Hearing Merged with Metabolic: A Marriage Made in Heaven?

1. 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

2. Oklahoma Newborn Screening + Newborn Metabolic Screening Newborn Hearing Screening

3. Oklahoma Newborn Screening = a marriage made in heaven?

4. Oklahoma Newborn Screening Well…….

5. Oklahoma Newborn Screening GATES of HEAVEN DETOUR

6. In the beginning…

7. Newborn HearingScreening Program(NHSP)

8. 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

9. 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

10. Newborn Hearing Screening • 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

11. 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

12. 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

13. Newborn Hearing Screening Challenges • “Coding” 50,000 forms a year was tine consuming and tedious for staff • Because “hearing data” was not yet in the system, follow-up didn’t begin until the baby was over 3 months old • Information about the infant’s health care provider was often outdated, inaccurate, or missing

14. Newborn Hearing Screening Challenges, continued • No way to customize correspondence to physicians and parents on the pre-printed 8½” by 3½” notification cards • Printing of notification cards was often delayed because agency’s only tractor-feed printer was being used by other programs

15. Newborn Hearing Screening Challenges, continued • Program staff was unable to easily correct errors in database • Computer programmer needed to produce even the simplest data summary reports • The Health Department planned to phase out the mainframe computer system by 2002

16. Newborn Metabolic DisorderScreening Program(NMDSP)

17. 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

18. 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

19. 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

20. 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

21. Hearing Screeningcombined withMetabolic Disorder Screening

22. 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

23. 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

24. 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

25. Combined Newborn Screening • The resulting new form included an area to record hearing screening results as well as hearing risk status • It also included: • A “chart copy” hospital pull-out • A metabolic educational parent pull-out • A hearing results/educational parent pull-out

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

27. Combined Newborn Screening Hearing Screening Results: Right EarLeft EarScreen Method  Pass  Pass  ABR Other (Specify)____  Refer  Refer  OAE If not screened, reason:  Technical problem  No equipment  Delayed  Caregiver refused  Baby discharged  Other______

28. 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.

29. 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.

30. 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

31. 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

32. 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

33. 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

34. 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

35. Combined Newborn ScreeningAdvantages • 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

36. Combined Newborn ScreeningAdvantages • 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

37. Combined Newborn ScreeningAdvantages • 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

38. Combined Newborn ScreeningAdvantages • 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

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

40. In Oklahoma……… We know so!

41. Oklahoma Newborn Screening Heaven's Gate

42. Hearing Merged with Metabolic:A Marriage Made in Heaven? 2005 Early Hearing Detection and Intervention Conference Renaissance Atlanta Downtown March 4, 2005 Contact Information Jim Schmaelzle (jims@health.ok.gov) Pam King (pamk@health.ok.gov) Oklahoma State Department of Health 1000 NE 10th Street Oklahoma City, OK 73117-1299 405-271-6617