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Data Collection for Early Intervention. Dawn M. O’Brien, M.Ed. EI/ECSE Nannette Nicholson, Ph.D. CCC-A Judith E. Widen, Ph.D. CCC-A. Recommendations. JCIH Principles Benchmarks Quality Indicators. CDC/EDHI Goals Program Objectives Performance Indicators. Organization and Structure.

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data collection for early intervention

Data Collection for Early Intervention

Dawn M. O’Brien, M.Ed. EI/ECSE

Nannette Nicholson, Ph.D. CCC-A

Judith E. Widen, Ph.D. CCC-A

organization and structure
JCIH

Principles

Benchmarks

Quality Indicators

CDC/EDHI

Goals

Program Objectives

Performance Indicators

Organization and Structure
jcih and cdc ehdi
Principle 1

Screening by 1 mo

Principle 2

Confirmed by 3 mo

Principle 3

Early Intervention by 6 mo

Goal 1

Screening by 1 mo

Goal 2

Confirmed by 3 mo

Goal 3

Early Intervention by 6 mo

JCIH and CDC/EHDI
jcih and cdc ehdi5
Principle 4

Progressive and late onset

Principle 5

Family rights

Principle 6

Healthcare and educational protection of results

Goal 4

Progressive and late onset

Goal 5

Medical home

Goal 6

State tracking and surveillance system

JCIH and CDC/EHDI
jcih and cdc ehdi6
Principle 7

Information management and tracking the impact of EHDI programs

Principle 8

Provide data for

Quality monitoring and compliance

Fiscal accounting, and support reimbursement

Mobilizing/maintaining community support

Goal 7

Comprehensive system to monitor and evaluate progress toward EHDI goals and objectives

JCIH and CDC/EHDI
data collection for early intervention7
Principle 3

Early Intervention by 6 mo

Goal 3

Early Intervention by 6 mo

Data Collectionfor Early Intervention
focus
Focus
  • Joint Committee on Infant Hearing 2000 Position Statement
    • Principle 3 – Early Intervention
      • Six Benchmarks
      • Ten Quality Indicators
    • Principle 8
      • Data collection
benchmarks and quality indicators
Enrolled prior to 6 months of age

Percentage of infants before 6 months of age

Benchmarks and Quality Indicators

Program Objectives and Performance Indicators

a. Number and percentage of infants enrolled before 6 months of age

3.2 Enrolled prior to 6 months of age

database design
Database Design
  • Enrolled prior to 6 months of age
      • Date of birth
      • Date of enrollment
calculating quality indicators
CalculatingQuality Indicators
  • Percentage of infants with hearing loss who are enrolled … before 6 months of age
    • # < 6 months/# HL in program
research questions
Research Questions
  • What type of information do we need to collect?
  • Are we collecting the information?
  • If yes, what is the calculated quality indicator?
  • If not, how can we improve the process so we do collect the information?
method
Method
  • Study Design
    • Retrospective Chart Review
  • Study Sample
  • Procedure
demographic area kansas
Demographic AreaKansas
  • 105 Counties
  • 36 Networks
    • Johnson County
    • Leavenworth County
    • Wyandotte County
inclusion criteria
Inclusion Criteria
  • Had been enrolled in EI Birth to three in 1 of 3 counties
  • Born after July 1, 1999
  • Hearing loss greater than 20 HL dB bilaterally
  • Exited EI program
study sample
Study Sample
  • 19 Johnson
  • 5 Leavenworth
  • 5 Wyandotte
procedure
Procedure
  • Design database
  • Conduct a retrospective chart review
  • Analyze information
database design18
Date of birth (x2)

Date of enrollment

Dates of each language evaluation or updates (x2)

Document chosen mode of communication

Date of each IFSP

State if the outcomes for each specific IFSP had been documented as complete

Date of ABR

Date of Hearing Aid Fitting (x3)

Document medical contraindications

Document co-existing conditions

Document medical clearance

Date of each visits documented with an unaided audiogram for each child

Date of each visit documented in progress notes or report as a hearing aid adjustment include visits with aided audiograms

Count the number of amplification follow-up visits for each child up to one year post hearing aid fitting

Database Design
retrospective chart review
Retrospective Chart Review
  • Intake Form
  • Individual Family Service Plans
  • Audiology reports
  • Speech language evaluation reports
  • Speech evaluation test forms
  • Progress notes
  • Anecdotal notes
data analysis
Data Analysis
  • Entered data into fields
  • Determined available data
  • Calculated quality indicators based on information available 100% of the time
available data for b1qi1
Available Data for B1QI1

Blue – Information available 100% of the time

b1qi1 enrollment by year
B1QI1 Enrollment by Year

QI=0%

N=4

QI=28%

N=18

QI=29%

N=7

available data for b3qi6
Available Data for B3QI6

Yellow = missing data – unable to compute QI

Blue = 100% available - able to compute QI

*Excluded - Johnson 1 chart (1999),3 charts (2000); Leavenworth excluded 1 child (2000): children not fit with hearing aids

b3qi6 examples of missing data
B3QI6 Examples of Missing Data

MC – prevents fitting of hearing aids due to infants health/chart must be excluded from calculation of QI.

CC – co-existing condition – a risk factor for hearing loss or a condition associated with hearing loss. Does not interfere with the fitting of hearing aids.

answering the research questions
Answering the Research Questions
  • What type of information do we need to collect?
    • EI agencies need to know what to collect
    • There are not many data points (i.e. 14 for JCIH)
  • Are we collecting the information?
    • Yes, sporadically or by chance
    • No, not systematically
  • If yes, can we calculate the QI
    • Yes
  • If not, how can we improve the process so we do collect the information?
    • Develop a tool to collect data systematically
conclusion
Conclusion
  • Early intervention agencies’ ability to collect data depends heavily on communication between an early intervention program and an audiologist
  • Standard data collection methods should be established
conclusion31
Conclusion
  • We need to develop a statewide system for collection data
  • Data is not available at the local level
  • If it is not available at the local level it is not going to be available at the state level
  • Outcome from this study – data collection form to pilot