Hearing Merged with Metabolic: A Marriage Made in Heaven? James G. Schmaelzle, M.C.D., CCC-A Pam King, M.P.A., RN Oklahoma 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

Oklahoma Newborn Screening a marriage made in heaven? =

Oklahoma Newborn Screening Well…….

Oklahoma Newborn Screening DETOUR GATES of HEAVEN

In the beginning…

Newborn Hearing Screening Program (NHSP)

Newborn Hearing Screening 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

Newborn Hearing Screening 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

Newborn Hearing Screening The hearing data file was then uploaded to the health departments mainframe computer A mainframe software program generated physician notification cards for infants needing follow-up when the baby was 3½ months of age

Newborn Hearing Screening 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

Newborn Hearing Screening 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

Newborn Hearing Screening 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 didnt begin until the baby was over 3 months old 3.Information about the infants health care provider was often outdated, inaccurate, or missing Challenges

Newborn Hearing Screening 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 agencys only tractor-feed printer was being used by other programs Challenges, continued

Newborn Hearing Screening 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)

Newborn Metabolic Screening 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

Newborn Metabolic Screening 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

Newborn Metabolic Screening 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

Newborn Metabolic Screening 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 Screening combined 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

Combined Newborn Screening 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

Combined Newborn Screening 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

Combined Newborn Screening 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

Combined Newborn Screening Hospital Chart Copy Pull-out - (yellow) Metabolic Screening Pull-out - (blue) Hearing Screening Pull-out - (pink)

Combined Newborn Screening 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 Screening Hearing 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 Screening Risk 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.

Combined Newborn Screening 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

Combined Newborn Screening 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

Combined Newborn Screening 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

Combined Newborn Screening 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 Screening Advantages 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

Combined Newborn Screening Advantages 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

Combined Newborn Screening Advantages 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

Combined Newborn Screening Advantages 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

Combined Newborn Screening Advantages 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?

In Oklahoma……… We know so!

Oklahoma Newborn Screening

Hearing Merged with Metabolic: A Marriage Made in Heaven? Contact Information Jim Schmaelzle Pam King Oklahoma State Department of Health 1000 NE 10 th Street Oklahoma City, OK Early Hearing Detection and Intervention Conference Renaissance Atlanta Downtown March 4, 2005