Adapting a Patient-Reported Outcome Bookmarking Task to Be Accessible to Adults with Cognitive and Language Disorders

• Published in: Journal of speech, language, and hearing research Vol. 64; no. 11; pp. 4403 - 4412
• Main Authors: Cohen, Matthew L, Harnish, Stacy M, Lanzi, Alyssa M, Brello, Jennifer, Victorson, David, Kisala, Pamela A, Nandakumar, Ratna, Tulsky, David S
• Format: Journal Article
• Language: English
• Published: United States American Speech-Language-Hearing Association 01-11-2021
• Subjects: Adult; Adults; Allied Health Personnel; Aphasia; Brain; Brain Injuries, Traumatic; Caregivers; Cognition; Communication Disorders; Diseases; Humans; Injuries; Intervention; Item Analysis; Language Impairments; Measurement Techniques; Neurological Impairments; Neuropsychology; Outcome Measures; Outcomes of Treatment; Patient Reported Outcome Measures; Patients; Psychologists; Severity (of Disability); Speech Language Pathology; Vignettes
• ISSN: 1092-4388; 1558-9102
• DOI: 10.1044/2021_JSLHR-21-00071

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.