Background: Collecting self-reported health and quality of life (QoL) outcomes is increasingly considered best practice, but people with intellectual and developmental disabilities (IDD) are often excluded from patient-reported outcome measures.Objective: This article provides a literature-informed overview of the state of the field of self-reporting of physical health and QoL in research with adults with IDD.Approach: We first identified and synthesized definitions of key constructs related to the self-reporting of health. Next, we summarize literature on existing and emerging practices focused on health and QoL assessment, discussing the frequent and sometimes overly broad use of proxy-respondents in the IDD field. We then highlight emerging directions focused on cognitive accessibility and universal design. Finally, we provide conclusions and recommendations for the field.Conclusions: Informed by the literature, we provide action steps to guide the field in considering how to incorporate self-reporting of health outcomes by people with IDD in research, policy, and practice.
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