Talk:Essential Information for Children with Special Healthcare Needs

Prior WG meetings on this topic have included:

• Details re: Modeling

• Nutritional Overview

• Storyboard examples

Agenda for 2/2/25:

• provide greater detail for storyboard cases

Case 1: 18 month old ex-25wk preterm infant with h/o bronchopulmonary dysplasia, complex device needs

• ventilator dependent with tracheostomy
• s/p Nissen and g-tube: gastric-tube feedings: pediasure xxmL bolus q 4hour during day, continuous feeds 10 hours overnight

presents to (non-primary) Emergency Department with fever & respiratory distress

• detail device characteristics

-show care in medical home (capture details, preferences) --> how care plan is developed -show use in external/less familiar environments -mechanisms for updating information

(any opportunity for parental input… need to follow other examples of inclusion of patient/family input)

Will need to determine potential source (e.g., location within EHR) for this information.

Case 2: 9 yr old with pervasive developmental disorder, seizure disorder, food aversion, struggles with weight gain

• capture food preference (textures) for patient in record -- at primary provider appointment
• show review of preference in at Camp or in School
• contingency plan (i.e., if seizures, consider increasing phenobarbital dose…. may give load IV or enterally)

• Pre-camp visit
• -review of food preferences
• -medication and problem list review
• -contingency plan
• Form review
• -render in browser
• -render in printed format
• Presenting with seizures in new setting (TBD)

Case 3: Transition among providers.

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Recent notes:

• reviewed project to date
• discussed rough drafts of existing story boards (including Emergency Care)
• high-level review Care Plan Logical Model (Stephen Chu)
• discussed aiming to use existing models (Enrique to facilitate)
• transition among providers model in development (Pallavi - lead)
• communication preferences
• dietary preferences (Carolyn)

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• • Will highlight key features in the document - including priority level (discuss with Gay)