Personalized medical information card for adults with 22q11.2 deletion syndrome: An initiative to improve communication between patients and healthcare providers. Issue 6 (14th May 2020)

• Record Type: Journal Article
• Authors: Loo, Joanne C. Y.; Boot, Erik; Corral, Maria; Bassett, Anne S.
• Is Part Of: Journal of applied research in intellectual disabilities. Volume 33:Issue 6(2020:Nov.)
• Page Start: 1534
• Page End: 1540
• Publication Date: 2020-05-14
• Subjects: 22q11.2 deletion syndrome -- intellectual disability -- multisystem condition -- patient–healthcare provider communication -- personalized medical information card -- portable medical records; Learning disabilities -- Periodicals; Mental retardation -- Periodicals; Learning disabled -- Periodicals; People with mental disabilities -- Periodicals; 616.85880072
• DOI: 10.1111/jar.12747
• Languages: English
• ISSNs: 1360-2322

Abstract

Abstract: 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.