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.
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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.).
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The authors declare they have no conflicts of interest.
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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.
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The co-investigators of ADDIRC are listed in the Appendix.
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Appendix
The ADDIRC is made up of the co-investigators: Matthew Siegel, MD (PI) (Maine Medical Center Research Institute; Tufts University), Craig Erickson, MD (Cincinnati Children’s Hospital; University of Cincinnati), Robin L. Gabriels, PsyD (Children’s Hospital Colorado; University of Colorado), Desmond Kaplan, MD (Sheppard Pratt Health System), Carla A. Mazefsky, PhD (Western Psychiatric Institute and Clinic; University of Pittsburgh), Eric M. Morrow, MD, PhD (Bradley Hospital; Brown University), Giulia Righi, PhD (Bradley Hospital; Brown University), Susan L Santangelo, ScD (Maine Medical Center Research Institute; Tufts University), and Logan Wink, MD (Cincinnati Children’s Hospital; University of Cincinnati). Collaborating investigators and staff: Jill Benevides, BS, Carol Beresford, MD, Carrie Best, MPH, Katie Bowen, LCSW, Briar Dechant, BS, Joanne Dixon, PhD, Tom Flis, BCBA, LCPC, Holly Gastgeb, PhD, Angela Geer, BS, Louis Hagopian, PhD, Benjamin Handen, PhD, BCBA-D, Adam Klever, BS, Martin Lubetsky, MD, Kristen MacKenzie, BS, Zenoa Meservy, MD, John McGonigle, PhD, Kelly McGuire, MD, Faith McNeill, BA, Ernest Pedapati, MD, Christine Peura, BA, Joseph Pierri, MD, Christie Rogers, MS, CCC-SLP, Brad Rossman, MA, Jennifer Ruberg, LISW, Cathleen Small, PhD, Kahsi A. Smith, PhD, Nicole Stuckey, MSN, RN, Barbara Tylenda, PhD, Mary Verdi, MA, Jessica Vezzoli, BS, Deanna Williams, BA, and Diane Williams, PhD, CCC-SLP. We gratefully acknowledge the contributions of the coordinating site advisory group: Donald L. St. Germain, MD and Girard Robinson, MD, and our scientific advisory group: Connie Kasari, PhD., Bryan King, MD, James McCracken, MD, Christopher McDougle, MD, Lawrence Scahill, MSN, PhD, Robert Schultz, PhD and Helen Tager-Flusberg, PhD, the input of the funding organizations and the families and children who participated.
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Mazefsky, C.A., Day, T.N., Siegel, M. et al. Development of the Emotion Dysregulation Inventory: A PROMIS®ing Method for Creating Sensitive and Unbiased Questionnaires for Autism Spectrum Disorder. J Autism Dev Disord 48, 3736–3746 (2018). https://doi.org/10.1007/s10803-016-2907-1
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DOI: https://doi.org/10.1007/s10803-016-2907-1