The International Classification of Functioning, Disability and Health Core Set for deafblindness. Part I: a systematic review of outcome measures.
Abinethaa Paramasivam, Atul Jaiswal, Shreya Budhiraja and 16 others
PMID 37458491WHAT IT FOUND
Researchers assessed deafblindness using 314 different outcome measures, but only three were specific to the condition.
Most tools measured depression or generic vision and hearing loss. Clinicians should not assume standard hearing or vision tests capture the combined functional impact of deafblindness.
Key findings
01A total of 314 outcome measures were identified across the included studies, but only three were specifically developed for deafblindness.
02The most frequently used standardized measures were pure-tone audiometry and visual acuity tests, which assess the individual senses rather than the combined impact of dual sensory loss.
03Patient-reported standardized measures focused heavily on mental health, with the Centre for Epidemiological Studies Depression Scale used in 24 articles.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The review did not perform a quality appraisal or risk of bias assessment, following ICF Core Set development guidelines. Only studies published from 2011 onwards were included, potentially missing older outcome measures. The review focused exclusively on adults; findings do not apply to children and youth with deafblindness. Genetic and imaging studies were excluded, so measures related to those domains were not captured. Most included studies were from Europe and North America, limiting generalizability to low- and middle-income countries.
Declared interests
The authors declare no conflicts of interest. The study was funded by Deafblind International and the Deafblind Ontario Services Foundation.
The easy way to misread this
Do not interpret the high number of outcome measures (314) as evidence of a mature assessment field for deafblindness. Only three were specific to the condition, and each was used in a single study. The prevalence of generic hearing and vision tests suggests that current research often fails to capture the unique functional impact of dual sensory loss.