Arizona’s Approach to Loss to Follow-up

1. Arizona’s Approach to Loss to Follow-up Lylis Olsen Christy Taylor Jan Kerrigan Randi Winston

2. Before 2006 • Voluntary screening (>95%) • Voluntary reporting • Inpatient Screening Data (~75%) • Outpatient Screening Data (~50%) • Diagnostics (< 25%) • Early Intervention • Bilateral (100%) • Unilateral (0%)

3. All hospitals screening • Centralized reporting • Consistent data submission • Quality of data • Linking Outpatient to Inpatient screens • Linked databases • Education of medical home • Socio-behavioral issues with parents • Standardized information • Active follow-up process • Safety nets • Community Health Centers • Pediatricians • Early Intervention Programs • Available outpatient screening • Available diagnostic testing • Timely notification • Expedited referral and pre-authorizations • Otitis media management • Adequate training and diagnostic tools

4. All hospitals screening • Centralized reporting • Consistent data submission • Quality of data • Linking Outpatient to Inpatient screens • Linked databases • Active follow-up process • Education of medical home • Socio-behavioral issues with parents • Standardized information • Safety nets • Timely notification • Available outpatient screening • Available diagnostic testing • Expedited referral and pre-authorizations • Otitis media management • Adequate training and diagnostic tools

5. Legislation • Did not mandate screening (no need) • Mandated Reporting • Within one week- Electronically or Fax • All screening, all diagnostic testing • Anyone who screens or tests • Active follow-up at state level • Ongoing technical assistance to hospitals • Education to stakeholders

6. Centralized Tracking • Electronic merging of data each week from HI*Track • Manual data entry for some outpatient screens and diagnostic reports • Case management through automated link with Neometrics the newborn screening system • Dedicated Staff • One program manager • One data manager • One follow-up coordinator

7. Centralized Follow-up • Follows 1-3-6 • Letter to medical home at 6 weeks • Verify information through Neometrics and Medicaid databases • Letter to medical home and family at 16 weeks • Match records with Early Intervention • Letter and phone call to medical home and family at 28 weeks

8. All hospitals screening • Centralized reporting • Consistent data submission • Quality of data • Linking Outpatient to Inpatient screens • Linked databases • Education of medical home • Standardized information • Safety nets • Active follow-up process • Socio-behavioral issues with parents • Available outpatient screening • Available diagnostic testing • Adequate training and diagnostic tools • Expedited referral and pre-authorization • Otitis media management • Timely notification

9. Screening programs • Hospitals • All provide inpatient screening • Most provide outpatient screen • Keep refer rates in appropriate range • Standardize information to parents and medical home • Immunization card • Training of the screeners

10. Diagnosis • Education of medical home • Expedite the referral and preauthorization process • Look for the results of the newborn screen • Know available resources • Audiology • Adequate training and equipment • Monitor hand offs • Prioritize scheduling of infants • Make reporting easy

12. Is It Working? Unknown • Electronic reporting errors cleaned up 88 out of 170 “lost” in one hospital • Required reporting made immediate change from 60% to less than 40% Loss • One hospital had a 9 month average of 8% loss to follow-up Delays • Medical home is paying attention with a more active role • Significant decrease in delays between screening and diagnosis

13. All hospitals screening • Centralized reporting • Consistent data submission • Quality of data • Linking Outpatient to Inpatient screens • Linked databases • Socio-behavioral issues with parents • Safety nets • Education of medical home • Standardized information • Active follow-up process • Otitis media management • Adequate training and diagnostic tools • Available outpatient screening • Available diagnostic testing • Timely notification • Expedited referral and pre-authorizations

14. Arizona Newborn Screening Phone • (602) 364-1409 • (800) 548-8381(outside Maricopa County) Fax • (602) 364-1495 Website http://www.azdhs.gov/phs/owch/newbrnscrn.htm lylisolsen@msn.com taylorc@azdhs.gov rlwinston@aol.com kerrigj@azdhs.gov

15. Thank You!