Finding solutions to Lost to Follow-up on a state level

2005 National EHDI Conference

Atlanta, Georgia

Anne M. Jarrett, MA- CCCA

Follow-up Consultant

Michigan Department of Community Health/

Early Hearing Detection and Intervention Program

What documentation do we need?

Need documentation on…… All Birth Certificates All Hearing Screens All Referral Outcomes

rescreen or DX all Missed, Incomplete, BI and U fails

All Hearing Losses (complete DX) All intervention services All intervention outcomes

…..if not all lost to follow-up

3 Lost to Follow-up statusesNo Test vs. Refuse vs. No Contact

Lost to FU is defined by capability of whoever defining (provider) 1# Not able to be tested

still in NICU ………outside EHDI time frame Other medical issues taking priority……..outside EHDI time frame Died

2# Family refuses (after x# of attempts) Refuse (“flat out” refusal) No reply scheduling (family or physician) No shows

3# Ca not contact with available resources Wrong phone: no phone, disconnected, misinformation Wrong address: no address, moved no forwarding, misinformation Wrong physician No secondary contact (family or physician) HIPAA preventing obtaining further follow-up tracking information

Follow-up Pieces

Multi Source Providers

Birth

Screen

Rescreen

DX

EI

Medical Home

And Family

State

Other Registries

Community Agencies

How many reasons for lost to FU? More importantly: How do you solve?

Provider – 2 slides, 10+ reasons Family – 2 slides, 20+ reasons Medical Home – 2 slides, 10+ reasons Community – 1 slide, 10+ reasons State – 2 slides, 20+ reasons

Many reasons but how do you solve? Slides 7-15

Breakdown (Providers)

Did not give out verbal and written instructions (cultural and literacy) No continuity to referral providers

Referrals not made Referral provider has no knowledge of need for referral service

No capacity for providing FU management No Discharge planer, No follow-up consultant, No consulting

audiologists No designated referral site Refer site is not a “one stop shopping” for rescreen and Dx

Breakdown (Providers)

Protocols are not followed or developed Where referred, appts made, printed verbal information to families

Full contact information not obtained Poor Accessibility

Location – easy to find flexibility of appointment times

Referral but outside of system (ENT, public health)

Breakdown (Family)

Family didn’t remember - didn’t think appt was important Did not know who to contact Literacy or cultural breakdown Family does not want to be found Other medical needs – hearing lower priority Other family needs – hearing lower priority

(Conflicts with family/work/moving): daycare, back to work Not priority at all for family – not important

5th child and family feels unnecessary Know other infants that failed and everything fine and too much hassle

No medical home (not assigned yet) Waiting for referral No financial means – knowledge of where to go for help

Breakdown (Family)

Housing problems Phone Services – paying bills No transportation Adoption, foster-care Migrant, homeless, non-US/state citizen Postpartum depression Hassle of completing appts (multi-appointments) New living situation: married (new name changes), domestic violence,

adolescent pregnancy, maternal death

Breakdown (Medical Home)

Communicating with wrong medical home – no updated information given back

Attending verses follow-up Referral outside the system (ENT) or provide service

Not aware of reporting needs Late referral (natural sleep of child, repeat testing) Not part of standard baby well check Not aware of need (never received results or feedback no show)

Not sure where to get the screening information No time to get the information back

Breakdown (Medical Home)

Will not refer, “medically unnecessary” Don’t know where to refer Feel that others are taking care of hearing issues Not a high priority Too busy to understand the national and state system/guidelines

Breakdown (Community)

Not part of standard program questions WIC, MSS/ISS, Public Health Clinics, Adoption Agencies,

Domestic Violence Shelters, Foster Care Culture awareness (Arab Chaldean Council, Native American

Tribes, Migrant Clinics) If screening, not aware to reporting needs Not aware of EHDI program and system

Breakdown (State)

No integration from database (poor collection from other databases) Vital Records (birth, death, adoption) Not integrated to tap into other health services family using

Immunizations, Lead testing, Maternal Support, WIC No resources to help providers

Directories Materials/Literature Tracking paths Helping Counties get organized not just providers

FERPA issues, no release of information No sharing agreements

Breakdown (State)

Not providing enough community development activities Prenatal Make known everyone’s capacity, special issues, and needs from others Help providers develop best practice protocols Community awareness and ability to encourage Feedback on system Professional Organizations:

Physician groups (Chapter Champion), Nurses, ENT, Audiologists, Hospital Administrators, Early Interventionists

Other Programs: WIC, MSS/ISS, Public Health Clinics, Adoption Agencies, Domestic

Violence Shelters, Foster Care Culture awareness (Arab Chaldean Council, Native American Tribes,

Migrant Clinics)

How do you calculate lost to FU?

Make a difference in reporting state data and progress births, screens, outcomes, DX HL, EI services

exclude vs include 1# Not able to be tested 2# Family refuses 3# Cannot contact

When are reports run (monthly calendar or DOB)

Does the number reflect the state effort?, state population?

Data Collection(not just results but referrals)

Reporting: All results timely, accurate and complete results birth, screen, outcome, intervention

Testing Result Did testing occur

If not why, what was done to attempt to test Capacity of testing

Referral Status What was said/given to parents What connections were made

Appt made, where, when Capacity of ensuring FU

Background on Michigan Data

Births – ~130,000 (8th largest birthing state) Screening 92% (~120,000)

Missed & Incomplete (8%, ~10,000) Referred (2.7%, ~3,500) (total referred 13,600)

Outcomes/Diagnostic reported (17% missed, 65% referred) (~3,900 reported back)

Hearing Loss reported ~200 (Part B 250y)

EI Referral = 100% Documentation back from EI ~55%

Michigan’s Strategy

Database development and integration Collection from multi-source providers

Action trees with timeouts and letter generation Letter available by e-mailing jarretta@michigan.gov Letters always being revised based on needs

Provide Web access Child health Integration – (MCIR)

Integration Vital Records and Metabolic Birth Defects, CSHCS,

www.michigan.gov/ehdi

Reporting forms: Obtain on Web Page (not Metabolic and EBC) See other MI presentation Fri 2-3 Room C

Secondary Contact: Obtain on Web Page Directories: Obtain on Web Page Guidelines: Obtain on Web Page Community Development

See other MI presentation (Friday 9-10 Room D)

Excellent collection of articles on Follow-Through related to Early Identification

www.nlm.nih.gov/pubs/cbm/hearing_early_id.html

CONTACT: Yasmina Bouraoui, MPH, Program Coordinator

517/335-9398 bouraouiy@michigan.gov

Follow-Up Consultant Anne Jarrett, MA, CCC-A 517/335-8878 jarretta@michigan.govCommunity Development Consultant Debby Behringer, RN, MSN 517/335-8875 behringerd@michigan.govAudiology Consultant Lorie Lang, MA, CCC-A 517/335-9125 langlo@michigan.govParent Consultant Amy Lester, BA 517/335-8273 lestera@michigan.govData Maintenance Consultant Erin Estrada, BA 517/335-8916 estradae@michigan.govData Analyst Consultant Paul Kramer, BA 517/335-9720 kramerpa@michigan.govGeneral Office Assistance Ebone Thomas 517/335-8955 thomase@michigan.gov

517/335-8884, TTY 517/335-8246, FAX 517-335-8036