Essential Information for Children with Special Healthcare Needs

Child Health Work Group Wiki

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

• The Project Scope Statement in Project insight: Project Summary for Essential Information for Children with Special Health Care Needs

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
• 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: pediasure xx mL bolus q 4hour during day, continuous feeds 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 Encounters:

• Hematologist
  • -Documents contingency plan
• Evaluation in Emergency Department for Pain Crisis
  • Hydration, baseline pain management
  • -render in browser
  • -render in printed format

Case 3: 7 year old with autism File:Transfer of Primary Care Storyboard -Draft 1.docx

• • Transition among providers.
  • Non-verbal patient; communication preferences captured
  • Nutritional preferences captured then reviewed

Encounter

• Scheduling an appointment with a new Primary Care Provider (Pediatrician)

Case 4: 18 year old with Cystic Fibrosis patient transitioning from Pediatrician to College -devices: g-tube, vibratory vest, ?BiPAP

Encounters

• • Quarterly CF Care Center 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
  • Baseline FEV1 %
  • Prior bacterial colonization (B. cepacia) - Infection control guidelines (Isolation)
  • Lung transplant candidate

Case 5: 3 year old with metabolic disorder. Ornithine Transcarbamylase (OTC) Deficiency (Urea Cycle Defect)

File:Example ER Letter for Metabolic Disorder OTC.docx

"Encounter:"

• Subspecialty encounter
• Emergency Room
  • Management for Intercurrent Illness

Baby 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.

• • Notify Subspecialty Provider
  • COMMON ACUTE COMPLICATIONS: Hyperammonemia, Seizures, Cerebral Edema, Coma
• CONTRAINDICATIONS:
  • Systemic Steroids-- Unless otherwise specified by Metabolism staff
  • THAM (Tris hydroxymethyl aminomethane)

• Plan:
• LABORATORY EVALUATION [STAT]

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

• • MANAGEMENT:

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 Rate: x1.5 maintenance [IF NO INCREASED INTRACRANIAL PRESSURE].

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