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Talk:Essential Information for Children with Special Healthcare Needs

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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.



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)

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