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

2. 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. 3 Loss to Follow Up UnknownLost Delayed 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. 4 Loss to Follow Up UnknownLost Delayed 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. 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. 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. 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. 8 Loss to Follow Up UnknownLost Delayed 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. 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. 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

11. 11

12. 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. 13 Loss to Follow Up UnknownLost Delayed 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. 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!