Development of the Emotion Dysregulation Inventory: A PROMIS®ing Method for Creating Sensitive and Unbiased Questionnaires for Autism Spectrum Disorder
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.
KeywordsAutism spectrum disorder (ASD) Patient-Reported Outcomes Measurement Information System (PROMIS®) Questionnaire development Emotion regulation Psychiatric inpatients Autism Inpatient Collection
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.
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.
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.
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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