Deafblindness describes the presence of both vision and hearing difficulties of any severity across the lifespan. The Nordic Definition describes deafblindness as “a combined vision and hearing impairment of such severity that it is hard for the impaired senses to compensate for each other. Thus, deafblindness is a distinct disability”. According to the World Federation of the Deafblind, between 0.2 and 2% of the world’s population live with some form of deafblindness. Some of the most common genetic causes of deafblindness include Usher Syndrome and CHARGE Syndrome; however, most persons living with deafblindness are over the age of 65.

Deafblindness affects almost all aspects of human functioning, and can severely threaten quality of life, independence and the ability to participate. Given the heterogeneity of deafblindness, the International Classification of Functioning, Disability, and Health (ICF) can serve as a common language and will prove to be helpful in standardizing the development and selection of outcome measures for service delivery with persons living with deafblindness.

The development of the ICF Core Sets for Deafblindness is a global collaborative effort. The policy lead for this project is Ricard Lopez, representing the European Deafblind Network. The scientific lead is Dr. Walter Wittich, based at the School of Optometry, Université de Montréal, Canada. Together with the World Federation of the Deafblind and Deafblind International, they brought together representatives and data from 54 countries across all six regions of the WHO.

The project encompassed a preparatory phase that included a systematic literature review, a qualitative study, an expert survey, an empirical study, and an international consensus conference, during which the Comprehensive, Intermediate and Brief ICF Core Sets for deafblindness were decided. Click on the following weblinks to access the publications which reported on these studies and on the international consensus conference:

• Protocol Publication: https://pubmed.ncbi.nlm.nih.gov/34905579/

• Systematic literature review Part 1: https://pubmed.ncbi.nlm.nih.gov/37458491/

• Systematic literature review Part 2: https://pubmed.ncbi.nlm.nih.gov/39235255/

• Expert survey: https://pubmed.ncbi.nlm.nih.gov/38502555/

• Qualitative study: https://pubmed.ncbi.nlm.nih.gov/39387852/

• Cross-sectional empirical study: conditionally accepted for publication in Otorhinolaryngology

• International Consensus Conference: accepted for publication in the British Journal of Visual Impairment

The Comprehensive Core Set consists of 218 codes covering every aspect that is relevant, including those important for advocacy and policy. Click here to access this core set: https://osf.io/a942k/
The Intermediate Core Set contains 137 chosen for interdisciplinary communication. Click here to access this core set: https://osf.io/627pf/
The Brief Core Cet is made up of 33 codes prioritized for individual clinical encounters. Click here to access this core set. Click here to access this core set: https://osf.io/nk29j/

You can find ongoing updates on the project at https://whoisdeafblind.org/. For more information, feel free to contact the scientific lead Dr. Walter Wittich (walter.wittich@umontreal.ca).