Evaluation and modification of the 10‐item short form Communicative Participation Item Bank for persons with primary progressive aphasia

Abstract

AbstractBackgroundPrimary progressive aphasia (PPA) is a dementia syndrome characterized by language and communication impairments with relative sparing of other cognitive domains. Given the language difficulties associated with PPA, it is important to develop outcome measures relevant to the communication experiences of persons with PPA (PwPPA). The 10‐item Communicative Participation Item Bank (CPIB) has been used as a measure of communication participation in PPA. However, the CPIB was validated as a disorder‐agnostic measure of communication participation and the content validity has not been evaluated for PPA. The purpose of this study is to evaluate the face and content validity of the 10‐item CPIB for individuals with PPA and their communication partners (CP).MethodPhase one of this project focused on conducting cognitive interviews with participants who had previously completed the CPIB during the Communication Bridge randomized controlled trial (NCT03371706). PwPPAs and CPs each completed the CPIB during a semi‐structured cognitive interview designed to evaluate the measure format, instructions, response options, item comprehension, and relevance of each item to PwPPA experiences. To evaluate content validity, participants were asked open‐ended questions to elicit relevant communication participation experiences missing from the questionnaire. Responses to closed‐ended questions (e.g., clarity, relevance) were tabulated and open‐ended responses (e.g., item comprehension, missing content) were analyzed via thematic analysis. Summaries of measure format, instructions, and response options were generated, as well as item‐level findings regarding comprehension, relevance, and missing content.ResultPreliminary findings revealed both PwPPAs and CPs: a) considered the instructions to be clear (N = 12, 100%); b) recommended adding a fifth response option (e.g., “Somewhat) to better represent the range of communication situations; c) reported all items except one (“persuade…to see a different point of view”) were relevant (N≥10; ≥83%, for 9 items); and d) talking on the phone was the most reported missing communicative participation situation (N = 8; 66%). Further, 2 of 5 PwPPAs reported talking over videochat, and 2 of 5 CPs reported email/texting as missing.ConclusionPreliminary findings indicate that modifications to the 10‐item CPIB short form may be needed for use with PwPPA and their CPs to more fulsomely capture communication participation in PPA.