{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,6]],"date-time":"2026-10-06T13:33:23Z","timestamp":1791293603948,"version":"4.1.0"},"reference-count":23,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2020,5,14]],"date-time":"2020-05-14T00:00:00Z","timestamp":1589414400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100000025","name":"National Institute of Mental Health","doi-asserted-by":"publisher","award":["U01 MH101723\u201001(3\/5)"],"award-info":[{"award-number":["U01 MH101723\u201001(3\/5)"]}],"id":[{"id":"10.13039\/100000025","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000024","name":"Canadian Institutes of Health Research","doi-asserted-by":"publisher","award":["MOP #111238"],"award-info":[{"award-number":["MOP #111238"]}],"id":[{"id":"10.13039\/501100000024","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000024","name":"Canadian Institutes of Health Research","doi-asserted-by":"publisher","award":["MOP #97800"],"award-info":[{"award-number":["MOP #97800"]}],"id":[{"id":"10.13039\/501100000024","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Research Intellect Disabil"],"published-print":{"date-parts":[[2020,11]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Many individuals with intellectual disabilities and their caregivers struggle to provide accurate and complete information to healthcare providers.<\/jats:p><\/jats:sec><jats:sec><jats:title>Method<\/jats:title><jats:p>The present authors provided personal medical information cards (PMICs) containing contact and medical information to 52 Canadian adults with 22q11.2 deletion syndrome, a genetic condition associated with intellectual disability. The authors invited them and\/or their caregivers to complete a user satisfaction survey concerning usage of the card.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Forty\u2010eight (92%) patients or their caregivers completed the survey. Twenty\u2010two (46%) respondents used the PMIC over a median of 8\u00a0months during encounters with doctors and other professionals, and a majority of these used it more than once. Users reported finding the PMIC \u201cvery helpful\u201d (86%) or \u201chelpful\u201d (14%), providing necessary information, speeding up interactions with professionals and helping avoid repeat storytelling.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Providing a PMIC to individuals with intellectual disabilities and their caregivers could help improve patient safety and assist in advocacy.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jar.12747","type":"journal-article","created":{"date-parts":[[2020,5,14]],"date-time":"2020-05-14T22:46:27Z","timestamp":1589496387000},"page":"1534-1540","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":5,"title":["Personalized medical information card for adults with 22q11.2 deletion syndrome: An initiative to improve communication between patients and healthcare providers"],"prefix":"10.1111","volume":"33","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8429-6109","authenticated-orcid":false,"given":"Joanne C. Y.","family":"Loo","sequence":"first","affiliation":[{"name":"The Dalglish Family 22q Clinic Toronto General Hospital Toronto ON Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0593-1539","authenticated-orcid":false,"given":"Erik","family":"Boot","sequence":"additional","affiliation":[{"name":"The Dalglish Family 22q Clinic Toronto General Hospital Toronto ON Canada"},{"name":"'s Heeren Loo Zorggroep Amersfoort The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3124-0897","authenticated-orcid":false,"given":"Maria","family":"Corral","sequence":"additional","affiliation":[{"name":"The Dalglish Family 22q Clinic Toronto General Hospital Toronto ON Canada"},{"name":"Department of Psychiatry University Health Network, and Department of Psychiatry, University of Toronto Toronto ON Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0681-7279","authenticated-orcid":false,"given":"Anne S.","family":"Bassett","sequence":"additional","affiliation":[{"name":"The Dalglish Family 22q Clinic Toronto General Hospital Toronto ON Canada"},{"name":"Department of Psychiatry University Health Network, and Department of Psychiatry, University of Toronto Toronto ON Canada"},{"name":"Clinical Genetics Research Program Centre for Addiction and Mental Health Toronto ON Canada"},{"name":"Division of Cardiology Toronto Congenital Cardiac Centre for Adults at the Peter Munk Cardiac Centre Department of Medicine, and Toronto General Hospital Research Institute University Health Network Toronto ON Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2020,5,14]]},"reference":[{"key":"e_1_2_7_2_1","unstructured":"22q Foundation Australia and New Zealand. (2018).22q\u2010ordination app: Your personal 22q coordination centre. Retrieved fromhttps:\/\/www.22q.org.au\/22q\u2010coordination\u2010portal. Accessed February 8 2020."},{"key":"e_1_2_7_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2011.02.039"},{"key":"e_1_2_7_4_1","doi-asserted-by":"publisher","DOI":"10.1136\/hrt.2007.122671"},{"key":"e_1_2_7_5_1","unstructured":"City of Toronto. (2020).In Case of Emergency \u2013 Medical Information Sheet. Retrieved fromhttps:\/\/www.toronto.ca\/community\u2010people\/public\u2010safety\u2010alerts\/emergency\u2010preparedness\/before\u2010an\u2010emergency\/. Accessed February 8 2020."},{"key":"e_1_2_7_6_1","doi-asserted-by":"publisher","DOI":"10.1038\/gim.2014.175"},{"key":"e_1_2_7_7_1","volume-title":"Measuring Up 2018","author":"Health Quality Ontario","year":"2018"},{"key":"e_1_2_7_8_1","unstructured":"Hospital for Sick Children. (2007).Good 2 Go Transition Program\u2014MyHealth Passport. Retrieved fromhttps:\/\/www.sickkids.ca\/myhealthpassport\/. Accessed February 3 2020."},{"key":"e_1_2_7_9_1","unstructured":"Kamper M.(2018).22q Coordination Portal and App. Poster session presented at the 11th Biennial International 22q11.2 Conference Whistler BC Canada."},{"key":"e_1_2_7_10_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.cmpb.2005.10.006"},{"key":"e_1_2_7_11_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41436-019-0603-1"},{"key":"e_1_2_7_12_1","doi-asserted-by":"publisher","DOI":"10.1038\/nrdp.2015.71"},{"key":"e_1_2_7_13_1","doi-asserted-by":"publisher","DOI":"10.1071\/AH090136"},{"key":"e_1_2_7_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0027-9684(15)30728-8"},{"key":"e_1_2_7_15_1","doi-asserted-by":"publisher","DOI":"10.1111\/jspn.12078"},{"key":"e_1_2_7_16_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjqs-2015-004411"},{"key":"e_1_2_7_17_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijmedinf.2011.02.007"},{"key":"e_1_2_7_18_1","doi-asserted-by":"publisher","DOI":"10.1093\/intqhc\/mzq073"},{"key":"e_1_2_7_19_1","volume-title":"Canada EMR Certification Program: Certified EMR Offerings","author":"OntarioMD Inc","year":"2020"},{"key":"e_1_2_7_20_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.38645"},{"key":"e_1_2_7_21_1","doi-asserted-by":"publisher","DOI":"10.7861\/clinmedicine.16-5-465"},{"issue":"5","key":"e_1_2_7_22_1","first-page":"640","article-title":"Quebec puts smart\u2010card technology on health care back burner","volume":"166","author":"Pinker S.","year":"2002","journal-title":"Canadian Medical Association Journal"},{"key":"e_1_2_7_23_1","volume-title":"Personal Medical Information Kits","author":"Regional Municipality of York","year":"2019"},{"issue":"4","key":"e_1_2_7_24_1","first-page":"499","article-title":"The use and usefulness of MyHealth passport: An online tool for the creation of a portable health summary","volume":"3","author":"Wolfstadt J.","year":"2011","journal-title":"International Journal of Child and Adolescent Health"}],"container-title":["Journal of Applied Research in Intellectual Disabilities"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fjar.12747","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/jar.12747","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/jar.12747","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/jar.12747","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,4]],"date-time":"2023-09-04T06:29:46Z","timestamp":1693808986000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/jar.12747"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,5,14]]},"references-count":23,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2020,11]]}},"alternative-id":["10.1111\/jar.12747"],"URL":"https:\/\/doi.org\/10.1111\/jar.12747","archive":["Portico"],"relation":{},"ISSN":["1360-2322","1468-3148"],"issn-type":[{"value":"1360-2322","type":"print"},{"value":"1468-3148","type":"electronic"}],"subject":[],"published":{"date-parts":[[2020,5,14]]},"assertion":[{"value":"2019-09-13","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2020-04-19","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2020-05-14","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}