Longitudinal Study of NC EHDI

ProgramA joint study by the Office of Education Services of the NC Dept. of Health and

Human ServicesAnd

BEGINNINGS For Parents of Children Who Are Deaf or Hard of Hearing, Inc.

Presented by Joni Alberg, Ph.D. and Christene Tashjian, MPA

BEGINNINGS--Raleigh, NC

Faculty Disclosure Information

In the past 12 months, we have not had a significant financial interest or other relationship with the manufacturer(s), the product(s) or provider(s) of the service(s) that will be discussed in our presentation.

This presentation will not include discussion of pharmaceuticals or devices that have not been approved by the FDA, nor will we discuss any unapproved or “off – label” uses of pharmaceuticals or devices.

Study Design TeamJoni Alberg, Ph.D.--Executive Director—BEGINNINGS

Cyndie Bennett, MA—Superintendent—Office of Education Services, NC Dept. of Health & Human Services

Jack Roush, Ph.D., CCC/A, Chair--Director--Division of Speech and Hearing Sciences, UNC-CH School of Medicine

Member, Joint Committee on Infant Hearing

Christene Tashjian, MPA—Assistant Executive Director of Research & Development, BEGINNINGS

Kathryn Wilson, MA, CCC-SLP, Cert-AVT—Director—Resource Support Program, Office of Education Services, NC

Dept. of Health & Human Services

Goals of the NC EHDI Program

All infants are screened for hearing loss prior to discharge from birthing/neonatal facilities, or within one month of birth.

All infants referred from the screening process complete diagnostic audiological evaluation by three months of age.

All infants with diagnosed hearing loss receive appropriate interventions by six months of age, including amplification selection (if appropriate) and early intervention.

Early Intervention Program for Children Who Are Deaf or Hard

of HearingProvide comprehensive, developmental and educational services to children who are deaf, hard of hearing, or deaf/blind, ages birth to 3, and their families with a concentration on language and communication skill development.

Purpose of the Study

Examine efforts to achieve 1-3-6 goals for newborn hearing screening/diagnosis/intervention.

Examine language outcomes of children transitioning from EI to Preschool.

Follow the language development progress of children who have exited EI.

Questions We Set Out to Answer

1. Are we meeting our goals for newborn screening and diagnosis?

2. Are we achieving desired goals for language and communication development in children enrolled in EI?

3. Do children continue to make gains in preschool so that they are “on par” with hearing peers when they enter Kindergarten?

Study Design

•Longitudinal•Statewide in scope•Representative•Pilot Phase

Study Subjects

• BEGINNINGS’ database• Received EI services• Born since newborn screening

implemented• Turning three years old during Pilot

Phase• Parents agree to participate

As of 12/31/03

CHEROKEE MACON

GRAHAM

HAY-WOOD

RUTHER-FORD

BUN-COMBE

YAN-CEYMADISON

MITCHELL

CLEVELAND

LINCOLN

CATAWBABURKE

MECKLEN-

BURG

UNION

CABARRUS

ROWAN

IREDELL

STANLY

DAVID-SON

MONT-GOMERY

RANDOLPH

MOORE

ANSONRICH-MOND

HOKE

CHATHAM

HARNETT

CUMBER-LAND

ROBESON BLADEN

SAMPSON

COLUMBUS

BRUNSWICK

NEWHANOVER

PENDER

ORA

NGE

DURH

AM

PERSON

GRAN

VILL

E

VANC

E

FRANKLIN

WAKE

NASH

JOHNSTON

WAYNE

DUPLIN

GREENE

LENOIR

PITT

JONES

ONSLOW CARTERET

CRAVEN

HYDE

WASH-INGTON

BERTIE

MARTIN

CURRITUCK

NORTH-AMPTON

HALIFAX

EDGE-COMBE

ROCKING-HAM

STOKESSURRY

FORSYTH GUILFORD

DAVIE

ASHE

WATAUGA

ALLE-GHANY

CALDWELL ALEX-ANDER

McDOWELL WILSON

AVERY

CASWELL WARREN

YADKIN

TYRELL DARE

SWAIN JACKSON

POLK

SCOT-LAND

PAMLICO

BEAUFORT

CAMDENGATESHERT-FORD

COUNTIES1 PASQUOTANK2 PERQUIMANS

1CHOW

AN

2

CLAY T

RAN-

SYLVANIA HENDER-

SON

ALAM

ANCE

GASTONLEE

WILKES

BEGINNINGS For Parents of Children Who Are Deaf or Hard of Hearing, Inc.

Location of Longitudinal Study ChildrenAs of December 2005

As of 12/31/05

Methodology

• Design Team developed data collection forms

• BEGINNINGS created parent release forms, FAQs, abstract; translated into Spanish

• BEGINNINGS’ staff, EI staff, CHAC were trained to use the forms

Data Collection

BEGINNINGS’ staff confirm current parental info with EI staff, get family update (if needed)

BEGINNINGS staff call parents, send materials; 3 attempts made

Parents sign ROI, PPF

EI staff complete their portion of DCF

CHACs provide screening/hearing info

Children assigned unique ID number, no names

Data Elements

Family/Child

Hearing EI

Hearing status of parents & siblings

NBS/re-screen tool(s), results

Dates service began/ended

Primary language in home

Etiology of loss Location/frequency of serv.; length of session

Parent(s) job, highest education level

Initial & transition hearing thresholds

Description of services

Other challenges – child

Initial & transition HL type

Level of parental participation in sessions

Avg. # hr/day child uses HI (or signs) at home

Age at 1st HA fitting Other therapies child receives

Communication choice(s)

HA type/CI/FM Private SL/AVT

EI File Review

EI transition language assessment scores

Rosetti, DOCs, PLS-4

Subset of 30-40 children to be given PLS-4 by EI SLPs

PLS - 4

To be administered to all subjects at ages 4, 5, 6

Test results compared with previous year(s) to assess progress

Share results with parents & preschool

Gender

27 female

18 male

Other Challenges

20 None

3 Unknown

8 One Challenge

3 Two Challenges

10 Three or More Challenges

Preliminary Findings 45 subjects Located in 29/100 counties

Hearing Status of Parents

42 Hearing

3 Deaf or Hard of Hearing

Language in Home

39 English

5 Spanish

1 ASL

Siblings

7 None

6 Yes, with hearing loss

31 Yes, with no hearing loss

(1 Incomplete data)

Other Therapies

23 None

24 One or more

9 One only

10 Two therapies

11 Three therapies

12 Four therapies

1 Six therapies

1 Seven therapies

Screening

Tools Location Results

AABR 18 NICU 11 Refer-both 21

OAE 4 WBN 17 Pass-both 3

2 – Step 4 Other/Unknown 3 Refer-one 5

Unknown 5 Direct Refer 2

Rescreen

Tools Location Results

AABR 7 Hospital 12

Refer 19

OAE 3 Priv. Aud. 3 Pass 2

2 – Step 3 Health Dept. 1 Direct Refer 1

Unknown 2 Other 6

Diagnostic Tools

ABR 23

OAE 15

Tympanogram 10

VRA 7

ASSR 2

Acoustic Reflex 1

Play Audiometry 2

Unknown 2

Type of Hearing LossAt Diagnosis

Bilateral 27

Unilateral 3

Unknown 3

Right Ear

Sensorineural20

Conductive 3

AN/AD 4

None 1

Unknown 5

Left Ear

Sensorineural21

Conductive 3

AN/AD 4

None 0

Unknown 5

Type of Hearing LossAt Transition

Bilateral 23

Unilateral 2

Unknown 8

Right Ear

Sensorineural16

Conductive 4

Mixed 1

AN/AD 3

Unknown 9

Left Ear

Sensorineural17

Conductive 3

Mixed 1

AN/AD 3

Unknown 9

Age at DiagnosisN = 32

Range: .5 to 31 months

Median Age: 3 months

Mean Age: 7.4 months

17 children diagnosed by 3 months

(53%)

Age at EI Initiation(N=45)

Range: 2 to 34 months

Median: 11 months

Mean: 12.6 months

14 children (31%) were enrolled in EI by 6 months

Hearing InstrumentsN = 42

Hearing Aid Recommended? 39 yes 3 No

Age at HA Fitting:

Range: 1 to 35 months

Median: 12 months

Mean: 14 months

Type of Hearing Instrument

Air Conduction HA 37Bone Conduction HA 1Bone/Air HA 1None 3

Average Daily Home Use of Hearing Instrument (36 children):

Range: 0 to 16 hours Median: 10 hoursMean: 9 hours

Average Daily Use of Sign in Home (4 children) :

Range: 1 to 24 hoursMedian: 7.5 hoursMean: 10 hours

Personal FM System12

Cochlear Implant 11

Communication Choice

1st Choice 2nd Choice

Auditory Oral 26 3

Auditory Verbal 10 3

Cued Speech 0 1

Total Communication 6 2

ASL 2 1

Other Sign 1 1

Language Assessments at Transition

DOCS: Overall (n=16)

DOCS: Language (n=17)

DOCS: Cognition (n=17)

SS: Range 64 – 103 Mean 88

SS: Range 5 – 107 Mean 81

SS: Range 6 – 103 Mean 80

PLS 4: Total Language

(n = 9)

SS: Range 63 – 92 Mean 79

What We Have Learned So Far…

The Pilot Phase of the Study has been critical.

Not all EI screening and diagnostic data are in one place, requiring time-consuming follow-up.

53% of our babies have been diagnosed by 3 months of age!

Collaboration among agencies responsible for screening, diagnosis, intervention and transition is essential to collecting complete data.

Challenges

Conducting a study of this scope with no additional funding.

The number of people involved in data collection.

Management of large amounts of data.

Conducting research with “non-researchers.”

“Scope Creep” – the scope of work keeps expanding.

Numerous sources from which data must be collected.

Next Steps…

Continue Pilot Study until we have 100 children.

Seek additional funding.

Begin testing 4 year olds using the PLS-4.

Thank you!!