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

1. 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

2. 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. 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

4. Follow-up Pieces Medical Home And Family Community Agencies Multi Source Providers Birth Screen Rescreen DX EI State Other Registries

5. 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

6. 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

7. 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)

8. 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

9. 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

10. 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

11. 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

12. 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

13. 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

14. 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)

15. 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?

16. 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

17. 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%

18. 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,

20. 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

21. CONTACT: • Yasmina Bouraoui, MPH, Program Coordinator • 517/335-9398 bouraouiy@michigan.gov Follow-Up Consultant • Anne Jarrett, MA, CCC-A517/335-8878jarretta@michigan.gov Community Development Consultant • Debby Behringer, RN, MSN517/335-8875behringerd@michigan.gov Audiology Consultant • Lorie Lang, MA, CCC-A517/335-9125langlo@michigan.gov Parent Consultant • Amy Lester, BA517/335-8273lestera@michigan.gov Data Maintenance Consultant • Erin Estrada, BA517/335-8916estradae@michigan.gov Data Analyst Consultant • Paul Kramer, BA517/335-9720kramerpa@michigan.gov General Office Assistance • Ebone Thomas517/335-8955thomase@michigan.gov • 517/335-8884, TTY 517/335-8246, FAX 517-335-8036