Personalized medical information card for adults with 22q11.2 deletion syndrome: An initiative to improve communication between patients and healthcare providers

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.

Keywords: 22q11.2 deletion syndrome; intellectual disability; multisystem condition; patient-healthcare provider communication; personalized medical information card; portable medical records.