An Analysis of “Lost To Follow-up” Infants Les R. Schmeltz, Au.D. NCHAM Mississippi Bend AEA-Iowa

Lost To Follow-Up Not screened or rescreened by 6 mos. Not screened or rescreened by 6 mos. Rescreened, non-pass, no further data Rescreened, non-pass, no further data Diagnostic evaluation, no further data Diagnostic evaluation, no further data Diagnosis, no early intervention Diagnosis, no early intervention No additional information beyond birth data No additional information beyond birth data

State of Iowa Screening & reporting voluntary until 2004 Screening & reporting voluntary until 2004 Grantees required to report to IDPH Grantees required to report to IDPH Some hospitals reported to IDPH using computer software Some hospitals reported to IDPH using computer software Other hospitals reported to AEAs Other hospitals reported to AEAs A few used data for internal follow-up A few used data for internal follow-up

State of Iowa ,555 live births 37,555 live births 95% of babies screened for hearing loss 95% of babies screened for hearing loss IDPH receiving data on less than 50% IDPH receiving data on less than 50% Most data to IDPH only initial screening results Most data to IDPH only initial screening results Tracking and follow-up spotty Tracking and follow-up spotty

1/1/04 Iowa Mandate Requires all babies to be screened for hearing loss prior to discharge from the newborn nursery Requires all babies to be screened for hearing loss prior to discharge from the newborn nursery Requires all screening results be reported to IDPH Requires all screening results be reported to IDPH Requires all follow-up testing be reported to IDPH Requires all follow-up testing be reported to IDPH

State of Iowa Web-based Data Management System Web-based Data Management System Implementation pending Implementation pending Will start in largest hospitals Will start in largest hospitals All birthing facilities reporting All birthing facilities reporting Hospitals reporting on paper data sheets Hospitals reporting on paper data sheets Early Access Coordinators to track Early Access Coordinators to track Diagnostic centers report testing results Diagnostic centers report testing results

AEA 9 9 % of births in Iowa 9 % of births in Iowa 5 birthing facilities 5 birthing facilities 4 service area offices 4 service area offices 3 Early Childhood Audiologists 3 Early Childhood Audiologists Diagnostic ABR in one facility Diagnostic ABR in one facility

GHS 2300 births/year, well baby + NICU 2300 births/year, well baby + NICU Paid screeners, OAE Paid screeners, OAE Audiologist on staff Audiologist on staff Reports initial & follow-up data to AEA Reports initial & follow-up data to AEA Follow and track babies to age 3 months Follow and track babies to age 3 months Joint follow and track with AEA >3 mos. Joint follow and track with AEA >3 mos.

MHS 500 births/year, well baby only 500 births/year, well baby only Nurses screen, OAE Nurses screen, OAE Initial screening results to AEA Initial screening results to AEA Follow-up & tracking by AEA Follow-up & tracking by AEA AEA office in town, local audiologist AEA office in town, local audiologist

UHS 400 births/year, well baby only 400 births/year, well baby only Nurses screen, OAE Nurses screen, OAE Initial screening results to AEA Initial screening results to AEA Follow-up & tracking by AEA Follow-up & tracking by AEA AEA office in town, AEA audiologist 1 day per week AEA office in town, AEA audiologist 1 day per week

JCPH <100 births/year, well baby only <100 births/year, well baby only Nurses screen, OAE Nurses screen, OAE Initial screening results to AEA Initial screening results to AEA Follow-up & tracking by AEA Follow-up & tracking by AEA AEA office in town, AEA audiologist 1 day per week AEA office in town, AEA audiologist 1 day per week

THS <50 births/year, well baby <50 births/year, well baby Nurses screen, OAE Nurses screen, OAE Initial screen results to IDPH Initial screen results to IDPH Inconsistent reporting to AEA Inconsistent reporting to AEA ? follow-up & tracking on babies ? follow-up & tracking on babies Opening new facility in February Opening new facility in February

AEA Universal screening at 4 hospitals since 1998 Universal screening at 4 hospitals since 1998 Results reported to AEA using Hi*Track system Results reported to AEA using Hi*Track system AEA sends letters and reports for 3 of 4 AEA sends letters and reports for 3 of 4 AEA picks up follow-up at 3 mos. for 4 th AEA picks up follow-up at 3 mos. for 4 th

Data to IDPH Initial screening data from all hospitals sent to IDPH using Hi*Track system Initial screening data from all hospitals sent to IDPH using Hi*Track system Follow-up and tracking information updated automatically Follow-up and tracking information updated automatically Data sent monthly by Data sent monthly by Presently over 25,000 babies in system Presently over 25,000 babies in system

Tracking Process Initial results letter to parents/PCP Initial results letter to parents/PCP GHS generates and provides to parents at discharge, sends to PCP GHS generates and provides to parents at discharge, sends to PCP Other hospitals inform parents after screening Other hospitals inform parents after screening Letters sent to parents and PCP by AEA Letters sent to parents and PCP by AEA Parents also receive Early Childhood Services brochure with letter Parents also receive Early Childhood Services brochure with letter

Tracking Process Follow-up Letters Follow-up Letters At 1 month for out-of-state babies, advising follow-up in home state At 1 month for out-of-state babies, advising follow-up in home state At 2 and 3 months for unilateral refers/missed At 2 and 3 months for unilateral refers/missed At 2, 3 and 4 months to parents of non-pass babies At 2, 3 and 4 months to parents of non-pass babies To physician at 2 and 4 months for all non- pass babies To physician at 2 and 4 months for all non- pass babies

Tracking Process Telephone follow-up Telephone follow-up At >4 mos. for all non-pass babies At >4 mos. for all non-pass babies To all families and PCP for babies rescreened and still non-pass To all families and PCP for babies rescreened and still non-pass As indicated by individual situation As indicated by individual situation

Tracking Process Remote Site Testing Remote Site Testing Community Health Clinic rescreening some babies, faxing results Community Health Clinic rescreening some babies, faxing results Early Head Start starting hearing screening program Early Head Start starting hearing screening program Early learning programs require hearing screen Early learning programs require hearing screen

Population Demographics

Population Demographics %

Population Demographics

Population Demographics %

Population Demographics

“Lost To Follow-Up” Parents contacted, no response Parents contacted, no response Moved, no forwarding address Moved, no forwarding address Out-of-state Out-of-state No concerns No concerns

No Response No concerns about hearing, but do not report No concerns about hearing, but do not report Language issues with letters Language issues with letters Lack of transportation Lack of transportation Family issues Family issues Forgot to follow-up Forgot to follow-up Inconvenient location or times for testing Inconvenient location or times for testing

No Response Cost, or perceived, cost Cost, or perceived, cost Medical issues (chronic OM, etc) Medical issues (chronic OM, etc) Physician advised against testing Physician advised against testing No perceived urgency for follow-up No perceived urgency for follow-up Parents unaware baby could be tested Parents unaware baby could be tested Baby no longer in home Baby no longer in home

No Response Don’t understand the importance of baby hearing properly Don’t understand the importance of baby hearing properly Intended to make appointment, just “never got around to it.” Intended to make appointment, just “never got around to it.” Baby had other, more pressing, issues Baby had other, more pressing, issues Parents mentally or developmentally challenged Parents mentally or developmentally challenged

MNFA Letters returned marked MNFA Letters returned marked MNFA Telephone disconnected or unable to locate phone number (cell phone) Telephone disconnected or unable to locate phone number (cell phone) Physician unable to locate or unknown Physician unable to locate or unknown

Out-of-state Mostly Illinois babies born in Iowa Mostly Illinois babies born in Iowa Initial results letters go to family Initial results letters go to family Second letter advising follow-up at facilities in the area Second letter advising follow-up at facilities in the area Card enclosed to report results back to our system Card enclosed to report results back to our system

No Concerns Baby appears to be responding appropriately to sounds Baby appears to be responding appropriately to sounds Unclear to parent that mild loss may exist even with “good” responses Unclear to parent that mild loss may exist even with “good” responses Family sees what they feel are normal responses Family sees what they feel are normal responses Physician not concerned about loss Physician not concerned about loss

Referrals “Lost To Follow-up” seen later: “Lost To Follow-up” seen later: Speech delay or distortion Speech delay or distortion Frequent episodes of OM Frequent episodes of OM Parent concern about responses Parent concern about responses Enrolling in program Enrolling in program Physician concerns Physician concerns High risk or family history High risk or family history

Lost After Diagnosis Parents skeptical of diagnosis or “shopping” for better news Child stuck in “medical process” Parents could not accept that child may have a problem Not convinced early intervention is necessary or helpful

Lost After Diagnosis Family issues (divorce, job loss,etc.) Finances Cost of device recommended Perceived cost of services Cost of participating in programming Left area

What Can We Do? Immediate, meaningful contact with family Immediate, meaningful contact with family Rescreen appointments made prior to hospital discharge Rescreen appointments made prior to hospital discharge Make initial phone contact soon after letters go out Make initial phone contact soon after letters go out Telephone reminders for appointments Telephone reminders for appointments

What Can We Do? Be more persistent! Be more persistent! More frequent phone calls & letters More frequent phone calls & letters Offer alternative screening sites Offer alternative screening sites Offer in-home screening services if necessary Offer in-home screening services if necessary Involve physician much earlier in the process Involve physician much earlier in the process

What Can We Do? Appoint a case manager Appoint a case manager Smaller number of cases allows time for closer follow-up and more frequent contact Smaller number of cases allows time for closer follow-up and more frequent contact A consistent point of contact for the family to access all services A consistent point of contact for the family to access all services

What Can We Do? Involve other agencies Involve other agencies Community health clinics Community health clinics Visiting or public health nurses Visiting or public health nurses Day care providers Day care providers Early Head Start Early Head Start Physicians groups Physicians groups Social service agencies Social service agencies

What Can We Do? Incentives for follow-up Incentives for follow-up Baby Sleep CD or cassette Baby Sleep CD or cassette Baby packet of useful items Baby packet of useful items Possible tie-in with other agencies Possible tie-in with other agencies Classes, language groups, etc. Classes, language groups, etc. Pay family expenses for appointment Pay family expenses for appointment Provide transportation where necessary Provide transportation where necessary

Your Ideas? What has worked for your program? What has worked for your program? How can we adapt your successes? How can we adapt your successes? What can we all learn from each other? What can we all learn from each other?