Poststroke Communication Ability Predicts Patient-Informant Discrepancies in Reported Activities and Participation.

BACKGROUND: Participation in life situations has been identified by people with aphasia (PWA) as an ultimate outcome of rehabilitation and is often measured with patient-reported outcome measures (PROMs) or informant-reported measures. It is known that PWA and informants do not always produce similar scores on measures of activities and participation. However, systematic differences between PWA and informants and the causes of these differences are not well understood. Here, we investigated these differences as a function of language impairment, perceived level of activity and participation success, and depressive symptoms. METHOD: Participants were 29 PWA-informant dyads who completed a performance-based language assessment and three measures related to different aspects of activities and participation. Outcome variables were PWA-informant difference scores in the activities and participation measures. RESULTS: PWA ratings of activities and participation were not statistically significantly associated with performance-based language severity. Hierarchical regression models with both language impairment and informant-reported scores as predictor variables explained 53%-71% of the variance in PWA-informant difference scores (all p < .05). In particular, mild communication challenges were associated with the PWA reporting significantly worse participation than the informant perceived. In contrast, more severe communication challenges were associated with the PWA reporting significantly better participation than the informant perceived. DISCUSSION: These findings highlight the importance of measuring participation by PROM. The PWA's experience of participation is not related to their level of language impairment and is predictably different from their care partners' perspective. As others have also reported, "mild" aphasia is not so mild to the PWA. Similarly, "severe" may not be so severe to the PWA. Further research is needed to connect these findings with counseling and caregiver education. Research on response processes (e.g., response shift) is also warranted.

Establishing severity levels for patient-reported measures of functional communication, participation, and perceived cognitive function for adults with acquired cognitive and language disorders.

PURPOSE: To empirically assign severity levels (e.g., mild, moderate) to four relatively new patient-reported outcome measures (PROMs) for adults with acquired cognitive/language disorders. They include the Communicative Participation Item Bank, the Aphasia Communication Outcome Measure, and Neuro-QoL's item banks of Cognitive Function (v2.0) and Ability to Participate in Social Roles and Activities (v1.0). METHOD: We conducted 17 focus groups that comprised 22 adults with an acquired cognitive/language disorder from stroke, Parkinson's disease, or traumatic brain injury; 30 care partners of an adult with an acquired cognitive/language disorder; and 42 speech-language pathologists who had experience assessing/treating individuals with those and other cognitive/language disorders. In a small, moderated focus-group format, participants completed "PROM-bookmarking" procedures: They discussed hypothetical vignettes based on PROM item responses about people with cognitive/language disorders and had to reach consensus regarding whether their symptoms/function should be categorized as within normal limits or mild, moderate, or severe challenges. RESULTS: There was generally good agreement among the stakeholder groups about how to classify vignettes, particularly when they reflected very high or low functioning. People with aphasia described a larger range of functional communication challenges as "mild" compared to other stakeholder types. Based on a consensus across groups, we present severity levels for specific score ranges for each PROM. CONCLUSION: Standardized, stakeholder-informed severity levels that aid interpretation of PROM scores can help clinicians and researchers derive better clinical meaning from those scores, for example, by identifying important clinical windows of opportunity and assessing when symptoms have returned to a "normal" range.

Adapting a Patient-Reported Outcome Bookmarking Task to be Accessible to Adults With Cognitive and Language Disorders.

Background Patient-reported outcome (PRO) measures produce scores that do not always have obvious clinical meaning. The PRO-bookmarking procedure is a new and promising way to make PRO measures more meaningful and interpretable. However, the materials and procedures of the task may benefit from adaptations to be more accessible to individuals with cognitive and language disorders. Aims This study aims to provide an overview of the iterative refinement process used to modify the materials and procedures of the PRO-bookmarking task so that they are more accessible to adults with acquired cognitive and language impairments. Method and Procedures Our team of health psychologists, neuropsychologists, and speech-language pathologists (SLPs) conducted two focus groups with SLPs and care partners of people with aphasia using the same PRO-bookmarking materials and procedures as previous reports. These PRO-bookmarking materials and procedures were then refined iteratively based on discussion with those who participated in focus groups and among the research team, and three more times in the course of 16 additional focus groups of different stakeholders: people with Parkinson's disease, aphasia, or traumatic brain injury; care partners of people with those conditions; and SLPs who have experience with those, and other adult-acquired conditions. Outcomes and Results The PRO-bookmarking materials and procedures underwent four iterations to make them clearer, simpler, and more accessible. For example, the materials included more structured text and graphic supports where appropriate and the procedures were clustered into smaller discrete tasks and displayed graphically when possible and appropriate. Conclusions PRO-bookmarking materials and procedures were made simpler and more structured to increase their accessibility to adults with cognitive and language impairments. In fact, these adaptations made the tasks simpler and clearer for all types of stakeholders.