OPERATIONALIZING ORAL HEALTH OUTCOME MEASURES TO IMPROVE THE ORAL HEALTH OF PERSONS WITH INTELLECTUAL DISABILITIES

Abstract

Individuals with intellectual disability (ID) face significant challenges in preventing oral diseases. They also lack access to high-quality oral health care in professional settings. To understand the effects of oral conditions on their lives and health, it is necessary to assess their oral health outcome measures. For those with mild ID, who possess adequate linguistic and cognitive abilities, accessibility features should be incorporated in the dental patient reported outcome (dPRO) measures. But many other individuals often lack the linguistic and cognitive ability to self-report through dPRO measures. While self-reported measures are preferable, requiring dPROs in this population would result in a high amount of missing data and the inability to assess interventions for improving their dental health. Thus, there is a need to use proxy-reported outcome (ProxRO) measures, observer reported outcome (ObsRO) measures, and clinician reported outcome (ClinRO) measures among those with ID. This is also a common approach taken by other specialties that work closely with those with ID, where the measures for activities of daily living and adaptive behavior measures use reporting by caregivers. ProxRO measures in dentistry that were created for infants and young children provide a structure for appropriate adaptations and the creation of relevant outcome measures. Including input from the intensely multidisciplinary teams that provide supports for those with ID is key to creating high-quality measures and oral health interventions for those with ID.