What is it about?
Primary progressive aphasia causes gradual language loss, which affects daily communication. Communication participation, or how people use communication in daily life, is essential to measure in primary progressive aphasia. We conducted interviews with 9 patient-partner pairs to test whether a common communication participation questionnaire (Communicative Participation Item Bank, or CPIB) captures their experiences. Participants found the tool clear and useful but recommended adding more response options and questions about phone/video communication.
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Why is it important?
No previous study had examined whether the CPIB fully captures the communication experiences of people with primary progressive aphasia. Our interview approach revealed that while the measure is generally valid, specific modifications, such as adding a fifth response option and including technology-based communication like phone and video calls, are needed to better track disease progression and intervention outcomes in this population.
Perspectives
The most valuable part of this study was hearing directly from participants about what matters most in their daily communication. Rather than assuming a questionnaire works for everyone, we asked the people who would be using it. Their feedback was specific, thoughtful, and will directly improve how we measure communication outcomes. I'm particularly excited about how this study might influence outcome measure development for neurodegenerative conditions, ensuring measures evolve alongside the populations they serve.
Ollie Fegter
Northwestern University
Read the Original
This page is a summary of: Face and Content Validation of the 10-Item Communicative Participation Item Bank General Short Form for Primary Progressive Aphasia: A Cognitive Interviewing Study, American Journal of Speech-Language Pathology, October 2025, American Speech-Language-Hearing Association (ASHA),
DOI: 10.1044/2025_ajslp-25-00085.
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