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Journal of Autism and Developmental Disorders

, Volume 48, Issue 11, pp 3736–3746 | Cite as

Development of the Emotion Dysregulation Inventory: A PROMIS®ing Method for Creating Sensitive and Unbiased Questionnaires for Autism Spectrum Disorder

  • Carla A. Mazefsky
  • Taylor N. Day
  • Matthew Siegel
  • Susan W. White
  • Lan Yu
  • Paul A. Pilkonis
  • For The Autism and Developmental Disabilities Inpatient Research Collaborative (ADDIRC)
SI: The Autism Inpatient Collection - Studying the Severely Affected

Abstract

The lack of sensitive measures suitable for use across the range of functioning in autism spectrum disorder (ASD) is a barrier to treatment development and monitoring. The Emotion Dysregulation Inventory (EDI) is a caregiver-report questionnaire designed to capture emotional distress and problems with emotion regulation in both minimally verbal and verbal individuals. The first two phases of the EDI’s development are described, including: (1) utilizing methods from the Patient-Reported Outcomes Measurement Information System (PROMIS®) project to develop the item pool and response options; and (2) assessment of the EDI in psychiatric inpatients with ASD. The results suggest that the EDI captures a wide range of emotion dysregulation, is sensitive to change, and is not biased by verbal or intellectual ability.

Keywords

Autism spectrum disorder (ASD) Patient-Reported Outcomes Measurement Information System (PROMIS®) Questionnaire development Emotion regulation Psychiatric inpatients Autism Inpatient Collection 

Notes

Acknowledgments

The authors would like to thank the experts who reviewed drafts of the EDI, including members of the AIC and affiliates at their hospitals, Michael Aman, MD, Shaun Eack, PhD, Nancy Minshew, MD, Donald Oswald, PhD, and Emily Siminoff, MD. The authors are also grateful to the participants who completed the cognitive interviews and the staff at the Center for Excellence in Autism Research (CeFAR, PI Minshew) who made it possible.

Author Contributions

CM conceived of the study, developed the EDI, designed and participated in data collection, performed the analyses, and drafted the manuscript; TD coordinated the study, and participated in data collection, and manuscript revision; MS participated in the design of the study, interpretation, and manuscript revision; SW participated in the design of the study, interpretation, and manuscript revision; LY participated in the design of the study and reviewed the statistical analysis and manuscript; PP participated in the design of the study and revision of the manuscript. All authors read and approved the final manuscript.

Funding

The development of the EDI was initially supported by the INSAR Ritvo-Slifka Award for Innovation in Autism Research (to C.M.) and is currently supported by a grant from the National Institute of Child Health and Human Development (NICHD; R01HD079512 to C.M.). Dr. Mazefsky also received support from NICHD grant K23HD060601 during the early development of the EDI. The Autism Inpatient Collection (AIC) phenotypic database and biorepository is supported by a grant from the Simons Foundation Autism Research Initiative and the Nancy Lurie Marks Family Foundation (SFARI #296318 to M.S.).

Compliance with Ethical Standards

Conflict of Interest

The authors declare they have no conflicts of interest.

Ethical Approval

All procedures performed involving human participants were in accordance with the ethical standards of the institutional research committees where the data was collected and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Informed consent was obtained from all individual participants included in this study.

References

  1. Aldao, A., Nolen-Hoeksema, S., & Schweizer, S. (2010). Emotion-regulation strategies across psychopathology: A meta-analytic review. Clinical Psychology Review, 30, 217–237.CrossRefGoogle Scholar
  2. Alwin, D. F., & Krosknick, J. A. (1991). The reliability of survey attitude measurement: The influence of question and respondent attributes. Sociological Methods Research, 20(1), 139–181.CrossRefGoogle Scholar
  3. American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders, 5th edition: DSM-5. Washington, DC: American Psychiatric Association.CrossRefGoogle Scholar
  4. Arnold, L. E., Vitiello, B., McDougle, C., Scahill, L., Shah, B., Gonzalez, N. M., & Cronin, P. (2003). Parent-defined target symptoms respond to risperidone in RUPP autism study: Customer approach to clinical trials. Journal of the American Academy of Child & Adolescent Psychiatry, 42, 1443–1450.CrossRefGoogle Scholar
  5. Bearss, K., Taylor, C. A., Aman, M. G., Whittemore, R., Lecavalier, L., Miller, J., & Scahill, L. (2015). Using qualitative methods to guide scale development for anxiety in youth with autism spectrum disorder. Autism. doi: 10.1177/1362361315601012.CrossRefPubMedGoogle Scholar
  6. Cella, D., Riley, W., Stone, A., Rothrock, N., Reeve, B., Yount, S., & Cook, K. (2010). The patient-reported outcomes measurement information system (PROMIS®) developed and tested its first wave of adult self-reported health outcome item banks: 2005–2008. Journal of Clinical Epidemiology, 63, 1179–1194.CrossRefGoogle Scholar
  7. Cella, D., Yount, S., Rothrock, N., Gershon, R., Cook, K., Reeve, B., & Rose, M. (2007). The patient-reported outcomes measurement information system (PROMIS®): Progress of an NIH Roadmap cooperative group during its first two years. Medical Care ,45 (5 Suppl 1), S3–S11.CrossRefGoogle Scholar
  8. Christensen, D. L., Baio, J., Braun, K. V. N., Bilder, D., Charles, J., Constantino, J. N., et al. (2016). Prevalence and characteristics of autism spectrum disorder among children aged 8 years—Autism and developmental disabilities monitoring network, 11 sites, United States, 2012. MMWR Surveillance Summaries, 65(3), 1–23. doi: 10.15585/mmwr.ss6503a1.CrossRefGoogle Scholar
  9. Croen, L. A., Najjar, D. V., Ray, G. T., Lotspeich, L., & Bernal, P. (2006). A comparison of health care utilization and costs of children with and without autism spectrum disorders in a large group-model health plan. Pediatrics, 118(4), e1203–e1211.CrossRefGoogle Scholar
  10. Daniels, A. M., Rosenberg, R. E., Anderson, C., Law, J. K., Marvin, A. R., & Law, P. A. (2012). Verification of parent-report of child autism spectrum disorder diagnosis to a web-based autism registry. Journal of Autism and Developmental Disorders, 42, 257–265.CrossRefGoogle Scholar
  11. DeWalt, D. A., Rothrock, N., Yount, S., & Stone, A. A. (2007). Evaluation of item candidates: The PROMIS qualitative item review. Medical Care ,45(5 Suppl 1), S12–S21.CrossRefGoogle Scholar
  12. Farchione, T. J., Fairholme, C. P., Ellard, K. K., Boisseau, C. L., Thompson-Hollands, J., Carl, J. R., & Barlow, D. H. (2012). Unified protocol for transdiagnostic treatment of emotional disorders: A randomized controlled trial. Behavior Therapy, 43, 666–678.CrossRefGoogle Scholar
  13. Hamleton, R. (1991). Fundamentals of item response theory. In F. Lord (Ed.), Applications of item response theory to practical testing problems. New Jersey: Lawrence Erlbaum.Google Scholar
  14. IBM. (2015). SPSS statistics for windows: Version 23. Armonk, NY: IBM Corporation.Google Scholar
  15. Irwin, D. E., Varni, J. W., Yeatts, K., & DeWalt, D. A. (2009). Cognitive interviewing methodology in the development of a pediatric item bank: A patient reported outcomes measurement information system (PROMIS) study. Health and Quality of Life Outcomes ,7(3). doi: 10.1186/1477-7525-7-3.CrossRefGoogle Scholar
  16. Kerns, C. M., Kendall, P. C., Berry, L., Souders, M. C., Franklin, M. E., Schultz, R. T., & Herrington, J. (2014). Traditional and atypical presentations of anxiety in youth with autism spectrum disorder. Journal of Autism and Developmental Disorders, 44, 2851–2861.CrossRefGoogle Scholar
  17. Lartseva, A., Dijkstra, T., & Buitelaar, J. K. (2015). Emotional language processing in autism spectrum disorders: A systematic review. Frontiers in Human Neuroscience, 8, 1–24.CrossRefGoogle Scholar
  18. Leyfer, O. T., Folstein, S. E., Bacalman, S., Davis, N. O., Dinh, E., Morgan, J., et al. (2006). Comorbid psychiatric disorders in children with autism: Interview development and rates of disorders. Journal of Autism and Developmental Disorders, 36, 849–861.CrossRefGoogle Scholar
  19. Lord, C., Rutter, M., DiLavore, P. C., Risi, S., Gotham, K., & Bishop, S. (2012). Autism diagnostic observation schedule: ADOS-2. Torrance, CA: Western Psychological Services.Google Scholar
  20. Magnuson, K. M., & Constantino, J. N. (2011). Characterization of depression in children with autism spectrum disorders. Journal of Developmental and Behavioral Pediatrics, 32, 332–340.CrossRefGoogle Scholar
  21. March, J. S. (1997). Manual for the multidimensional anxiety scale for children (MASC). Toronto, ON: Multi-Health Systems.Google Scholar
  22. Mazefsky, C. A. (2015). Emotion regulation and emotional distress in autism spectrum disorder: Foundations and considerations for future research. Journal of Autism and Developmental Disorders, 45, 3405–3408.CrossRefGoogle Scholar
  23. McEvoy, P. M., Nathan, P., & Norton, P. J. (2009). Efficacy of transdiagnostic treatments: A review of published outcome studies and future research directions. Journal of Cognitive Psychotherapy, 23(1), 20–33.CrossRefGoogle Scholar
  24. NIMH Research Domain Criteria (RDoC) (2013). Retrieved from http://www.nimh.nih.gov/research-funding/rdoc/index.shtml.
  25. Pilkonis, P. A., Choi, S. W., Reise, S. P., Stover, A. M., Riley, W. T., & Cella, D. (2011). Item banks for measuring emotional distress from the patient-reported outcomes measurement information system (PROMIS®): Depression, anxiety, and anger. Assessment, 18, 263–283.CrossRefGoogle Scholar
  26. PROMIS® Validity Standards Committee on behalf of the PROMIS® Network. (2012). PROMIS® instrument development and psychometric evaluation scientific standards. 1–72. Retrieved from http://www.nihpromis.org/science/methodology?AspxAutoDetectCookieSupport=1.
  27. Quill, K. A. (1995). Introduction. In K. A. Quill (Ed.), Teaching children with autism: Strategies to enhance communication and socialization (pp. 1–32). New York: Delmar.Google Scholar
  28. Roid, G. H., Miller, L. J., Pomplun, M., & Koch, C. (2013). Leiter international performance scale, third edition: Leiter-3. Wood Dale, IL: Stoelting Co.Google Scholar
  29. Rutter, M., Bailey, A., & Lord, C. (2003). The social communication questionnaire: Manual. Torrance, CA: Western Psychological Services.Google Scholar
  30. Salazar, F., Baird, G., Chandler, S., Tseng, E., O’Sullivan, T., Howlin, P., & Simonoff, E. (2015). Co-occurring psychiatric disorders in preschool and elementary school-aged children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 45, 2283–2294.CrossRefGoogle Scholar
  31. Samson, A. C., Huber, O., & Gross, J. J. (2012). Emotion regulation in Asperger’s syndrome and high-functioning autism. Emotion, 12, 659.CrossRefGoogle Scholar
  32. Siegel, M., & Gabriels, R. L. (2014). Psychiatric hospital treatment of children with autism and serious behavioral disturbance. Child and Adolescent Psychiatric Clinics of North America, 23(1), 125–142.CrossRefGoogle Scholar
  33. Siegel, M., Milligan, B., Chemelski, B., Payne, D., Ellsworth, B., Harmon, J., & Smith, K. A. (2014). Specialized inpatient psychiatry for serious behavioral disturbance in autism and intellectual disability. Journal of Autism and Developmental Disorders, 44, 3026–3032.CrossRefGoogle Scholar
  34. Siegel, M., Smith, K.A., Mazefsky, C., Gabriels, R. L., Erickson, C., Kaplan, D., & Santangelo, S. L. for the Autism and Developmental Disorders Inpatient Research Collaborative (ADDIRC). (2015). The autism inpatient collection: Methods and preliminary sample description. Molecular Autism, 6, 61–71.CrossRefGoogle Scholar
  35. Tager-Flusberg, H., & Kasari, C. (2013). Minimally verbal school—aged children with autism spectrum disorder: The neglected end of the spectrum. Autism Research, 6, 468–478.CrossRefGoogle Scholar
  36. Watson, D., & Clark, L. A. (1992). Affects separable and inseparable: On the hierarchical arrangement of the negative affects. Journal of Personality and Social Psychology, 62, 489–505.CrossRefGoogle Scholar
  37. White, S. W., Elias, R., Salinas, C., Capriola, N., Conner, C. M., Asselin, S., et al. (2016). Students with autism spectrum disorder in college: Results from a preliminary mixed methods needs analysis. Research in Developmental Disabilities. doi: 10.1016/j.ridd.2016.05.010. .CrossRefPubMedPubMedCentralGoogle Scholar
  38. White, S. W., Lerner, M. D., McLeod, B. D., Wood, J. J., Ginsburg, G. S., Kerns, C., & Compton, S. (2015). Anxiety in youth with and without autism spectrum disorder: Examination of factorial equivalence. Behavior Therapy, 46, 40–53.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2016

Authors and Affiliations

  • Carla A. Mazefsky
    • 1
  • Taylor N. Day
    • 1
    • 4
  • Matthew Siegel
    • 2
  • Susan W. White
    • 3
  • Lan Yu
    • 1
  • Paul A. Pilkonis
    • 1
  • For The Autism and Developmental Disabilities Inpatient Research Collaborative (ADDIRC)
  1. 1.Department of PsychiatryUniversity of Pittsburgh School of MedicinePittsburghUSA
  2. 2.Department of PsychiatryMaine Medical Center Research InstituteScarboroughUSA
  3. 3.Department of PsychologyVirginia TechBlacksburgUSA
  4. 4.Department of PsychologyFlorida State UniversityTallahasseeUSA

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