Development of core sets for deafblindness: an international expert survey on functioning and disability of individuals living with deafblindness using the International Classification of Functioning, Disability, and Health.
Walter Wittich, Shirley Dumassais, Atul Jaiswal and 4 others
PMID 38502555WHAT IT FOUND
Experts named communication, daily routine, mobility, mental and sensory functions, and support and relationships as key functioning areas for people living with deafblindness.
This maps what to assess, not proof that treatment works.
Key findings
01Experts linked survey responses to 421 unique ICF categories, and 133 of those categories were used by 5% or more of respondents.
02The most frequently used overall categories were mental functions, support and relationships, and sensory functions and pain.
03Communication, carrying out daily routine, and mobility were the top three Activities and Participation categories.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
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What it does not show
This was a convenience sample recruited through social media, email lists, and snowballing, so it may not represent all professionals working in deafblindness. The survey was open and the platform did not track IP addresses, so respondents may have answered more than once. The analysis included 105 participants, while 221 people completed the survey. Selection included stratification and exclusion of one-word answers. The study did not directly target or involve patients or the public, so the findings are expert perspectives rather than lived-experience priorities. The results describe ICF category frequencies, not patient outcomes, treatment effects, or a validated Core Set. Personal factors were not coded, although concepts such as comorbidity, housing, and mental health were mentioned.
Declared interests
No conflicts of interest with any financial organization were declared. Funding came from Deafblind International, the Deafblind Ontario Services Foundation, the FRQS Quebec Vision Health Research Network, and a Global Partnerships grant from Canadian Hearing.
The easy way to misread this
Do not treat these ICF categories as a validated assessment or proof of what helps people with deafblindness. This expert survey reports which categories professionals mentioned, not patient outcomes or treatment effects.