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Essential Information for Children with Special Healthcare Needs

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Child Health Work Group Wiki

This page is for documents related to the Essential Information for Children with Special Healthcare Needs project.


Project Conference Calls: The calls fall every 2 weeks beginning at 4pm ET. Next Monday May 18, 2015


Storyboard Description

A storyboard explains the series of actions in a particular scenario as an example that highlights relevant content.

Potential storyboards to include aspects of the the following examples

  • Presenting to a new healthcare provider
    • Presenting to an Emergency Department
    • Referral to new subspecialty provider
    • Transitioning between primary care providers
    • School
    • Summer camp
  • Contingent Care Plan
    • Pumping ventriculoperitoneal shunt
    • Seizure onset
    • Sickle cell crisis
    • Respiratory distress due to airway obstruction/secretions
    • Critical/difficult airway for intubation
    • Congestive heart failure
  • Nutrition
    • Complex enteral feeding regimens
    • Parenteral nutrition
    • Dietary preferences/restrictions
  • Special device needs
    • hearing aids
    • tracheostomy/ventilators
    • feeding tubes
      • nasogastric/orogastric tubes
      • gastric tubes/buttons
      • GJ tubes
    • feeding pumps
    • nebulizer
    • apnea monitors
    • ostomy care
    • wound care
    • drain care
    • central venous access
  • Communication
    • Identifying needs of non-verbal patients
    • Indications of pain, comfort, happiness
  • Patient/Parental Preferences
    • food preferences
  • Contraindicated procedures (and rationale)
    • No BP cuff on extremity
    • No vascular access (e.g., due to venous clot)
  • Problems/Diagnoses
  • Procedures/Surgeries


Current Storyboards in Progress:

Case 1: 6 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 xx mL 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.

File:Transfer of Primary Care Storyboard -Draft 1.docx

Case 4:

  • Toddler with metabolic disorder.


Sections/Templates

  • Demographics
  • Provider Contacts
    • Provider Name, (sub)specialty, Phone, Fax, Email
  • Problem List (Diagnoses)
  • Baseline Exam and Vital Signs (include?)
  • Procedures/Surgical History
  • Contraindications
    • Allergies
    • Foods to be avoided (and rationale)
    • Procedures to be avoided (and rationale)
  • Immunizations
  • Medications
  • Contingency Plan
  • Care Plan

Care Plan Logical Information Model


Reference Documents for Similar Content:

Emergency Preparedness for Children with Special Health Care Needs [1] [2]

CMS Form 485

Storyboard Development


Questions:

Please contact

  • Michael Padula padula@email.chop.edu
  • Russ Leftwitch rleft@pobox.com