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Arizona’s Approach to Loss to Follow-up

Lylis Olsen Christy Taylor Jan Kerrigan Randi Winston

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Before 2006

Voluntary screening (>95%) Voluntary reporting

• Inpatient Screening Data (~75%)• Outpatient Screening Data (~50%)• Diagnostics (< 25%)• Early Intervention

– Bilateral (100%)– Unilateral (0%)

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DelayedLost

Unknown

Loss to Follow Up

• 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

DelayedLost

Unknown

Loss to Follow Up

• 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

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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

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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

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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

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DelayedLost

Unknown

Loss to Follow Up

• 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

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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

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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

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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-upDelays Medical home is paying attention

with a more active role Significant decrease in delays

between screening and diagnosis

% Loss to Follow-up

0

10

20

30

40

50

60

Nov 2005- Nov 2006

Perc

ent

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DelayedLost

Unknown

Loss to Follow Up

• 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

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

Thank You!