hearing merged with metabolic: a marriage made in heaven?

Hearing Merged with Metabolic:A Marriage Made in Heaven?

James G. Schmaelzle, M.C.D., CCC-A

Pam King, M.P.A., RNOklahoma State Department of Health

Oklahoma City

2005 Early Hearing Detection and Intervention Conference

Renaissance Atlanta Downtown

March 4, 2005

Oklahoma Newborn Screening

Newborn Hearing Screening

Newborn Metabolic Screening

a marriage made in heaven?

Well…….

DETOUR

GATES of HEAVEN

In the beginning…

Newborn HearingScreening Program

(NHSP)

• Risk-register hearing screening began in 1983

• Physiologic hearing screening was added in 1998

• Birth sites recorded results and demographics on a newborn hearing screening hospital questionnaire

• Completed forms were mailed to the state health department

• NHSP office staff checked and “coded” each form

• Coded questionnaires were sent to agency keypunch (contractor after 1990) for conversion into a data file

• The hearing data file was then uploaded to the health department’s mainframe computer

• A mainframe “software” program generated physician notification “cards” for infants needing follow-up when the baby was 3½ months of age

• When the baby was 4 months of age, the software program also generated parent notification “cards” for infants needing follow-up hearing evaluation

• If no response was received from the first mailing, a second notification was generated at 8 months

• When NHSP staff received follow-up hearing evaluation results or a change of address for an infant, the new information was added to the database via keypunch

• The system software generated a “standardized” yearly statistical report

1. “Coding” 50,000 forms a year was tine consuming and tedious for staff

2. Because “hearing data” was not yet in the system, follow-up didn’t begin until the baby was over 3 months old

3. Information about the infant’s health care provider was often outdated, inaccurate, or missing

Challenges

4. No way to customize correspondence to physicians and parents on the pre-printed 8½” by 3½” notification cards

5. Printing of notification cards was often delayed because agency’s only tractor-feed printer was being used by other programs

Challenges, continued

6. Program staff was unable to easily correct errors in database

7. Computer programmer needed to produce even the simplest data summary reports

8. The Health Department planned to phase out the mainframe computer system by 2002

Challenges, continued

Newborn Metabolic Disorder

Screening Program(NMDSP)

• Metabolic screening began in 1965

• Records were maintained in a laboratory “paper” file

• Follow-up was provided through telephone calls and typed letters to physicians and parents

• An agency “metabolic” database was established in the mid-1970s

• Laboratory personnel entered demographics and screening results

• This newer system was capable of generating correspondence to physicians and families when follow-up was needed

• A Neometrics designed DOS based system capable of generating appropriate correspondence automatically based on laboratory results was installed in 1989

• The system allowed for the creation of customized and personalized letters to parents and physicians

• Reports of screening percentages, results by disorder, etc. could be generated by program staff

• A “Windows” version of the Neometrics software was installed in 1999

• The newer version allowed staff to operate all features of the program from their desktop computer rather than a stand-alone system

Hearing Screeningcombined with

Metabolic Disorder Screening

Combined Newborn Screening

• The NHSP and the NMDSP were placed under the same service chief in 1998

• The NHSP was now collecting physiologic hearing results, but because of its tracking system, was unable to correspond with parents and physicians in a timely manner

• To remedy the NHSP tracking difficulties, the service chief and both program managers began to look for ways to link the follow-up programs

• The NHSP applied for and was awarded a HRSA/MCHB grant in 2001

• These funds were used to combine the databases and provide the NHSP with an enhanced tracking system

• The public health laboratory agreed to enter hearing results at the same time they entered the demographic information into the lab database

• In 2001, the NHSP, the NMDSP, and the lab worked diligently to combine the hearing screening questionnaire and the blood-spot form

• The resulting new form included an area to record hearing screening results as well as hearing risk status

• It also included:1. A “chart copy” hospital pull-out

2. A metabolic educational parent pull-out

3. A hearing results/educational parent pull-out

Hospital Chart Copy Pull-out - (yellow)

Metabolic Screening Pull-out - (blue)Hearing Screening Pull-out - (pink)

Hearing Screening Results:

Right Ear Left Ear Screen Method Pass Pass ABR Other (Specify)____ Refer Refer OAE

If not screened, reason: Technical problem No equipment Delayed Caregiver refused Baby discharged Other______

Combined Newborn ScreeningHearing risk status

Blood relatives of the infant have a permanent hearing loss that began at birth or in early childhood.

Question refers to congenital childhood hearing loss -- NOT hearing loss due to accidents, illness (i.e., ear infections, fevers, meningitis) or the aging process.

Infant is suspected of having a congenital infection (neonatal herpes, cmv, rubella, syphilis, toxoplasmosis).

Question addresses whether the infant has experienced any of the above conditions.

Combined Newborn ScreeningRisk status, cont.

Infant has craniofacial anomalies (pinna/ear canal abnormality, cleft lip/palate, hydrocephalus).

Infant had exchange transfusion.

Infant has serum bilirubin level ≥ 15 mg/dL.

Infant was placed in a Level II or III nursery for more than 24 hours.

• Neometrics designed and installed a “hearing-screening” module in mid-2002 at a cost of $85,000

• The NHSP developed appropriate parent and physician “hearing” letters as well as follow-up result forms

• Cross-training was provided for the NHSP and NMDSP support personnel allowing staff from either program to generate correspondence for either program

• Hospitals were provided information regarding the use of the new forms via correspondence and in-service training starting in June, 2002

• The Voice Response System (used by providers to access screening results) was upgraded to include hearing results along with metabolic results

• Hospitals were encouraged to report hearing results on the combined blood-spot form beginning August 1, 2002

• The program accepted hearing results on either the the new blood-spot form or the old NHSP hospital questionnaire through 2002

• Since January 1, 2003 all birthing sites have been reporting hearing screening results on the combined form

Combined Newborn ScreeningAdvantages

• Hospital staff complete only one form to supply demographics for both hearing and metabolic disorder screening

• Education of hospital staff is simplified since personnel from either program can provide the appropriate training

• Demographics/data for both programs are entered by the same laboratory staff

• Hearing results and metabolic results are available in the tracking system at the same time – usually within a week of birth

• Both NHSP and NMDSP staff can generate appropriate correspondence for either program

• Support staff from both programs have access to the same database and can field telephone calls from providers and parents about either program

• Physicians providing follow-up for infants receive both hearing results and metabolic results on the same laboratory mailer

• Appropriately credentialed providers obtain both hearing and metabolic results through the same voice response system

• Current program statistics by disorder, hospital, county of birth, etc. can be generated by program support staff

• Follow-up results for either program are entered easily into the combined database

• Updating demographics for one program updates them for both programs

• Both programs are able to track and provide individualized follow-up for infants and their families in a timely manner

Is combining newborn hearing screening with newborn metabolic disorder screening really a marriage made in heaven?