Clinical Assessment Tools for Dyspnea in People With Intellectual and Developmental Disabilities: A Review of Instruments.

Effective symptom assessment and management are the cornerstone of quality palliative care, yet unique barriers exist for people with intellectual and developmental disabilities (IDD). More recently, there has been growing interest in pain assessment for people with IDD, but other symptoms, such as dyspnea, have not been as readily explored. People with IDD experience death due to respiratory conditions at rates higher than the general population, yet not much is known about dyspnea assessment in this population. Individuals with IDD are often left out of research, including studies that validate clinical assessment tools. Communication differences or cognitive abilities can impact the reliability of self-reports for some people with IDD, making the understanding of clinical assessment tools for this population more important for palliative care clinicians in managing symptoms. Currently, no clinical assessment scales have been validated for use in people with IDD. This article examines 4 commonly used and validated clinical assessment tools for dyspnea and offers recommendations for future research and comprehensive dyspnea assessment in people with IDD.