This wiki has undergone a migration to Confluence found Here
<meta name="googlebot" content="noindex">

Essential Information for Children with Special Healthcare Needs

From HL7Wiki
Revision as of 15:07, 19 January 2017 by Michael padula (talk | contribs)
Jump to navigation Jump to search

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:

  • Biweekly calls TBD

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
  • Medications
  • Allergies
  • Immunizations

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: Neosure with additives 85 mL bolus q 4hour during day, continuous feeds 25mL/hr for 10 hours overnight
  • presents to (non-primary) Emergency Department with fever & respiratory distress
  • Encounters:
  • Discharge from hospital
  • -document device characteristics (tracheostomy, g-tube), problems (diagnoses), procedures (surgeries), feeding regimen, etc...
  • Primary Care Physician appointment
  • -capture contingency plan (if respiratory distress - consider diuretics)
  • -capture primary and subspecialty providers
  • -show care in medical home (capture details, preferences) --> how care plan is developed
  • Infant presents to Emergency Department
  • -review devices, problems, medications, and contingency plans
  • -show use in external/less familiar environments

Case 2: 9 yr old with sickle cell disease and history of stroke

Case 3: 7 year old with autism, seizure disorder, ketogenic diet with a transfer of primary care

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

    • Transition among providers -- new Medical Home
    • Non-verbal patient; communication preferences captured
    • Nutritional preferences captured then reviewed
  • possible nutrition support due to suboptimal oral intake w/ reliance on oral and / or enteral nutrition supplements
  • Indicate intolerance (but not allergy) to medication (e.g. dysphoria with valium, excessively somnolent with diphenhydramine)
    • Ketogenic diet (Charlie Foundation)
      • o Oral feedings including shakes with ketocal
      • o Possible med interactions – Rx and OTC medications compounded with minimal carbohydrate content (high priority/visibility)
      • o List primary pharmacy for compounding preferences [minimal carbohydrate content]
  • Possible med interactions – meds trialed in the past w/ poor reaction
  • Safety concerns
  • Behavior plan if there are safety issues
  • Developmental checklist / screening – date / time of last assessment
  • Has patient received OT, ST / SLP support – are they in place, are they needed and / or do we need to make any referrals
  • Cognitive, developmental delays / concerns


  • • Uptake encounter appointment with a new care team (medical home)
    • Primary Care Provider (Pediatrician)
    • Neurologist
    • Psychiatrist
    • Dietician
    • Pharmacy (to support ketogenic diet)
    • Insurance information
  • ED visit then admission: continue home meds, no OTC medications (allergy with dextrose?)
  • Preference: prefers weighted blanket

Case 4: 18 year old with Cystic Fibrosis patient transitioning from Pediatrician to College

-devices: g-tube, vibratory vest, oxygen requirement at baseline, BiPAP


    • Quarterly CF Care Center (CF Foundation Registry) check-up
    • Annual PMD Visit - pre-college visit
    • Intake at Student Health (Transition)

Aim: Transition care to new providers (new primary and subspecialty providers), communicate plan of care for pulmonary management and nutritional needs

    • Capture medications (respiratory meds - maintenance and rescue meds, enzymes, etc…)
    • Relevant labs (fat-soluble vitamins, etc..), oral glucose tolerance test - in the last year and based on guidelines (with update function – i.e. system should have a way to be able to capture updates to guidelines)
    • Respiratory support history (CPAP/BiPAP/trach vent settings)
    • Baseline FEV1 % and trend over 1 year and over 5 years (graph)
    • Prior bacterial colonization (B. cepacia, Pseudomonas) - Infection control guidelines
    • Contingency plan: If respiratory exacerbation, begin antibiotics (e.g., vancomycin and cefepime), increase frequency of nebulizer treatments
    • Lung transplant candidate
    • Social/behavioral issues - coping, stressors, etc…
    • non-adherence to medications

Case 5: 1 month old with metabolic disorder. Ornithine Transcarbamylase (OTC) Deficiency (Urea Cycle Defect)

File:Example ER Letter for Metabolic Disorder OTC.docx


  • ''Subspecialty encounter''
  • document details about metabolic specialist contact information
  • establish plan of care:
  • -Child should be triaged as soon as possible upon arrival in the Emergency Room even if he/she does not appear to be ill, because metabolic decompensation can occur very rapidly.
  • Document the following contraindications:
  • -Systemic Steroids -- Unless otherwise specified by Metabolism staff
  • -THAM (Tris hydroxymethyl aminomethane)
  • Document "COMMON ACUTE COMPLICATIONS": Hyperammonemia, Seizures, Cerebral Edema, Coma
  • -Ammonia, Venous Blood Gas, Comprehensive Metabolic Panel, Bicarbonate, CBC/differential, PT, PTT, LFTs, Plasma Amino acids [3 ml, green top tube, sodium heparin]. Send to Metabolism Lab
  • Place Peripheral IV. If unable to get venous access, place nasogastric tube.
  • Bolus: 10-20 cc/kg of Normal Saline bolus, if indicated for dehydration.
  • Continuous IV Fluids: D 10% with 0.45 NS
  • Consider details re: specialized metabolic formula (e.g., protein restriction with a specialized metabolic formula (like Cyclinex) with arginine supplementation)
  • "Emergency Room"
  • -review and execution of plan
  • -notification of Subspecialty Providers


  • 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


Please contact

  • Michael Padula
  • Russ Leftwitch