Person Ability Scores as an Alternative to Norm-Referenced Scores as Outcome Measures in Studies of Neurodevelopmental Disorders

Author:

Farmer Cristan A.1,Kaat Aaron J.2,Thurm Audrey3,Anselm Irina4,Akshoomoff Natacha5,Bennett Amanda6,Berry Leandra7,Bruchey Aleksandra8,Barshop Bruce A.9,Berry-Kravis Elizabeth10,Bianconi Simona11,Cecil Kim M.12,Davis Robert J.13,Ficicioglu Can14,Porter Forbes D.15,Wainer Allison16,Goin-Kochel Robin P.17,Leonczyk Caroline18,Guthrie Whitney19,Koeberl Dwight20,Love-Nichols Jamie21,Mamak Eva22,Mercimek-Andrews Saadet23,Thomas Rebecca P.24,Spiridigliozzi Gail A.25,Sullivan Nancy26,Sutton Vernon R.27,Udhnani Manisha D.28,Waisbren Susan E.29,Miller Judith S.30

Affiliation:

1. Cristan A. Farmer, National Institute of Mental Health

2. Aaron J. Kaat, Northwestern University

3. Audrey Thurm, National Institute of Mental Health

4. Irina Anselm, Boston Children's Hospital and Harvard University

5. Natacha Akshoomoff, University of California San Diego

6. Amanda Bennett, Children's Hospital of Philadelphia

7. Leandra Berry, Baylor College of Medicine

8. Aleksandra Bruchey, Lumos Pharma, Inc.

9. Bruce A. Barshop, University of California San Diego

10. Elizabeth Berry-Kravis, Rush University

11. Simona Bianconi, Eunice Kennedy Shriver National Institute of Child Health and Human Development

12. Kim M. Cecil, University of Cincinnati

13. Robert J. Davis, Lumos Pharma, Inc.

14. Can Ficicioglu, Children's Hospital of Philadelphia and University of Pennsylvania

15. Forbes D. Porter, Eunice Kennedy Shriver National Institute of Child Health and Human Development

16. Allison Wainer, Rush University

17. Robin P. Goin-Kochel, Baylor College of Medicine

18. Caroline Leonczyk, Rush University

19. Whitney Guthrie, Children's Hospital of Philadelphia

20. Dwight Koeberl, Duke University

21. Jamie Love-Nichols, Boston Children's Hospital and Harvard University

22. Eva Mamak, The Hospital for Sick Children

23. Saadet Mercimek Andrews, University of Toronto, The Hospital for Sick Children, ON

24. Rebecca P. Thomas, Children's Hospital of Philadelphia

25. Gail A. Spiridigliozzi, Duke University

26. Nancy Sullivan, Boston Children's Hospital and Harvard Medical School

27. Vernon R. Sutton, Baylor College of Medicine

28. Manisha D. Udhnani, Children's Hospital of Philadelphia

29. Susan E. Waisbren, Boston Children's Hospital and Harvard University

30. Judith S. Miller, University of Pennsylvania

Abstract

Abstract Although norm-referenced scores are essential to the identification of disability, they possess several features which affect their sensitivity to change. Norm-referenced scores often decrease over time among people with neurodevelopmental disorders who exhibit slower-than-average increases in ability. Further, the reliability of norm-referenced scores is lower at the tails of the distribution, resulting in floor effects and increased measurement error for people with neurodevelopmental disorders. In contrast, the person ability scores generated during the process of constructing a standardized test with item response theory are designed to assess change. We illustrate these limitations of norm-referenced scores, and relative advantages of ability scores, using data from studies of autism spectrum disorder and creatine transporter deficiency.

Publisher

American Association on Intellectual and Developmental Disabilities (AAIDD)

Subject

Psychiatry and Mental health,Neurology (clinical),Arts and Humanities (miscellaneous),Developmental and Educational Psychology,Neuropsychology and Physiological Psychology,General Medicine,Pediatrics, Perinatology and Child Health

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