Essential Information for Children with Special Healthcare Needs

• Patient Care Work Group Wiki

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

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

Project Conference Calls:

• Calls part of the Patient Care - Care Plan Calls every other Wednesday (5pm Eastern)

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: 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

• • 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] - Levetiracetam (Keppra) 500mg PO BID
• Possible med interactions – meds trialed in the past w/ poor reaction
  • valium - dysphoria (could use other examples)
  • Indicate intolerance (but not allergy) to medication (e.g., excessively somnolent with diphenhydramine)
• 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

Encounter

• • 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 2: 18 year old with Cystic Fibrosis patient transitioning from Pediatrician to College

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

Encounters

• • 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 3: 1 month old with metabolic disorder. Ornithine Transcarbamylase (OTC) Deficiency (Urea Cycle Defect)

File:Example ER Letter for Metabolic Disorder OTC.docx

Encounters

• ''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].
• 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

Case 4: 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 5: 9 yr old with sickle cell disease and history of stroke

• Encounters:
• Admission/ED Visit history
• Hematologist
  • -Documents contingency plan
• Evaluation in Emergency Department for Pain Crisis
  • Hydration, baseline pain management
  • -render in browser
  • -render in printed format

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