Assessing cognition, mental health and daily functioning in deafblindness: An empirical multicentre study for ICF Core Set development

During the development of the Core Sets for deafblindness, using the World Health Organization’s (WHOs) International Classification of Functioning, Disability, and Health (ICF), the last preparatory study consists of a multisite cross-sectional clinical assessment. Its purpose is to use standardized tests of functioning that have been identified during a systematic literature review, and that have been most frequently used with deafblind individuals. These measures need to be available at no cost, standardized and validated, and not interfere with protected professional acts. Here, we explore the administration of the Mini-Mental State Exam (MMSE), the Lawton-Brody Instrumental Activities of Daily Living Scale, and the Center for Epidemiological Studies Depression Scale for this purpose. Participants were 29 deafblind adults (14 men, 15 women), ranging in age from 20 to 74 ( M = 47.29, SD = 16.31), with a wide range of severity and diagnostic criteria, and from 15 countries distributed across the six WHO regions. They were invited to a structured online clinical assessment based on the ICF Check List of assessment categories, in addition to the administration of the three identified standardized measures. Participants demonstrated varying levels of independence in daily tasks, with the highest independence in managing laundry and medications and greater dependency in financial management and transportation. Nearly half (48%) showed signs of clinical depression. MMSE completion rates were low ( n = 6), with significant non-responses in visually demanding items; among those who completed it, 67% scored within the normal range. A positive correlation between cognitive status and functional independence was found. These findings underscore the heterogeneity of deafblind individuals. None of these most frequently used measures were designed to be administered to individuals living with combined vision and hearing difficulties, underscoring the importance of tailored assessment tools and interventions to support this population.