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ERIC Number: EJ1273042
Record Type: Journal
Publication Date: 2020-Nov
Pages: 7
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1360-2322
EISSN: N/A
Personalized Medical Information Card for Adults with 22q11.2 Deletion Syndrome: An Initiative to Improve Communication between Patients and Healthcare Providers
Loo, Joanne C. Y.; Boot, Erik; Corral, Maria; Bassett, Anne S.
Journal of Applied Research in Intellectual Disabilities, v33 n6 p1534-1540 Nov 2020
Background: Many individuals with intellectual disabilities and their caregivers struggle to provide accurate and complete information to healthcare providers. Method: 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. Results: Forty-eight (92%) patients or their caregivers completed the survey. Twenty-two (46%) respondents used the PMIC over a median of 8 months during encounters with doctors and other professionals, and a majority of these used it more than once. Users reported finding the PMIC "very helpful" (86%) or "helpful" (14%), providing necessary information, speeding up interactions with professionals and helping avoid repeat storytelling. Conclusion: Providing a PMIC to individuals with intellectual disabilities and their caregivers could help improve patient safety and assist in advocacy.
Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://bibliotheek.ehb.be:2191/en-us
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: National Institute of Mental Health (DHHS/NIH)
Authoring Institution: N/A
Identifiers - Location: Canada
Grant or Contract Numbers: U01MH101723013/5