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Developing a Measure of Key Adult Outcomes in Adults with Developmental Disabilities: Conceptual Model and Item Generation of the REALS (Relationships, Employment, Autonomy, and Life Satisfaction)

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Abstract

Employment, social relationships, and autonomy are priorities to people with intellectual and developmental disabilities (IDDs). However, few validated measures exist to systematically assess these key adult outcomes in this population. This research includes first steps to develop self- and proxy report measures of life outcomes for adults with IDDs—the Relationships, Employment, Autonomy, and Life Satisfaction (REALS). A literature search identified existing adult outcome measures, and comparison of their domains informed initial conceptual model development. External consultants revised the model, and items were generated. Autistic adults (n = 15), adults with other IDDs (n = 7), caregivers of autistic adults (n = 13), and caregivers of adults with other IDDs (n = 10) completed in-depth cognitive interviews to assess comprehension of items and response categories, factors influencing how participants respond to items, and the inclusiveness of the item pool. A final conceptual model was generated with three subdomains (social relationships, employment, and autonomy), including assessment of life satisfaction within each domain. Cognitive interviews revealed that response set restructuring and item-level revisions were needed to capture the complexity of adult life and make the measure more accessible across a range of abilities. This study developed a conceptual model of relationships, work, and autonomy specific to adults with IDDs. Future work will involve collecting data from 800 + self-reporters with IDDs and 800 + caregivers of adults with IDDs to conduct psychometric analyses. Improving measurement in this area is critical to better understanding the needs of adults with IDDs and improving services available to them.

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Acknowledgments

The authors would like to thank the many people who provided input through the process, including: co-investigators Paul Pilkonis and Lan Yu, consultants Catherine Lord, Marsha Mailick, David Mandell, Matthew Siegel, Alison Singer, and Susan White, and the members of the Pittsburgh Adult Autism Research Community Collaborative (PAARCC). We would especially like to express our gratitude the participants in this study for their invaluable feedback and their time.

Funding

This work was supported by the National Institute of Child Health and Human Development (R01 HD 100302) and Autism Speaks (11923), National Center For Advancing Translational Sciences under Award Number KL2TR001856 (Author: KB), and the Supporting Our Scientists program funded by the University of Pittsburgh and Doris Duke Charitable Foundation (2021382-OF).

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Authors and Affiliations

  1. Department of Psychiatry, University of Pittsburgh, Pittsburgh, PA, USA

    Kristen T. MacKenzie, Kelly B. Beck, Shaun M. Eack, Katharine N. Zeglen, Caitlin M. Conner & Carla A. Mazefsky

  2. University of Pittsburgh, School of Social Work, Pittsburgh, PA, USA

    Shaun M. Eack

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  1. Kristen T. MacKenzie
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Contributions

Authors CAM and SME contributed to the conception of the study and CAM, SME, KNZ, and CMC contributed to the development of the conceptual model. Cognitive interviews were completed by KTM. Interview analysis and measure revisions were completed by CAM, SME, KNZ, CMC, and KTM. The first draft of the manuscript was written by KTM and KBB. All authors critically revised the manuscript and read and approved the final manuscript.

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Correspondence to Carla A. Mazefsky.

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MacKenzie, K.T., Beck, K.B., Eack, S.M. et al. Developing a Measure of Key Adult Outcomes in Adults with Developmental Disabilities: Conceptual Model and Item Generation of the REALS (Relationships, Employment, Autonomy, and Life Satisfaction). J Autism Dev Disord (2024). https://doi.org/10.1007/s10803-023-06219-9

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