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Personalized medical information card for adults with 22q11.2 deletion syndrome: An initiative to improve communication between patients and healthcare providers
Author(s) -
Loo Joanne C. Y.,
Boot Erik,
Corral Maria,
Bassett Anne S.
Publication year - 2020
Publication title -
journal of applied research in intellectual disabilities
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.056
H-Index - 63
eISSN - 1468-3148
pISSN - 1360-2322
DOI - 10.1111/jar.12747
Subject(s) - intellectual disability , health professionals , health care , medicine , family medicine , psychology , nursing , medical education , psychiatry , economics , economic growth
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.