SurveyJournal of applied research in intellectual disabilities : JARID2020

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

Joanne C Y Loo, Erik Boot, Maria Corral and 1 others

PMID 32407568

WHAT IT FOUND

Most patients and caregivers who used a clinic-issued medical information card found it helpful for safety and convenience.

However, only 46% of those surveyed had used the card at least once. The card required significant staff time to create and verify.

Key findings

01Of the 48 respondents, 22 had used the personalized medical information card at least once, and 19 of those users found it very helpful.

02Respondents reported the card improved safety by preventing medication duplication and allergic reactions, and aided in locating wandering patients.

03Creating the cards required physicians to spend 20 to 45 minutes reviewing records, and clinic staff spent hours gathering information from various sources.

STILL TO COME

How it was doneWhat they found

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What it does not show

Small sample size (52 patients) from a single specialized clinic. Highly resource-intensive to implement: physicians spent 20-45 minutes per card, and staff spent hours gathering records. The study did not systematically investigate why some patients did not use the card. Generalizability is limited by the unique multidisciplinary infrastructure of the originating clinic.

Declared interests

The authors declared no conflicts of interest. The initiative was funded by the clinic as a quality improvement project.

The easy way to misread this

Do not assume this intervention is easily scalable. The clinic’s ability to generate these cards relied on extensive existing medical records and significant physician time per patient, which may not be feasible in standard practice settings.

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The study

Participants
48 respondents (19 patients, 29 caregivers) of 52 card recipients
Certainty of evidence
Low

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    Cite

    Joanne C Y Loo, Erik Boot, Maria Corral, et al. Personalized medical information card for adults with 22q11.2 deletion syndrome: An initiative to improve communication between patients and healthcare providers. Journal of applied research in intellectual disabilities : JARID. 2020.

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