An Analysis of “Lost To An Analysis of “Lost To Follow-up” InfantsFollow-up” Infants

Les R. Schmeltz, Au.D.Les R. Schmeltz, Au.D.NCHAMNCHAM

Mississippi Bend AEA-IowaMississippi Bend AEA-Iowa

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

birth databirth data

State of IowaState of Iowa Screening & reporting voluntary until Screening & reporting voluntary until

20042004 Grantees required to report to IDPHGrantees required to report to IDPH Some hospitals reported to IDPH Some hospitals reported to IDPH

using computer softwareusing computer software Other hospitals reported to AEAsOther hospitals reported to AEAs A few used data for internal follow-upA few used data for internal follow-up

State of Iowa-2002State of Iowa-2002 37,555 live births37,555 live births 95% of babies screened for hearing loss95% 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 Most data to IDPH only initial

screening resultsscreening results Tracking and follow-up spottyTracking and follow-up spotty

1/1/04 Iowa Mandate1/1/04 Iowa Mandate Requires all babies to be screened for Requires all babies to be screened for

hearing loss prior to discharge from the hearing loss prior to discharge from the newborn nurserynewborn nursery

Requires all screening results be Requires all screening results be reported reported to IDPHto IDPH

Requires all follow-up testing be Requires all follow-up testing be reported reported to IDPHto IDPH

State of IowaState of Iowa Web-based Data Management Web-based Data Management

SystemSystem Implementation pending Implementation pending

Will start in largest hospitalsWill start in largest hospitals All birthing facilities reportingAll birthing facilities reporting

Hospitals reporting on paper data sheetsHospitals reporting on paper data sheets Early Access Coordinators to trackEarly Access Coordinators to track Diagnostic centers report testing resultsDiagnostic centers report testing results

AEA 9AEA 9 9 % of births in Iowa9 % of births in Iowa 5 birthing facilities5 birthing facilities 4 service area offices4 service area offices 3 Early Childhood Audiologists3 Early Childhood Audiologists Diagnostic ABR in one facilityDiagnostic ABR in one facility

GHSGHS 2300 births/year, well baby + NICU2300 births/year, well baby + NICU Paid screeners, OAEPaid screeners, OAE Audiologist on staffAudiologist on staff Reports initial & follow-up data to Reports initial & follow-up data to

AEAAEA Follow and track babies to age 3 monthsFollow and track babies to age 3 months Joint follow and track with AEA >3 mos.Joint follow and track with AEA >3 mos.

MHSMHS 500 births/year, well baby only500 births/year, well baby only Nurses screen, OAENurses screen, OAE Initial screening results to AEAInitial screening results to AEA Follow-up & tracking by AEAFollow-up & tracking by AEA AEA office in town, local audiologistAEA office in town, local audiologist

UHSUHS 400 births/year, well baby only400 births/year, well baby only Nurses screen, OAENurses screen, OAE Initial screening results to AEAInitial screening results to AEA Follow-up & tracking by AEAFollow-up & tracking by AEA AEA office in town, AEA audiologist 1 AEA office in town, AEA audiologist 1

day per weekday per week

JCPHJCPH <100 births/year, well baby only<100 births/year, well baby only Nurses screen, OAENurses screen, OAE Initial screening results to AEAInitial screening results to AEA Follow-up & tracking by AEAFollow-up & tracking by AEA AEA office in town, AEA audiologist 1 AEA office in town, AEA audiologist 1

day per weekday per week

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

AEA AEA Universal screening at 4 hospitals Universal screening at 4 hospitals

since 1998since 1998 Results reported to AEA using Results reported to AEA using

Hi*Track systemHi*Track system AEA sends letters and reports for 3 of 4AEA sends letters and reports for 3 of 4 AEA picks up follow-up at 3 mos. for 4AEA picks up follow-up at 3 mos. for 4thth

Data to IDPHData to IDPH Initial screening data from all hospitals Initial screening data from all hospitals

sent to IDPH using Hi*Track systemsent to IDPH using Hi*Track system Follow-up and tracking information Follow-up and tracking information

updated automaticallyupdated automatically Data sent monthly by emailData sent monthly by email Presently over 25,000 babies in Presently over 25,000 babies in

systemsystem

Tracking ProcessTracking Process Initial results letter to parents/PCPInitial results letter to parents/PCP

GHS generates and provides to parents GHS generates and provides to parents at discharge, sends to PCPat discharge, sends to PCP

Other hospitals inform parents after Other hospitals inform parents after screeningscreening

Letters sent to parents and PCP by AEALetters sent to parents and PCP by AEA Parents also receive Early Childhood Parents also receive Early Childhood

Services brochure with letterServices brochure with letter

Tracking ProcessTracking Process Follow-up LettersFollow-up Letters

At 1 month for out-of-state babies, advising At 1 month for out-of-state babies, advising follow-up in home statefollow-up in home state

At 2 and 3 months for unilateral At 2 and 3 months for unilateral refers/missedrefers/missed

At 2, 3 and 4 months to parents of non-At 2, 3 and 4 months to parents of non-pass babiespass babies

To physician at 2 and 4 months for all non-To physician at 2 and 4 months for all non-pass babiespass babies

Tracking ProcessTracking Process Telephone follow-upTelephone follow-up

At >4 mos. for all non-pass babiesAt >4 mos. for all non-pass babies To all families and PCP for babies To all families and PCP for babies

rescreened and still non-passrescreened and still non-pass As indicated by individual situationAs indicated by individual situation

Tracking ProcessTracking Process Remote Site TestingRemote Site Testing

Community Health Clinic rescreening Community Health Clinic rescreening some babies, faxing resultssome babies, faxing results

Early Head Start starting hearing Early Head Start starting hearing screening programscreening program

Early learning programs require hearing Early learning programs require hearing screenscreen

1999 2000 2001 2002 TotalIowa Births 37549 38250 37610 37555 150964AEA 9 3587 3634 3510 3023 13754Screened 3283 3253 3187 2895 12618Passed 2822 2854 2724 2468 10868Referred 461 399 463 427 1750Pass RS 233 193 250 210 886Refer RS 31 42 42 18 133No RS 196 163 168 197 330Not Screened 304 381 323 128 1136Pass 12 49 72 36 169Refer 3 6 13 4 26No Screen 265 326 231 88 910

Population DemographicsPopulation Demographics

Population Demographics %Population Demographics %1999 2000 2001 2002 Total

Iowa Births 37549 38250 37610 37555 150964AEA 9 3587 3634 3510 3023 13754Screened 92 90 91 96 92Passed 86 88 85 85 86Referred 14 12 15 15 14Pass RS 51 48 54 49 51Refer RS 7 11 9 4 8No RS 42 41 37 46 41Not Screened 8 10 9 4 8Pass 12 13 22 28 17Refer 1 2 4 4 2No Screen 87 86 72 88 80

Population DemographicsPopulation Demographics1999 2000 2001 2002 Total

Screen/RS 304 290 377 268 1239Pass 89 83 85 92 87Refer 11 17 15 8 13<1mo 58 52 61 65 59

2 18 18 14 10 153 8 11 9 7 94 4 7 6 6 65 4 2 3 8 46 5 4 3 2 3

>6 3 6 4 2 4

Population Demographics %Population Demographics %1999 2000 2001 2002 Total

Screen/RS 304 290 377 268 1239Pass 89 83 85 92 87Refer 11 17 15 8 13<1mo 58 52 61 65 59

2 18 18 14 10 153 8 11 9 7 94 4 7 6 6 65 4 2 3 8 46 5 4 3 2 3

>6 3 6 4 2 4

Population DemographicsPopulation Demographics1999 2000 2001 2002 Total

Not Screened/RS 461 489 409 287 1646MC-NR 276 342 241 130 989Out of State 37 54 40 21 152No Concerns 53 32 8 7 100MNFA 34 31 33 22 120Refused, Trans,NI 61 61 87 107 316

Population DemographicsPopulation Demographics1999 2000 2001 2002 Total

Seen later 46 43 15 9 113Normal 30 26 5 1 62Non-Significant 10 6 8 4 28Medically Significant 6 10 2 4 22Educationally Sig. 0 1 0 0 1Age <12 Mos 6 10 4 8 2812-24 Mos. 12 12 8 1 3325-36 Mos. 3 14 3 0 20>36 Mos 24 7 0 0 31

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

No ResponseNo Response No concerns about hearing, but do not No concerns about hearing, but do not

reportreport Language issues with lettersLanguage issues with letters Lack of transportationLack of transportation Family issuesFamily issues Forgot to follow-upForgot to follow-up Inconvenient location or times for testingInconvenient location or times for testing

No ResponseNo Response Cost, or perceived, costCost, or perceived, cost Medical issues (chronic OM, etc)Medical issues (chronic OM, etc) Physician advised against testingPhysician advised against testing No perceived urgency for follow-upNo perceived urgency for follow-up Parents unaware baby could be Parents unaware baby could be

testedtested Baby no longer in homeBaby no longer in home

No ResponseNo Response Don’t understand the importance of Don’t understand the importance of

baby hearing properlybaby hearing properly Intended to make appointment, just Intended to make appointment, just

“never got around to it.”“never got around to it.” Baby had other, more pressing, issuesBaby had other, more pressing, issues Parents mentally or developmentally Parents mentally or developmentally

challengedchallenged

MNFAMNFA Letters returned marked MNFALetters returned marked MNFA Telephone disconnected or unable to Telephone disconnected or unable to

locate phone number (cell phone)locate phone number (cell phone) Physician unable to locate or Physician unable to locate or

unknownunknown

Out-of-stateOut-of-state Mostly Illinois babies born in IowaMostly Illinois babies born in Iowa Initial results letters go to familyInitial results letters go to family Second letter advising follow-up at Second letter advising follow-up at

facilities in the areafacilities in the area Card enclosed to report results back Card enclosed to report results back

to our systemto our system

No ConcernsNo Concerns Baby appears to be responding Baby appears to be responding

appropriately to soundsappropriately to sounds Unclear to parent that mild loss may Unclear to parent that mild loss may

exist even with “good” responsesexist even with “good” responses Family sees what they feel are Family sees what they feel are

normal responsesnormal responses Physician not concerned about lossPhysician not concerned about loss

ReferralsReferrals ““Lost To Follow-up” seen later:Lost To Follow-up” seen later:

Speech delay or distortionSpeech delay or distortion Frequent episodes of OMFrequent episodes of OM Parent concern about responsesParent concern about responses Enrolling in programEnrolling in program Physician concernsPhysician concerns High risk or family historyHigh risk or family history

Lost After DiagnosisLost After Diagnosis Parents skeptical of diagnosis or Parents skeptical of diagnosis or

“shopping” for better news“shopping” for better news Child stuck in “medical process”Child stuck in “medical process” Parents could not accept that child Parents could not accept that child

may have a problemmay have a problem Not convinced early intervention is Not convinced early intervention is

necessary or helpfulnecessary or helpful

Lost After DiagnosisLost After Diagnosis Family issues (divorce, job loss,etc.)Family issues (divorce, job loss,etc.) FinancesFinances

Cost of device recommendedCost of device recommended Perceived cost of servicesPerceived cost of services Cost of participating in programmingCost of participating in programming

Left areaLeft area

What Can We Do?What Can We Do? Immediate, meaningful contact with Immediate, meaningful contact with

familyfamily Rescreen appointments made prior to Rescreen appointments made prior to

hospital dischargehospital discharge Make initial phone contact soon after Make initial phone contact soon after

letters go outletters go out Telephone reminders for appointmentsTelephone reminders for appointments

What Can We Do?What Can We Do? Be more persistent!Be more persistent!

More frequent phone calls & lettersMore frequent phone calls & letters Offer alternative screening sitesOffer alternative screening sites Offer in-home screening services if Offer in-home screening services if

necessarynecessary Involve physician much earlier in the Involve physician much earlier in the

processprocess

What Can We Do?What Can We Do? Appoint a case managerAppoint a case manager

Smaller number of cases allows time for Smaller number of cases allows time for closer follow-up and more frequent closer follow-up and more frequent contactcontact

A consistent point of contact for the A consistent point of contact for the family to access all servicesfamily to access all services

What Can We Do?What Can We Do? Involve other agenciesInvolve other agencies

Community health clinicsCommunity health clinics Visiting or public health nursesVisiting or public health nurses Day care providersDay care providers Early Head StartEarly Head Start Physicians groupsPhysicians groups Social service agenciesSocial service agencies

What Can We Do?What Can We Do? Incentives for follow-upIncentives for follow-up

Baby Sleep CD or cassetteBaby Sleep CD or cassette Baby packet of useful itemsBaby packet of useful items Possible tie-in with other agenciesPossible tie-in with other agencies Classes, language groups, etc.Classes, language groups, etc. Pay family expenses for appointmentPay family expenses for appointment Provide transportation where necessaryProvide transportation where necessary

Your Ideas?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 What can we all learn from each

other?other?