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Vocabulary Needs of People with Late-Stage ALS: Synchronous and Asynchronous Data Collection

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Use of online health communities (OHCs) as a source for data collection presents unique challenges and benefits for both researchers and participants. For researchers, OHCs provide an opportunity to target large numbers of potential participants while minimizing time- and cost-intensive recruitment procedures. For participants, OHCs provide a platform for engagement in the research enterprise while eliminating potential limitations associated with participation in clinically-based research. The asynchronous nature of data solicitation allows potential participants increased autonomy with respect to decision-making and timing of participation.

For people with amyotrophic lateral sclerosis (pALS), a neurodegenerative, life-limiting disease, the option to participate in research diminishes with disease progression. Although many pALS are able to use augmentative and alternative communication (AAC) devices, as they enter late-stage ALS they spend a significant portion of time in bed and may be less able to use their device.
The aim of this cross-sectional study is to sample the vocabulary needs of people with late-stage ALS for use with a virtual communication display when in bed. Surveys will be used to elicit vocabulary asynchronously via the OHC PatientsLikeMe ™ and synchronously from live participants in an ALS caregiver support group. Qualitative and quantitative data analysis will yield a corpus of vocabulary stratified by category of need and relative priority. Data will be cross-validated between groups to enhance its validity for the end user. Results and conclusions with be discussed with respect to how the corpus of vocabulary will be leveraged for use with the virtual communication display.


Michelle Gutmann    
Purdue University
United States


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