The Development of International Classification of Functioning, Disability, and Health Core Set for Deafblindness: A Research Project of International Relevance in Rehabilitation

Research

Objectives: To develop the International Classification of Functioning, Disability, and Health (ICF) Core Sets for deafblindness to facilitate standardized assessment, intervention, and communication on deafblindness across the globe.

The World Health Organization's (WHO) International Classification of Functioning, Disability, and Health (ICF) provides a comprehensive framework for understanding health and functioning. Derived from the ICF, Core Sets are crucial lists of categories describing key aspects of functioning and disability specific to various health conditions. ICF Core Sets enhance accuracy and effectiveness in rehabilitation assessment, intervention, and communication among stakeholders. While approximately 2% of the global population experiences combined hearing and vision impairment, known as deafblindness, there are currently no tailored ICF Core Sets for this condition. Recognizing this gap, our research team collaborated and lead an international project to develop such a Core Sets.

Design: Our team has completed four phases in the development of ICF Core Sets, including a systematic literature review, a qualitative study with 72 individuals with deafblindness, an expert survey with 105 rehabilitation professionals, and multi-center empirical study in 14 different countries across the globe. These studies aimed to identify the most crucial aspects of body structure and functioning, activities and participation, as well as environmental and personal factors for people living with deafblindness. We are currently finalizing the Core Sets for presentation at the upcoming ICF Consensus Conference in Spain in October 2024. This project involved global collaboration with researchers, clinicians, and experts in deafblindness from 15 countries across all six WHO regions.

Setting: Global

Participants: Adults and older adults with deafblindness

Interventions: Not Applicable

Main Outcome Measures: The Centre for Epidemiological Studies Depression Scale, the Lawton Browdy Instrumental Activities of Daily Living Scale, the Mini-Mental State Exam, the ICF checklist, and ICF questionnaires.

Results: The identified prevalent codes related to body structures and functions were vision, hearing, touch, and perception. The prevalent domains related to activities and participation involved communication (d3), mobility (d4), and interpersonal interactions and relationships (d6), major life areas (d7), and community, social, and civic life (d9). Among environmental factors, codes related to Services, systems, and policies (e5) and products and technology (e1) were the largest. Additionally, health status, gender, and age emerged as personal factors.

Conclusions: Developed collaboratively with experts, healthcare professionals, and individuals with lived experience, ICF Core Sets customized for deafblindness hold substantial promise within the rehabilitation field, benefiting healthcare professionals, policymakers, researchers, and individuals with deafblindness globally.

Author(s) Disclosures: No conflicts to declare