Essential Information for Children with Special Healthcare Needs
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
Contents
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
- 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
- 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
- Social/behavioral issues - coping, stressors, etc…
- non-adherence to medications
Case 5: 3 year 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
- 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].
- "Emergency Room"
- -review and execution of plan
- -notification of Subspecialty Provider
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]
Questions:
Please contact
- Michael Padula padula@email.chop.edu
- Russ Leftwitch rleft@pobox.com
