ADEPP DX Partner Data

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These are results of the Community Based Diagnostic Partnerships, a core component of the Autism Diagnosis Education Pilot Project. ADEPP is administered by the Ohio Chapter, American Academy of Pediatrics thanks to a grant from the Ohio Department of Health.

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ADEPP DX Partner Data

  1. 1. <ul><li>Four of the five counties are now underway </li></ul><ul><li>Fifth county is re-grouping </li></ul><ul><li>What do we know about the children, families and professionals who have been through the process? </li></ul><ul><ul><li>Results from the enhanced evaluation </li></ul></ul><ul><ul><ul><li>Psychoeducational tools, medical eval & diagnosis </li></ul></ul></ul><ul><ul><li>Perceptions of families </li></ul></ul><ul><ul><ul><li>Post-evaluation surveys </li></ul></ul></ul><ul><ul><li>Perceptions of the diagnostic partners </li></ul></ul><ul><ul><ul><li>Time, usefulness of tools, confidence in diagnosis </li></ul></ul></ul><ul><li>We are not a research study: Some data holes! </li></ul>
  2. 2. Number of children evaluated 23 Gender 15 M 8 F Chronological age Range 17-91 months Under 36 months 10 37-48 months 6 49-60 months 5 > 60 months 2
  3. 3. Diagnoses Number % Autism 6 26% PDD-NOS 3 13% Aspergers 1 4% TOTAL ASD 10 43% Language Delay/Disorder 6 26% Language + Behavior 3 13% Global Delay 3 13% No Clinical Dx 1 4%
  4. 4. Diagnosis x Age Age ASD Other Under 36 months 5 5 37-48 months 1 5 49-60 months 3 2 > 60 months 1 1
  5. 5. <ul><li>RBI priorities </li></ul><ul><ul><li>Toileting and dressing </li></ul></ul><ul><ul><li>Feeding/mealtime </li></ul></ul><ul><ul><li>Playtime: entertaining self </li></ul></ul><ul><li>FQOL: Not as “sensitive” as RBI </li></ul><ul><ul><li>Only 6 families scored any item as “Dissatisfied” </li></ul></ul><ul><ul><li>Outside family support, free time, medical/dental care </li></ul></ul>
  6. 6. <ul><li>Two surveys: </li></ul><ul><ul><li>Family-Centered Practices Scale following the psychoeducational evaluation </li></ul></ul><ul><ul><li>Satisfaction Survey following the medical evaluation/diagnosis </li></ul></ul><ul><li>Responses from 17 of the 23 families </li></ul>
  7. 7. *Adapted with permission from Family-Centered Practices Scale , Dunst & Trivette, 2004 With one exception, Never Very Little Some of the time Most of the time All of the time Really listened to my concerns/requests 1 2 3 4 5 Treated me with dignity and respect 1 2 3 4 5 Saw us in a positive way 1 2 3 4 5 Were sensitive to our cultural/ethnic background 1 2 3 4 5 Understood our situation 1 2 3 4 5 Listened for our strengths and interests 1 2 3 4 5 Helped me learn more about my child’s development 1 2 3 4 5 Helped me be an active part of the eval 1 2 3 4 5 Recognized the good things I do as parent 1 2 3 4 5 Were flexible and responsive 1 2 3 4 5 Helped me figure out what to do next 1 2 3 4 5
  8. 8. <ul><li>“ I am very confused on why 7 others felt he was on autism spectrum and these 3 people do not see it. All 7 have spent several hours a month with him and they did not spend much time with him.” </li></ul>
  9. 9. How satisfied are you with . . . Not at all Some what Very How the evaluations were explained to you 1 2 3 4 5 How the educational team and the physician listened to you 1 2 3 4 5 How the educational team and the physician made you feel like an equal member of the team 1 2 3 4 5 How their findings were explained to you 1 2 3 4 5 How your questions were answered 1 2 3 4 5 The diagnosis itself (e.g., language delay, autism) 1 2 3 4 5 The recommendations that were shared with you 1 2 3 4 5 Where the evaluation process was completed 1 2 3 4 5 How long it took to complete the evaluation process 1 2 3 4 5 If you had to go through this evaluation process again, would you? 1 2 3 4 5 Would you be willing to recommend the process to a friend? 1 2 3 4 5
  10. 10. Age First Concerned Age When Shared Concern What happened? Age at Dx 12 12 Ped referred to B-3 23 6 24 Ped referred to Dx Team 27 13 20 Ped referred to B-3 28 24 26 Referred to local agency 40 12 12 Ped told me to wait it out 53 21 26 Referred to B-3 56 24 54 No info from parent 68
  11. 11. <ul><li>“ I feel that everything that needed discussed was. Thank you all!!” </li></ul><ul><li>“ I find this to be quite hopeful and helpful to me.” </li></ul><ul><li>“ Everything was extremely satisfactory as far as personnel, time and location. We’re very thankful.” </li></ul>
  12. 12. <ul><li>Psychoeducational Partners (18/23 surveys) </li></ul><ul><ul><li>Evaluation typically took 2-2.5 hours </li></ul></ul><ul><ul><li>Standardized tool, RBI and ADOS seen as very helpful for both diagnosis and intervention recommendations </li></ul></ul><ul><ul><li>FQOL not helpful </li></ul></ul><ul><ul><li>VERY confident in their results (5 on 5-pt scale) </li></ul></ul><ul><li>MD Partners (20/23 surveys) </li></ul><ul><ul><li>Length of evaluation depended on setting (1-3 hrs) </li></ul></ul><ul><ul><li>Used results of tools (except FQOL) plus history plus DSM-IV </li></ul></ul><ul><ul><li>VERY confident in their results almost all the time (18/20) – in two cases, scheduled child for further medical evaluation and follow-up appointment </li></ul></ul>
  13. 13. <ul><li>Regarding the RBI: </li></ul><ul><ul><li>Seen as valuable as the ADOS, but for different reasons </li></ul></ul><ul><ul><li>“ It’s so personal and so vivid.” </li></ul></ul><ul><ul><li>“ I’m not going into the ADOS blind.” </li></ul></ul><ul><ul><li>“ How else would you know that the child gets up and watches cartoons all day without the RBI?” </li></ul></ul><ul><ul><li>“ The parent is right next me looking at the computer . . . You just can’t believe the look on these families’ faces.” </li></ul></ul><ul><ul><li>“ I read every page before I see the child.” (the MD Partner!!) </li></ul></ul><ul><li>Regarding the ADOS: </li></ul><ul><ul><li>“ The manual is my Bible.” </li></ul></ul><ul><ul><li>“ A lot of stuff to take in . . . A lot of stuff to write down.” </li></ul></ul><ul><ul><li>“ I’m getting more comfortable every time.” </li></ul></ul><ul><ul><li>Advice: “Score it right away!” </li></ul></ul>
  14. 14. <ul><li>“ It’s fun.” </li></ul><ul><li>“ This has been fabulous for families. They don’t have to travel.” </li></ul><ul><li>“ We’re doing better all the time. The first ones were shaky as we were learning the tools.” </li></ul><ul><li>“ We feel that taking the time to be together and DISCUSS is invaluable.” </li></ul><ul><li>“ Families have had a weight lifted off their shoulders.” </li></ul>

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