Transcript NBS Case Management Processes - Texas Department of State

DSHS
Texas Newborn Screening
Program Processes
Susan Tanksley, PhD
David Martinez
April 10, 2008
NBS Case Management FollowUp Components
 Short-Term
Follow-Up
 Frequent Communication with
Health Care Providers
 Frequent Reporting of follow-up
results
 Monitoring
NBS Case Management Follow-Up
Components continued:
Documentation
 Family Involvement
 Continuous Education
 Long-Term Follow-up
 Consultants/Sub-specialist Participation

Case Management Process Flowcharts
Case Management (General High Level)
 Initial Notification of Abnormal Screen

- Case Management activities
- Physician/Facility/Parent activities
CAH (Congenital Adrenal Hyperplasia)
 GAL (Galactosemia)

Case Management Process Flowcharts
continued:
Hemoglobinopathy
 PKU (Phenylketonuria)
 Hypothyroidism

NBS Case Management General Process Flow
Case Creation:
Abnormal result
notification received
Very
abnormal specimens are faxed
to CM for immediate action
by nurses. An abnormal result creates a
case in LIMS.
immediately
CM confirms receipt w/lab for very abnormal results.
InitialNotification of
Abnormal
Result
Possible
Actions Needed -(dependent on
& screen type)
-Repeat Screen
-Blood work, Diagnostic Testing
-Referral to Specialist
disorder
Conduct/Continue follow-up activities until resolution.
Action taken
by PCP/Physician?
YES
A
NO
NBS Case Management General Process Flow Continued
A
YES
Patient cleared from DX or
DX patient referred to
Specialist?
Document clinical feedback in
LIMS to complete short-term
follow-up
END
NO
Initial Notification of Abnormal Screen

Case Management Responsibilities
- Can Doctor be contacted? If yes, provide
results and recommend action
- Determine if baby is in hospital
- Request assistance with locating parent
- Research child and family locations
- Attempt to contact family, provide results
obtain doctor information
Initial Notification of Abnormal Screen
continued:

Case Management responsibilities continued:
Check Medicaid database, other resources
- Utilize Regional Social Workers to assist with locating
a family/connecting family and providers with services
- Involve other agencies including law enforcement if
necessary
- Repeat steps necessary to clear a newborn or to
obtain a diagnosis
-
Initial Notification of Abnormal Screen
continued:

Physician/Facility/Parents Responsibilities
Doctor agrees to follow-up with
newborn/family
- Doctor agrees to scheduling appointments,
take necessary steps to obtain confirmed
diagnosis
- Hospitals assist with locating parent
- CM contacts parents,
-
Initial Notification of Abnormal Screen
continued:

Physician/Facility/Parents Responsibilities
Case Management provides results and
recommends action, parents act
- Parent provides PCP information to Case
Management
- If no PCP for newborn, parent must obtain
PCP, may need to take newborn to ER
- Parent must follow-up to ensure newborn
receives treatment and care if diagnosed
-
ACT Sheets
Act sheets are adapted from the American
College of Medical Genetics
 ACT sheets are provided to doctors as
recommended actions or immediate
actions

ACT Sheets continued:

All ACT Sheets contain the following
information:
- Differential Diagnosis
- Condition Description
- Action Box
Medical Emergency: Take the Following
IMMEDIATE Actions
 You Should Take the Following Actions

ACT Sheets continued:
Diagnostic Evaluation
 Clinical Observations
 Additional Information – website resources

Case Management Long-Term FollowUp
Begins at the point a diagnosis is made
 CM requests periodic reporting of child
progress
 General Information Requested

- Child still under doctor’s care
Moved
 Lost to follow-up
 Deceased
 Referred

Case Management Long-Term FollowUp continued:
Child under treatment/medications/diet
 Has child been hospitalized?
 Has child seen specialist?
 Are parents aware of the diagnosis?
 Do parents understand the disorder?
 Has genetic counseling been provided?

Case Management Long-Term FollowUp continued:

Disorder specific information requested
(examples)
- PKU – How often phenylalanine levels
monitored?
- Sickle Cell Disease – Have risk factors of the
disease been explained to the parents?
- CAH – physical development, genitalia, acute
illness
Key Points in the Process






Immediate notification
PCP/Specialist
involvement
Family Involvement
Confirmatory/Additional testing as needed
Report results to CM
Genetic testing for family




Diagnosis obtained
Doctor/Family Education
Treatment is delivered as
soon as possible
Lifetime care for some
disorders
Questions?