Data Collection for Data Collection for Early InterventionEarly Intervention

Data Collection for Data Collection for Early InterventionEarly Intervention

Dawn M. O’Brien, M.Ed. EI/ECSEDawn M. O’Brien, M.Ed. EI/ECSENannette Nicholson, Ph.D. CCC-ANannette Nicholson, Ph.D. CCC-A

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

Recommendations

CDC/EHDI2003

JCIH 2000

Organization and Structure

• JCIH– Principles– Benchmarks– Quality Indicators

• CDC/EDHI– Goals– Program

Objectives – Performance

Indicators

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

• 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

• 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

Data Collectionfor Early Intervention

• Principle 3– Early Intervention

by 6 mo

Goal 3– Early Intervention

by 6 mo

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

1. Enrolled prior to 6 months of age

Program Objectives and Performance Indicators

3.2 Enrolled prior to 6 months of age

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

1. Percentage of infants before 6 months of age

Database Design

1. Enrolled prior to 6 months of agea. Date of birthb. Date of enrollment

CalculatingQuality Indicators

1. Percentage of infants with hearing loss who are enrolled … before 6 months of age

a. # < 6 months/# HL in program

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• Study Design

– Retrospective Chart Review

• Study Sample • Procedure

Demographic AreaKansas

•105 Counties•36 Networks

– Johnson County–Leavenworth County –Wyandotte County

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

• 19 Johnson• 5 Leavenworth• 5 Wyandotte

Procedure

• Design database• Conduct a retrospective chart

review• Analyze information

Database Design

1. Date of birth (x2)2. Date of enrollment3. Dates of each language

evaluation or updates (x2)4. Document chosen mode of

communication 5. Date of each IFSP 6. State if the outcomes for

each specific IFSP had been documented as complete

7. Date of ABR8. Date of Hearing Aid Fitting

(x3)

9. Document medical contraindications

10.Document co-existing conditions

11.Document medical clearance 12.Date of each visits

documented with an unaided audiogram for each child

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

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

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

• Entered data into fields• Determined available data• Calculated quality indicators based

on information available 100% of the time

Available Data for B1QI1Table 1 – Percent of charts with information available by county and

year for Benchmark 1/Quality Indicator 1 (B1QI1) – Enrollment

1999 2000 2001

% (n) % (n) % (n)

Johnson 100% 4 100% 10 100% 5

Leavenworth

NA 0 100% 4 100% 1

Wyandotte NA 0 100% 4 100% 1

Blue – Information available 100% of the time

Enrollment by Child - 1999

1999 Data (J OCO)

0

6

12

18

24

30

1 2 3 4

Child

EI E

nrol

lmen

t

Age

in

Mon

ths

2000 Data for All Three Counties

0

6

12

18

24

30

1 3 5 7 9 11 13 15 17

Child

EI

Enr

ollm

ent

Age

in

Mon

ths

Enrollment by Child - 2000

Enrollment by Child - 2001

2001 Data f or All Three Counties

0

6

12

18

24

30

1 2 3 4 5 6 7

Child

EI

Enr

ollm

ent

Age

in

Mon

ths

Mean Age of Enrollment by Year

15.75

10.6411.86

0

5

10

15

20

1999 2000 2001

Year

Mon

ths

B1QI1 Enrollment by Year

QI=0%N=4

QI=28%N=18

QI=29%N=7

Available Data for B3QI6Table 2 - Percent of charts with information available by county and year for Benchmark 3/Quality Indicator 6(B3QI6) - Amplification fit < 1 month from confirmation

1999 2000 2001

% (n) % (n) % (n)

Johnson 66% 3 57% 7 40% 5

Leavenworth

NA 0 33% 3 0% 1

Wyandotte NA 0 100% 4 100% 1

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

Yellow = missing data – unable to compute QIBlue = 100% available - able to compute QI

B3QI6 Examples of Missing Data

Table 3 – Example of missing information in charts for Johnson County 1999

Johnson

County1999

Difference between confirmation ABR date and HAF date

Medical contraindication (MC)

or Co-existing conditions (CC)

Child 1 Missing HAF date Waardenburg Syndrome (CC)

Child 2 3 months None noted

Child 3 2 weeks None noted

Child 4 No hearing aid/s (Unilateral) None noted

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.

B3QI6 Amplification fit < 1 month from

confirmation

Mean Number of Months by Year (Wyandotte)

6.1

11

0

2

4

6

8

10

12

14

2000 2001

Year

Mea

n N

umber

of

Mon

ths

QI=25%N=4

QI=0%N=1

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

• 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

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

The End