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03--OBrien_EHDI2005

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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


              CDC/EHDI
JCIH 2000
                2003
Organization and Structure

• JCIH                   • CDC/EDHI
  – Principles             – Goals
  – Benchmarks             – Program Objectives
  – Quality Indicators     – Performance
                             Indicators
    JCIH and CDC/EHDI
• Principle 1                  • Goal 1
   – Screening by 1 mo            – Screening by 1 mo
• Principle 2                  • Goal 2
   – Confirmed by 3 mo            – Confirmed by 3 mo
• Principle 3                  • Goal 3
   – Early Intervention by 6      – Early Intervention by 6
     mo                             mo
   JCIH and CDC/EHDI
• Principle 4                 • Goal 4
   – Progressive and late       – Progressive and late
     onset                        onset
• Principle 5                 • Goal 5
   – Family rights              – Medical home
• Principle 6                 • Goal 6
   – Healthcare and             – State tracking and
     educational protection       surveillance system
     of results
    JCIH and CDC/EHDI
• Principle 7                    • Goal 7
   – Information                   – Comprehensive system
     management and                  to monitor and evaluate
     tracking the impact of          progress toward EHDI
     EHDI programs                   goals and objectives
• Principle 8
   – Provide data for
      • Quality monitoring and
        compliance
      • Fiscal accounting, and
        support reimbursement
      • Mobilizing/maintaining
        community support
        Data Collection
    for Early Intervention

• Principle 3            Goal 3
  – Early Intervention     – Early Intervention
    by 6 mo                  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    1. Percentage of infants
   months of age             before 6 months of
                             age


Program Objectives and Performance
Indicators
                          a.   Number and percentage
3.2 Enrolled prior to 6
                               of infants enrolled
    months of age
                               before 6 months of age
        Database Design
1.   Enrolled prior to 6 months of age
      a. Date of birth
      b. Date of enrollment
           Calculating
        Quality 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 Area
    Kansas
• 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)            9. Document medical
2. Date of enrollment                contraindications
3. Dates of each language        10. Document co-existing
   evaluation or updates (x2)        conditions
4. Document chosen mode of       11. Document medical clearance
   communication                 12. Date of each visits
5. Date of each IFSP                 documented with an unaided
6. State if the outcomes for         audiogram for each child
   each specific IFSP had been   13. Date of each visit
   documented as complete            documented in progress notes
7. Date of ABR                       or report as a hearing aid
8. Date of Hearing Aid Fitting       adjustment include visits with
   (x3)                              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 B1QI1
Table 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 (JOCO)
                                30

                                24
                Age in Months
EI Enrollment




                                18

                                12

                                6

                                0
                                     1     2           3    4

                                               Child
            Enrollment by Child - 2000
                                             2000 Data for All Three Counties
                                30

                                24
                Age in Months
EI Enrollment




                                18

                                12

                                 6

                                 0
                                     1   3   5     7      9       11   13       15   17
                                                          Child
            Enrollment by Child - 2001
                         2001 Data for All Three Counties
                30

                24
Age in Months
EI Enrollment




                18

                12

                6

                0
                     1   2       3      4       5       6   7

                                       Child
         B1QI1 Enrollment by Year
                     Mean Age of Enrollment by Year

         20
              15.75
         15                                           11.86
                                 10.64
Months




         10

          5
              QI=0%              QI=28%           QI=29%
              N=4                N=18             N=7
          0

              1999               2000                 2001

                                  Year
  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

               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
            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
             Table 3 – Example of missing information in charts
                         for Johnson County 1999
Johnson Difference between confirmation            Medical contraindication (MC)
County     ABR date and HAF date                   or
1999                                               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)
Mean Number of Months




                        14
                        12                                  11
                        10
                        8           6.1
                        6
                        4
                                  QI=25%                   QI=0%
                        2
                                  N=4                      N=1
                        0
                                   2000                    2001

                                               Year
         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

				
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