Pennsylvania Department of Health Out-of-Hospital Pennsylvania Department of Health Out-of-Hospital Birth Newborn Hearing Birth Newborn Hearing Screening Initiative Initiative

National EHDI Conference

Washington, D.C.

February 2 -3, 2006

Arthur A. Florio, DOH EHDI Program AdministratorPatti Matlock, R.N., DOH Nursing Services ConsultantLynn Shay, R.N., BSHS, CPM

Presenter Disclosure Information

 

In the past 12 months, we have not had a significant financial interest or other relationship with the manufacturer(s) of the product(s) or provider(s) of the service(s) that will be discussedin our presentation. This presentation will not include discussion of pharmaceuticals or devices that have not been approved by the FDA or will be discussing unapproved or “off-label” uses of pharmaceuticals or devices.

Pennsylvania FactsPennsylvania Facts

Population 12,406,292Population 12,406,292 44,817 square miles44,817 square miles 67 Counties and 2,567 67 Counties and 2,567

municipalitiesmunicipalities 48 of 67 counties are rural48 of 67 counties are rural 1/3 of the population lives1/3 of the population lives

in a rural areain a rural area

1999 – began demonstration program in 26 birthing hospitals

IHEARR Act passed in November of 2001

Statewide program implemented July 1, 2002

Universal EHDI in all 125 birthing hospitals

~ 142,000 hospital births per year

Approx. 3,400 out-of-hospital births per year

                                                                                                                   

Pennsylvania’s Early Hearing Pennsylvania’s Early Hearing Detection & Intervention ProgramDetection & Intervention Program

2004 Hospital Hearing Screenings2004 Hospital Hearing Screenings

141,465 138,750 137,734

1,470

0

20,000

40,000

60,000

80,000

100,000

120,000

140,000

160,000 Total Births

Newborns Screened

Initially

Newborns Completing

Screening

Newborn Not Passing

Screening

Why undertake a special Why undertake a special effort to screen Out-of-effort to screen Out-of-Hospital Births?Hospital Births?

IHEARR Act specifically mentions the need to screen out-of-hospital births within 30 days.

HRSA UNHSI grant has a requirement to assure broadest possible representation of culturally distinct groups in programs sponsored by MCHB.

Pennsylvania has historically concentrated cultural communities where out-of-hospital birthing is preferred. These communities have continued to grow.

Out-of-Hospital (OOH) BirthsOut-of-Hospital (OOH) Births

Pennsylvania had a total of 3,390 Pennsylvania had a total of 3,390 out-of-hospital births in 2003.out-of-hospital births in 2003.

1,066 OOH births (32%) occurred 1,066 OOH births (32%) occurred at Freestanding Birthing Centers at Freestanding Birthing Centers (FBCs); 120 FBC births were to (FBCs); 120 FBC births were to out-of-state residents. out-of-state residents.

2,324 OOH births (68%) occurred 2,324 OOH births (68%) occurred in residences, midwives’ homes in residences, midwives’ homes or other locations (the majority or other locations (the majority were home births).were home births).

Geographic ConcentrationsGeographic Concentrations

5 of the 15 FBCs accounted for 5 of the 15 FBCs accounted for 64% of the 1066 births that 64% of the 1066 births that took place in FBCs during took place in FBCs during 2003.2003.

5 counties accounted for 62% 5 counties accounted for 62% of all OOH births in the of all OOH births in the residence, physician’s office & residence, physician’s office & other location category (i.e., other location category (i.e., places other than FBCs).places other than FBCs).

2003 OOH Births – Top 20 2003 OOH Births – Top 20 Counties of Occurrence (all Counties of Occurrence (all types included)types included)

1,000 +

Erie

Crawford43

Warren112

McKeanPotter

Tioga Bradford Susquehanna

Wayne

LackawannaWyoming

Luzerne

SullivanLycoming

Columbia

Pike

Monroe

CarbonNorthum

berlandSchuylkill

Dauphin

Delaware78

Lancaster 1047

Berks 215

Lehigh

Bucks

Philadelphia 88

Lebanon 38

Montour

Northampton

Montgomer

y 187

Chester 124

York 38

Snyder

Adams

Perry

Cumberland 86

Union 211

Franklin 99

Centre33

Blair

BedfordSomerse

t

Cambria

Indiana 120

Westmoreland

Clinton

CameronElk

Forest

Venango

Butler Armstrong

Jefferson

Mercer97

Lawrence

Beaver

Allegheny 135

Washington

Greene

Mifflin 104

Fulton

Huntingdon

Clearfield

Clarion

Fayette

100 - 200

50 – 100

40 - 80

Juniata -- 162

2003 OOH Births – Areas of Concentration2003 OOH Births – Areas of Concentration

RedRed – – Areas with concentrated home births (townships/boroughs with at least 5 and as Areas with concentrated home births (townships/boroughs with at least 5 and as many as 104 home births – residence of mother)many as 104 home births – residence of mother)

Colored Dots with surrounding shadingColored Dots with surrounding shading – – Locations of FBCs and the twps./boroughs Locations of FBCs and the twps./boroughs where mothers who gave birth in those FBCs reside. where mothers who gave birth in those FBCs reside.

MIDWIVES DOING OOH BIRTHSMIDWIVES DOING OOH BIRTHS

Certified Nurse Midwife (CNM)Certified Nurse Midwife (CNM)

Certified Professional Midwife (CPM) Certified Professional Midwife (CPM)

Direct Entry Midwife (DEM)Direct Entry Midwife (DEM)

Traditional MidwifeTraditional Midwife

Some RNs and midwife apprentices also Some RNs and midwife apprentices also do newborn hearing screening for OOH do newborn hearing screening for OOH births.births.

Overcoming Barriers in Getting OOH Overcoming Barriers in Getting OOH Birth Hearing Screening Started . . .Birth Hearing Screening Started . . .

Lack of interest among midwivesLack of interest among midwives Midwives not convinced of its importance Midwives not convinced of its importance

– viewed hearing screening as an – viewed hearing screening as an additional unnecessary procedureadditional unnecessary procedure

Patients not interestedPatients not interested Hospitals hesitant to allow hands-on Hospitals hesitant to allow hands-on

in-service training for midwives doing in-service training for midwives doing OOH birthsOOH births

Getting StartedGetting Started . . .. . .

Contact midwives in the counties with the Contact midwives in the counties with the largest concentrations of OOH birthslargest concentrations of OOH births

Contact DOH district office community Contact DOH district office community health nurseshealth nurses

Finding midwives interested in Finding midwives interested in performing newborn hearing screening performing newborn hearing screening

FBCs are a good venue for hands-on FBCs are a good venue for hands-on trainingtraining

Establishing OOH Birth Establishing OOH Birth Screening Networks . . .Screening Networks . . .

Traveling Midwife Traveling Midwife Networks Networks

Freestanding Freestanding Birthing FacilitiesBirthing Facilities

How Machines are PurchasedHow Machines are Purchased

Advisory Committee helped Advisory Committee helped formulate equipment specificationsformulate equipment specifications

Bid Procurement -- bid Bid Procurement -- bid specification is issued and vendors specification is issued and vendors submit bidssubmit bids

The lowest bid that meets all The lowest bid that meets all requirements of the bid requirements of the bid specification gets the salespecification gets the sale

Bid Specification Highlights . . . Bid Specification Highlights . . .

Must be Portable Must be Portable Auditory Brainstem Response (ABR)Auditory Brainstem Response (ABR) Battery-powered (5-hour operating Battery-powered (5-hour operating

capability on charge)capability on charge) Pass/Not-pass result indication Pass/Not-pass result indication Consumables for 500 screenings/unit Consumables for 500 screenings/unit 3-year service agreement & warranty3-year service agreement & warranty Vendor TrainingVendor Training

Communication is ImportantCommunication is Important

Mailing reports Mailing reports and informationand information

Faxes and e-mailFaxes and e-mail

Telephones and Telephones and cell phones cell phones

CURRENT PLACEMENT OF PORTABLE ABR CURRENT PLACEMENT OF PORTABLE ABR SCREENING UNITSSCREENING UNITS

Pennsylvania’s EHDI program has purchased 15 portable ABR unitsPennsylvania’s EHDI program has purchased 15 portable ABR units The units are currently deployed at the above locationsThe units are currently deployed at the above locations Upcoming prospective placement at Pittsburgh FBCUpcoming prospective placement at Pittsburgh FBC Another bid purchase is in process for 5 additional units Another bid purchase is in process for 5 additional units

Preparing for Hearing ScreeningPreparing for Hearing Screening

Quiet environmentQuiet environment Make sure infant is Make sure infant is

tired and fedtired and fed Identify and prepare Identify and prepare

sensor sites sensor sites Connect SensorsConnect Sensors Fit ear-tip on the probeFit ear-tip on the probe Prepare the machinePrepare the machine View results and View results and

record resultsrecord results

Maintaining the NetworksMaintaining the Networks

15 portable ABR screening units in use15 portable ABR screening units in use 6 traveling midwives share 3 machines6 traveling midwives share 3 machines 12 units are at FBCs12 units are at FBCs Maintaining equipment Maintaining equipment

- 5 machines need yearly replacement cables- 5 machines need yearly replacement cables

- knowledge of warranties - knowledge of warranties Budgeting for and ordering supplies Budgeting for and ordering supplies

ReportsReports

L-X

XX

XX

XX

Pennsylvania Department of HealthDivision of Newborn Disease Prevention and IdentificationPO Box #90, Harrisburg PA, 17108-0090

Phone: (717) 783-8143 TTY: (717) 783-6514

Out of Hospital BirthsThis form is for out of hospital births and includes Hearing Screening

BABY’S LAST NAME FIRST

S &

S

90

3L

OT

# W

-01

1 (

Rev. 1

2/0

2)

12

34

56

7DRAW DATE TIME AMPM

CHECK HERE IF BABY IFBABY IS LESSTHAN 24 HRS. OLD

MOTHER’S LAST NAME FIRST

ADDRESS

CITY, STATE, ZIP

PHONE (MOTHER)

MOTHER’S SOCIAL SECURITY NUMBER

HEARING SCREENING: (OUT OF HOSPITAL BIRTHS ONLY)

NAME OF SCREENER: ______________________DATE: __________

R. Ear Pass ____ Refer ____ Not Screened ____ Refused ____L. Ear Pass ____ Refer ____ Passed but High Risk Factor ____

LOCATION OF BIRTH:HOME BIRTHING CENTER

OTHER

____________________________

DRAWN BY

SEXM

F

BIRTHDATE BIRTHTIMEAM

PM

BABY’S MED. REC. NO. BABY’S RACE

WHITE ASIAN

BLACK AM. IND.

PAC. IS. OTHERGESTATION

(WEEKS)

BIRTHWEIGHT

(GRAMS)

BIRTHSINGLE OTHER ____

A B CTRANSFUSED?

SM. VOL

EXCHANGEDATE __________

SPECIMEN

INITIAL

REPEAT

PREV. CARD #

MATERNAL HEPATITIS B STATUS

Hbs Ag POS. NEG. ?FORM SUBMITTED BY

PHONE NUMBER ADDRESS IF OTHER THAN BIRTH FACILITY

MIDWIFE

BABY’S PHYSICIANLAST FIRSTNAME NAME

MOTHER’S MEDICAL ASSISTANCE #

HISPANIC ?

YES NO

1234567SubmitterKeep Top Copy

OOH Birth Filter Paper

Success of ProgramSuccess of Program

Diagnosed 2 newborn infants with Diagnosed 2 newborn infants with hearing losshearing loss

Both infants have amplification Both infants have amplification Awareness among the Lancaster County Awareness among the Lancaster County

about hearing screening and the outcomeabout hearing screening and the outcome More interest among the midwives in More interest among the midwives in

screeningscreening

ChallengesChallenges

Fluctuating birthing volumes Fluctuating birthing volumes

Generating interest among clienteleGenerating interest among clientele

Equipment recallsEquipment recalls

Cooperation among midwives sharing Cooperation among midwives sharing screening unitsscreening units

Submission of data and referralsSubmission of data and referrals

Goals for 2006Goals for 2006

Purchase 5 ABR hearing machinesPurchase 5 ABR hearing machines

Screen 50-60% of OOH birthsScreen 50-60% of OOH births

Provide educational updates for Provide educational updates for midwivesmidwives

Initiate feedback newsletter for midwifesInitiate feedback newsletter for midwifes

Serving special sub-groups of the Serving special sub-groups of the population in Pennsylvaniapopulation in Pennsylvania

The Plain PeopleThe Plain People Agrarian Agrarian

communitiescommunities Rural residentsRural residents Complementary Complementary

healthcare seekershealthcare seekers

Barriers to screening in subgroupsBarriers to screening in subgroups

The Old Order Amish and The Old Order Amish and MennonitesMennonites

Cost of test and subsequent treatmentCost of test and subsequent treatment

Transportation and accessTransportation and access

The Old Order Amish and The Old Order Amish and MennonitesMennonites

Educational levelEducational level Reliance on non-allopathic healthcareReliance on non-allopathic healthcare Community belief systemsCommunity belief systems

Routine preventive care devaluedRoutine preventive care devaluedTechnologyTechnologyAvoid being uniqueAvoid being uniqueAdvice from grandparentsAdvice from grandparentsGovernment aidGovernment aid

Other Plain Groups, Farmers, Rural Other Plain Groups, Farmers, Rural Dwellers and Complementary Dwellers and Complementary

healthcare groupshealthcare groups

CostCost TransportationTransportation Ease of accessibilityEase of accessibility Distrust of government programsDistrust of government programs Distrust of allopathic healthcare/technologyDistrust of allopathic healthcare/technology

Removing the BarriersRemoving the Barriers Personal relationship with the providerPersonal relationship with the provider Patient educationPatient education Free testingFree testing Portable processPortable process Incorporation into routine careIncorporation into routine care Viewing hearing screening as a standard of careViewing hearing screening as a standard of care Relating early treatment to adult productivityRelating early treatment to adult productivity

Cultural Competence:Cultural Competence: The chameleon effectThe chameleon effect

Home visits

“Hitching posts”

Personal relationship

The teachable moment

Informing multiple generations

Net results for outreach screening Net results for outreach screening services:services:

Decreasing disparity in healthcare services Decreasing disparity in healthcare services to population sub-groups (Healthy People to population sub-groups (Healthy People 2010 goal)2010 goal)

Increased screening to children at riskIncreased screening to children at risk Increased awareness of importance of Increased awareness of importance of

prevention, screening and early intervention prevention, screening and early intervention among often marginalized groupsamong often marginalized groups

Screening and Intervention Screening and Intervention LinkedLinked

Screening followed by Screening followed by intervention in all subgroupsintervention in all subgroups

Intervention amenableIntervention amenable

Summary and Lessons LearnedSummary and Lessons Learned

Research is KeyResearch is Key Identify and Overcome BarriersIdentify and Overcome Barriers Recognize Cultural DiversitiesRecognize Cultural Diversities Program Requires Investment of Staff Program Requires Investment of Staff

Time and EffortTime and Effort Develop Relationships Based on TrustDevelop Relationships Based on Trust CommunicationsCommunications