1. Data Collection for Early Intervention Dawn M. OBrien, M.Ed. EI/ECSE Nannette Nicholson, Ph.D. CCC-A Judith E. Widen, Ph.D. CCC-A

2. Recommendations JCIH 2000 CDC/EHDI 2003

3. Organization and Structure JCIH –Principles –Benchmarks –Quality Indicators CDC/EDHI –Goals –Program Objectives –Performance Indicators

4. 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

5. 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

6. 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

7. Data Collection for Early Intervention Principle 3 –Early Intervention by 6 mo Goal 3 –Early Intervention by 6 mo

8. Focus Joint Committee on Infant Hearing 2000 Position Statement –Principle 3 – Early Intervention Six Benchmarks Ten Quality Indicators –Principle 8 Data collection

9. Benchmarks and Quality Indicators 1.Enrolled prior to 6 months of age Program Objectives and Performance Indicators 3.2Enrolled 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

10. Database Design 1.Enrolled prior to 6 months of age a.Date of birth b.Date of enrollment

11. Calculating Quality Indicators 1.Percentage of infants with hearing loss who are enrolled … before 6 months of age a.# < 6 months/# HL in program

12. 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?

13. Method Study Design –Retrospective Chart Review Study Sample Procedure

14. Demographic Area Kansas 105 Counties 36 Networks –Johnson County –Leavenworth County –Wyandotte County

15. 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

16. Study Sample 19 Johnson 5 Leavenworth 5 Wyandotte

17. Procedure Design database Conduct a retrospective chart review Analyze information

18. Database Design 1.Date of birth (x2) 2.Date of enrollment 3.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 ABR 8.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

19. Retrospective Chart Review Intake Form Individual Family Service Plans Audiology reports Speech language evaluation reports Speech evaluation test forms Progress notes Anecdotal notes

20. Data Analysis Entered data into fields Determined available data Calculated quality indicators based on information available 100% of the time

21. Available Data for B1QI1 Table 1 – Percent of charts with information available by county and year for Benchmark 1/Quality Indicator 1 (B1QI1) – Enrollment 199920002001 %(n)% % Johnson100%4 10100%5 LeavenworthNA0100%4 1 WyandotteNA0100%4 1 Blue – Information available 100% of the time

22. Enrollment by Child - 1999

23. Enrollment by Child - 2000

24. Enrollment by Child - 2001

25. B1QI1 Enrollment by Year QI=0% N=4 QI=28% N=18 QI=29% N=7

26. Available Data for B3QI6 Table 2 - Percent of charts with information available by county and year for Benchmark 3/Quality Indicator 6(B3QI6) - Amplification fit < 1 month from confirmation 199920002001 %(n)% % Johnson66%357%740%5 LeavenworthNA033%30%1 WyandotteNA0100%4 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 QI Blue = 100% available - able to compute QI

27. B3QI6 Examples of Missing Data Table 3 – Example of missing information in charts for Johnson County 1999 Johnson County 1999 Difference between confirmation ABR date and HAF date Medical contraindication (MC) or Co-existing conditions (CC) Child 1Missing HAF dateWaardenburg Syndrome (CC) Child 23 monthsNone noted Child 32 weeksNone noted Child 4No 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.

28. B3QI6 Amplification fit < 1 month from confirmation QI=25% N=4 QI=0% N=1

29. 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

30. 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

31. 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

32. The End