n              J.,\n            \n            \n              Kublin,\n              K.,\n             &\n\t\t\t\t\t\tGoldstein,H.\n          (2002).\n\t\t\t\t\tValidity and reliability of the communication and symbolic behavior scales developmental profile with very young children.\n\t\t\t\t\tJournal of Speech, Language, and Hearing Research, 45(6),\n\t\t\t\t\t1202\u2013\n\t\t\t\t\t1218.\n\t\t\t\t\thttps:\/\/doi.org\/10.1044\/1092-4388(2002\/097)","DOI":"10.1044\/1092-4388(2002\/097)"},{"key":"2023122010535580700_i1944-7558-128-3-204-Wetherby2","unstructured":"Wetherby,\n              A. M.,\n             &\n\t\t\t\t\t\tPrizant,G.\n          (2003).\n\t\t\t\t\tCSBS DP Manual. First normed edition.\n\t\t\t\t\tBrookes."},{"key":"2023122010535580700_i1944-7558-128-3-204-Wheeler1","doi-asserted-by":"crossref","unstructured":"Wheeler,\n              A. C.,\n            \n            \n              Sacco,\n              P.,\n             &\n\t\t\t\t\t\tCabo,R.\n          (2017).\n\t\t\t\t\tUnmet clinical needs and burden in Angelman syndrome: A review of the literature.\n\t\t\t\t\tOrphanet Journal of Rare Diseases, 12(1), 164.https:\/\/doi.org\/10.1186\/s13023-017-0716-z","DOI":"10.1186\/s13023-017-0716-z"},{"key":"2023122010535580700_i1944-7558-128-3-204-Willgoss1","doi-asserted-by":"crossref","unstructured":"Willgoss,\n              T.,\n            \n            \n              Cassater,\n              D.,\n            \n            \n              Connor,\n              S.,\n            \n            \n              Krishnan,\n              M. L.,\n            \n            \n              Miller,\n              M. T.,\n            \n            \n              Dias-Barbosa,\n              C.,\n            \n            \n              Phillips,\n              D.,\n            \n            \n              McCormack,\n              J.,\n            \n            \n              Bird,\n              L. M.,\n            \n            \n              Burdine,\n              R. D.,\n            \n            \n              Claridge,\n              S.,\n             &\n\t\t\t\t\t\tBichell,T. J.\n          (2020).\n\t\t\t\t\tMeasuring what matters to individuals with Angelman syndrome and their families: Development of a patient-centered disease concept model.\n\t\t\t\t\tChild Psychiatry & Human Development, 52, 654\u2013\n\t\t\t\t\t668.\n\t\t\t\t\thttps:\/\/doi.org\/10.1007\/s10578-020-01051-z","DOI":"10.1007\/s10578-020-01051-z"},{"key":"2023122010535580700_i1944-7558-128-3-204-Willis1","doi-asserted-by":"crossref","unstructured":"Willis,\n              G. B.\n            \n          \n          (2004).\n\t\t\t\t\tCognitive interviewing revisited: A useful technique, in theory?InPresserS.,RothgebJ. M.,CouperM. P.,LesslerJ. T.,MartinE.,MartinJ., &\n\t\t\t\t\t\tSingerE.(Eds.),Methods for testing and evaluating survey questionnaires(pp.23\u2013\n\t\t\t\t\t44).\n\t\t\t\t\tJohn Wiley & Sons.","DOI":"10.1002\/0471654728.ch2"},{"key":"2023122010535580700_i1944-7558-128-3-204-Willis2","doi-asserted-by":"crossref","unstructured":"Willis,\n              G. B.\n            \n          \n          (2005).\n\t\t\t\t\tCognitive interviewing: A tool for improving questionnaire design.\n\t\t\t\t\tSage.","DOI":"10.1037\/e538062007-001"},{"key":"2023122010535580700_i1944-7558-128-3-204-Wilson1","doi-asserted-by":"crossref","unstructured":"Wilson,\n              M.\n            \n          \n          (2009).\n\t\t\t\t\tReadability and patient education materials used for low-income populations.\n\t\t\t\t\tClinical Nurse Specialist,\n\t\t\t\t\t23, 33\u2013\n\t\t\t\t\t40.","DOI":"10.1097\/01.NUR.0000343079.50214.31"}],"container-title":["American Journal on Intellectual and Developmental Disabilities"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/meridian.allenpress.com\/ajidd\/article-pdf\/128\/3\/204\/3303017\/i1944-7558-128-3-204.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/meridian.allenpress.com\/ajidd\/article-pdf\/128\/3\/204\/3303017\/i1944-7558-128-3-204.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,1,13]],"date-time":"2026-01-13T16:35:07Z","timestamp":1768322107000},"score":1,"resource":{"primary":{"URL":"https:\/\/meridian.allenpress.com\/ajidd\/article\/128\/3\/204\/492586\/Validation-of-the-Observer-Reported-Communication"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,4,28]]},"references-count":51,"journal-issue":{"issue":"3","published-online":{"date-parts":[[2023,4,28]]},"published-print":{"date-parts":[[2023,5,1]]}},"URL":"https:\/\/doi.org\/10.1352\/1944-7558-128.3.204","relation":{},"ISSN":["1944-7558","1944-7515"],"issn-type":[{"value":"1944-7558","type":"electronic"},{"value":"1944-7515","type":"print"}],"subject":[],"published":{"date-parts":[[2023,4,28]]}}}