Difference between revisions of "Essential Information for Children with Special Healthcare Needs"
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− | [http://wiki.hl7.org/index.php?title= | + | *[http://wiki.hl7.org/index.php?title=Patient_Care_Beta_Home Patient Care Work Group Wiki ] |
− | This page is for documents related to the '''Essential Information for Children with Special | + | 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: [http://www.hl7.org/special/Committees/projman/searchableProjectIndex.cfm?action=edit&ProjectNumber=1111 Project Summary for Essential Information for Children with Special Health Care Needs] | *The Project Scope Statement in Project insight: [http://www.hl7.org/special/Committees/projman/searchableProjectIndex.cfm?action=edit&ProjectNumber=1111 Project Summary for Essential Information for Children with Special Health Care Needs] | ||
Project Conference Calls: | 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.''' | '''A storyboard explains the series of actions in a particular scenario as an example that highlights relevant content.''' | ||
Line 19: | Line 19: | ||
*Presenting to a new healthcare provider | *Presenting to a new healthcare provider | ||
**Presenting to an Emergency Department | **Presenting to an Emergency Department | ||
− | |||
**Referral to new subspecialty provider | **Referral to new subspecialty provider | ||
**Transitioning between primary care providers | **Transitioning between primary care providers | ||
+ | **School | ||
+ | **Summer camp | ||
*Contingent Care Plan | *Contingent Care Plan | ||
Line 50: | Line 51: | ||
**drain care | **drain care | ||
**central venous access | **central venous access | ||
− | |||
*Communication | *Communication | ||
Line 66: | Line 66: | ||
*Procedures/Surgeries | *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|200px|thumb|left|Transfer of Primary Care]] |
+ | **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|200px|thumb|left|Example ER Letter for Child with Metabolic Disorder]] | ||
+ | |||
+ | [[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 | *Demographics | ||
Line 89: | Line 205: | ||
*Care Plan | *Care Plan | ||
− | [http://wiki.hl7.org/images/2/24/CpDetailedModelImg.png Care Plan Logical Information Model ] | + | [http://wiki.hl7.org/images/2/24/CpDetailedModelImg.png Care Plan Logical Information Model] |
+ | |||
== Reference Documents for Similar Content: == | == Reference Documents for Similar Content: == | ||
Line 95: | Line 212: | ||
Emergency Preparedness for Children with Special Health Care Needs | Emergency Preparedness for Children with Special Health Care Needs | ||
− | [ | + | [https://www.acep.org/Clinical---Practice-Management/Emergency-Information-Form-for-Children-With-Special-Health-Care-Needs/] |
− | [ | + | [https://www.acep.org/WorkArea/linkit.aspx?LinkIdentifier=id&ItemID=47995&libID=48023] |
[http://fl.eqhs.org/LinkClick.aspx?fileticket=mWr81gRzNBc%3D&tabid=266&mid=788 CMS Form 485] | [http://fl.eqhs.org/LinkClick.aspx?fileticket=mWr81gRzNBc%3D&tabid=266&mid=788 CMS Form 485] | ||
− | + | [http://wiki.hl7.org/index.php?title=File:CHWG_storyboards.docx Storyboard Development] | |
+ | |||
+ | |||
+ | |||
+ | Questions: | ||
+ | |||
+ | Please contact | ||
+ | *Michael Padula padula@email.chop.edu | ||
+ | *Russ Leftwitch rleft@pobox.com |
Latest revision as of 10:22, 8 November 2018
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)
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: 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
- Ketogenic diet (Charlie Foundation)
- 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
- • 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
- 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
- ''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]
Questions:
Please contact
- Michael Padula padula@email.chop.edu
- Russ Leftwitch rleft@pobox.com