Initial constructs for patient-centered outcome measures to evaluate brain–computer interfaces

Abstract

Purpose-The authors describe preliminary work toward the creation of patient-centered outcome (PCO) measures to evaluate brain-computer interface (BCI) as an assistive technology for individuals with severe speech and physical impairments (SSPI).Method-In Phase 1, 591 items from 15 existing measures were mapped to the International Classification of Functioning, Disability and Health (ICF). In Phase 2, qualitative interviews were conducted with eight people with SSPI and seven caregivers. Resulting text data were coded in an iterative analysis.Results-Most items (79%) mapped to the ICF environmental domain; over half (53%) mapped to more than one domain. The ICF framework was well suited for mapping items related to body functions and structures, but less so for items in other areas, including personal factors. Two constructs emerged from qualitative data: Quality of Life (QOL) and Assistive Technology. Component domains and themes were identified for each.Conclusions-Preliminary constructs, domains, and themes were generated for future PCO measures relevant to BCI. Existing instruments are sufficient for initial items but do not adequately match the values of people with SSPI and their caregivers. Field methods for interviewing people with SSPI were successful, and support the inclusion of these individuals in PCO research. KeywordsQuality of life; augmentative and alternative communication; communication disorders; severe speech and physical impairments

What is it like to use a BCI? – insights from an interview study with brain-computer interface users

“…One way is to include potential or actual BCI users in research and technology development processes [31][32][33]. Other studies have acknowledged the importance of social participation for users [21,24]. BCIs are reported to increase independence [18] and to provide opportunities for creativity and self-expression [20][21][22].…”

“…Users report benefits in terms of increased independence and autonomy [18], experiencing happiness and enjoyment [10,[19][20][21][22], as well as valuing the opportunity for creativity and self-expression [20][21][22] and self-experience [23]. The possibility of social participation and communication was positively rated [24], whereas the additional workload for their caregivers [18] and their dependence on others [21] was considered worrisome.…”

Brain-Computer Interfaces for Communication: Preferences of Individuals With Locked-in Syndrome

“…12 For that reason, UCD has received increasing attention in the BCI field with the goal to manage BCI users' expectations and to prevent the abandonment of technology by the end user. 6,[13][14][15][16][17][18][19][20][21][22] These studies focused not only on the technical specifications of the BCI system, such as the technique used for recording brain signals (internal or external electrodes 23 ) and general BCI applications (what a user would like to control with a BCI and how well it should work; eg, Huggins et al 14,19 ), but also on the subjective acceptance of the technology. 16,20 Although the opinion of prospective users about BCI applications (beyond communication) has been investigated before, 14,19 to our knowledge, no information has been collected about the user's opinions on different mental strategies for cBCI control, nor on when in the course of their medical condition users would like to be informed about AT and cBCIs.…”

Soliciting BCI user experience feedback from people with severe speech and physical impairments

“…More detailed responses and opinions may be obtained using the interview procedures recommended by Andresen and colleagues. [10]…”

“…[10] However, there has been little discussion within the BCI community about communication methods for facilitating UX feedback. Concepts and techniques from the field of augmentative and alternative communication (AAC) may be useful in adapting feedback scales for use with people with SSPI.…”