Universal Newborn Hearing Screening and Intervention Evaluation

Universal Newborn Hearing Screening and Intervention Evaluation

Shanna Shulman, PhDMelanie Besculides, DrPH

Shanna Shulman, PhDMelanie Besculides, DrPH

AcknowledgmentsAcknowledgments

Mathematica team:Anna Katz Charlotte HansonHenry Ireys Keith RathbunLisa Trebino Eileen Curley

Irene Forsman, Federal Project Officer

Karl White, National Center for Hearing Assessment and Management

Program staff

Mathematica team:Anna Katz Charlotte HansonHenry Ireys Keith RathbunLisa Trebino Eileen Curley

Irene Forsman, Federal Project Officer

Karl White, National Center for Hearing Assessment and Management

Program staff

Presentation Road MapPresentation Road Map

Background Methods Overview of findings Barriers and strategies Program implementation themes Future directions Conclusion

Background Methods Overview of findings Barriers and strategies Program implementation themes Future directions Conclusion

Conceptual Framework for the ProgramConceptual Framework for the Program

Newborn

Further Evaluation

Intervention

Newborn

Screening

Audiologic diagnosis by three months

Medical home

Family-to-family support

S

Birth

Early interventionby six months

Speech,language,

social skillsdevelopmenton par with

peers at schoolentry

Intervention Goal

SScreening beforehospital

dischargeor within

one month

Program Evaluation BackgroundProgram Evaluation Background

90% of infants screened for hearing loss

30-50% receive follow-up screening

MPR Evaluation:– Program’s progress in achieving goals– Barriers and strategies for improvement

90% of infants screened for hearing loss

30-50% receive follow-up screening

MPR Evaluation:– Program’s progress in achieving goals– Barriers and strategies for improvement

Evaluation FocusEvaluation Focus

Diagnosis

Early intervention

Medical home

Family-to-family support

Diagnosis

Early intervention

Medical home

Family-to-family support

Evaluation MethodsEvaluation Methods

Literature review

Survey of state and territorial program coordinators

Site visits to 8 state programs (AZ, CA, MA, MN, NE, PA, TN, WY):

– UNHSI staff – Hospital staff – AAP Chapter Champion – Audiologists

Literature review

Survey of state and territorial program coordinators

Site visits to 8 state programs (AZ, CA, MA, MN, NE, PA, TN, WY):

– UNHSI staff – Hospital staff – AAP Chapter Champion – Audiologists

FindingsFindings

Screening is almost universal

Gaps in follow-up remain:

– Diagnostic evaluation by 3 months– Link to early intervention – Link to medical home– Link to family-to-family support

Screening is almost universal

Gaps in follow-up remain:

– Diagnostic evaluation by 3 months– Link to early intervention – Link to medical home– Link to family-to-family support

Barriers to follow-upBarriers to follow-up

Service system capacity

Provider knowledge

Family challenges in obtaining services

Information gaps

Service system capacity

Provider knowledge

Family challenges in obtaining services

Information gaps

System Capacity: What Is LackingSystem Capacity: What Is Lacking

Equipment to perform screenings

Audiologists to perform evaluation

Intervention services focused on infant/toddler hearing

Family-to-family support services

Equipment to perform screenings

Audiologists to perform evaluation

Intervention services focused on infant/toddler hearing

Family-to-family support services

Strategies for Lack of EquipmentStrategies for Lack of Equipment

Seek grants to purchase equipment

Maintain alternate screening opportunities

Seek grants to purchase equipment

Maintain alternate screening opportunities

Rate of Audiologists per 10,000 BirthsRate of Audiologists per 10,000 Births

MT

WY

ID

WA

OR

NV

UT

CA

AZ

ND

SD

NE

CO

NM

TX

OK

KS

AR

LA

MO

IA

MN

WI

IL IN

KY

TN

MS AL GA

FL

SC

NC

VAWV

OH

MI

NY

PA

DE

NJ

CTRI

MA

ME

VT

NH

AK

HI

Fewer than 2 audiologists per 10,000 births

2 – 2.99 audiologists per 10,000 births

More than 4 audiologists per 10,000 births

3 – 3.99 audiologists per 10,000 births

DC

MD

Strategies for Lack of Audiology ServicesStrategies for Lack of Audiology Services

Conduct outreach and training

Work to increase reimbursement (commercial and public)

Conduct outreach and training

Work to increase reimbursement (commercial and public)

Strategies for Lack of EI, Family-to-Family Services

Strategies for Lack of EI, Family-to-Family Services

Implement training, specialized curricula

Tap community resources

Partner with other organizations

Hire regional parent coordinators

Implement training, specialized curricula

Tap community resources

Partner with other organizations

Hire regional parent coordinators

Provider Knowledge: BarriersProvider Knowledge: Barriers

Lack of protocols for standardized screening and presentation of results

Low volume of patients decreases quality of screening, follow-up, and evaluation services

Lack of provider knowledge about UNHSI and key partners

“Wait-and-see” attitude among PCPs

Lack of protocols for standardized screening and presentation of results

Low volume of patients decreases quality of screening, follow-up, and evaluation services

Lack of provider knowledge about UNHSI and key partners

“Wait-and-see” attitude among PCPs

Strategies for Lack of Protocols and Low Patient Volume

Strategies for Lack of Protocols and Low Patient Volume

Provide TA to screening hospitals

Make follow-up appointment before discharge

Concentrate screening in small group

Provide ongoing training, particularly for low-volume areas

Provide TA to screening hospitals

Make follow-up appointment before discharge

Concentrate screening in small group

Provide ongoing training, particularly for low-volume areas

Strategies for Lack of Knowledge, AttitudesStrategies for Lack of Knowledge, Attitudes

Outreach and training

Single point of contact to link families to services

Education, colleague-to-colleague training

Outreach and training

Single point of contact to link families to services

Education, colleague-to-colleague training

Family Barriers to Obtaining ServicesFamily Barriers to Obtaining Services

Pre-authorization requirements, lack of insurance

Need to go to unfamiliar location for evaluation

Lack of transportation to audiologist

Transient living situations and language barriers

Pre-authorization requirements, lack of insurance

Need to go to unfamiliar location for evaluation

Lack of transportation to audiologist

Transient living situations and language barriers

Strategies to Help Families Get ServicesStrategies to Help Families Get Services

Facilitate pre-authorization or enrollment in public assistance programs

Establish relationship with audiology center

Facilitate pre-authorization or enrollment in public assistance programs

Establish relationship with audiology center

Strategies to Help Families Get ServicesStrategies to Help Families Get Services

Partner with existing programs

Develop education materials in other languages

Use translation services

Hire bilingual staff

Partner with existing programs

Develop education materials in other languages

Use translation services

Hire bilingual staff

Information Gaps: BarriersInformation Gaps: Barriers

Poor communication among hospitals, PCPs, audiologists, and program

Data systems not accessible to providers

Privacy laws impede agency sharing

Poor communication among hospitals, PCPs, audiologists, and program

Data systems not accessible to providers

Privacy laws impede agency sharing

Strategies to Improve CommunicationStrategies to Improve Communication

Train hospital staff on importance of relaying complete information

Use existing data sources to complete missing data fields

Use specialized software, metabolic screening cards, or electronic birth certificates to convey results

Train hospital staff on importance of relaying complete information

Use existing data sources to complete missing data fields

Use specialized software, metabolic screening cards, or electronic birth certificates to convey results

Strategies to Improve Use of DataStrategies to Improve Use of Data

Use web-based systems to facilitate real-time transmission of results, contact information, and track follow-up

Establish data-sharing procedures

Secure family permission for data sharing

Use web-based systems to facilitate real-time transmission of results, contact information, and track follow-up

Establish data-sharing procedures

Secure family permission for data sharing

1. Program Implementation Varies by State1. Program Implementation Varies by State

Legislation

Infrastructure

Privacy laws

Legislation

Infrastructure

Privacy laws

2. More Mature Programs Are Farther Along2. More Mature Programs Are Farther Along

Established reporting relationships

Internal data and tracking capabilities

Relationships with early intervention and family-to- family support services

Effective follow-up strategies

Cross-agency communication

Established reporting relationships

Internal data and tracking capabilities

Relationships with early intervention and family-to- family support services

Effective follow-up strategies

Cross-agency communication

3. Program Priorities on the Right Track3. Program Priorities on the Right Track

Improving data and tracking systems

Enhancing provider knowledge

Increasing EI service system capacity

Improving family services

Improving data and tracking systems

Enhancing provider knowledge

Increasing EI service system capacity

Improving family services

4. Infant Hearing Loss Is Low Incidence4. Infant Hearing Loss Is Low Incidence

Volume matters

Providers require ongoing training

Coordinating entity is important

Volume matters

Providers require ongoing training

Coordinating entity is important

Future Program DirectionsFuture Program Directions

Improve data systems to support surveillance and follow-up

Build additional capacity

Develop family-to-family support services

Promote importance of early detection

Improve data systems to support surveillance and follow-up

Build additional capacity

Develop family-to-family support services

Promote importance of early detection

As Things StandAs Things Stand

Programs poised to take action

Model of collaboration in public health

Programs poised to take action

Model of collaboration in public health