Key Points
Question
How frequently are adolescent patient portal accounts accessed by guardians?
Findings
In this cross-sectional study including 3429 adolescent accounts across 3 academic institutions, analysis of portal messages found that more than half of adolescent patient portal accounts with outbound messages were accessed by guardians. The percentage of accessed accounts was greater in children aged 13 to 14 years vs those aged 17 to 18 years.
Meaning
These findings may be useful in guiding health system approaches to protecting adolescent confidentiality when sharing health data via patient portals.
Objectives:
The aim of the study was to evaluate feasibility and utility of an electronic health record (EHR) activity to assess transitional readiness, deliver services to meet individual needs, and to track patient progress.
Methods:
We developed a Transition EHR activity (TEA) to track patients through a standardized process where transition readiness is annually assessed and services distributed based on need. The process assesses transition skills starting at age 12 years and sets goals through shared decision-making, delivers resources according to need, reviews patients’ personal medical histories, and documents healthcare transfer to adult gastroenterology. We piloted TEA among patients with inflammatory bowel disease (IBD) ages ≥12 years. Distribution to patients was measured and tolerability assessed via patient self-report evaluations.
Results:
Since launch, TEA has been distributed to all eligible patients (N = 53) with a median age of 16 (14,18) years (median [IQR]), 62% male, 58% white, 26% Hispanic at our weekly dedicated IBD clinic. All have performed the transition skills’ self-assessment and practicum, and set transition goals with their healthcare provider. Of these individuals, 41 (77%) participated in survey feedback. On a utility rating scale of 0 (not helpful at all) to 10 (very helpful), patients reported median (IQR) utility scores of 8 (7,10) for the transition readiness assessment, 9 (7,10) for transition resources provided, and 9 (7,10) for the medical history summary. Most (91%) would recommend TEA to other patients.
Conclusions:
TEA standardized delivery of resources among pediatric IBD patients and was well received and friendly to clinical workflow.
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