Initial constructs for patient-centered outcome measures to evaluate brain-computer interfaces.
Elena M Andresen, Melanie Fried-Oken, Betts Peters and 1 others
PMID 25806719WHAT IT FOUND
People with severe speech and physical impairments and their caregivers said communication outcomes matter beyond device performance: self-expression, spontaneity, patience from partners, family participation, roles, and support.
Current tools did not capture these details.
Key findings
01A review of 15 existing measures mapped 591 items to the ICF, and 79% of those items mapped to environmental factors rather than to specific BCI communication attributes.
02Interviews produced two preliminary constructs: Quality of Life with seven domains and Assistive Technology with three domains.
03Participants rated communication device issues among their most important topics, and the important issues varied widely across participants.
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
The qualitative sample was small: 8 adults with severe speech and physical impairments, 3 paid caregivers, and 4 unpaid caregivers. Only participants with a consistent, reliable means of communication were interviewed, so people with total locked-in syndrome were not represented. Caregivers were not interviewed for 3 of the 8 adults with severe speech and physical impairments. Healthcare providers and brain-computer interface engineers were not interviewed. The participants raised heterogeneous issues, and the authors stated that saturation was not reached. The review mapped existing instruments but did not directly match patient-generated themes to the item pool. This was a pilot project generating preliminary constructs, not a trial of brain-computer interface effectiveness.
Declared interests
No conflicts-of-interest declaration is included in the supplied text. The parent RSVP Keyboard brain-computer interface study was funded by the National Institute on Deafness and Other Communication Disorders.
The easy way to misread this
Do not conclude that brain-computer interfaces improve communication or quality of life. This paper did not test a brain-computer interface intervention; it interviewed people to suggest what future measures should ask about.