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

Simple item page
Author(s)Cohen, Matthew L.
Author(s)Harnish, Stacy M.
Author(s)Lanzi, Alyssa M.
Author(s)Brello, Jennifer
Author(s)Hula, William D.
Author(s)Victorson, David
Author(s)Nandakumar, Ratna
Author(s)Kisala, Pamela A.
Author(s)Tulsky, David S.
Date Accessioned2023-05-15T17:47:16Z
Date Available2023-05-15T17:47:16Z
Publication Date2022-12-27
DescriptionThis article was originally published in Quality of Life Research. The version of record is available at: https://doi.org/10.1007/s11136-022-03337-2
AbstractPurpose: 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.
SponsorThis study was funded by the Gordon and Betty Moore Foundation (GBMF #5299 to MLC).
CitationCohen, M.L., Harnish, S.M., Lanzi, A.M. et al. Establishing severity levels for patient-reported measures of functional communication, participation, and perceived cognitive function for adults with acquired cognitive and language disorders. Qual Life Res 32, 1659–1670 (2023). https://doi.org/10.1007/s11136-022-03337-2
ISSN1573-2649
URLhttps://udspace.udel.edu/handle/19716/32740
Languageen_US
PublisherQuality of Life Research
Keywordspatient-reported outcomes
Keywordspatient-reported outcome measures
Keywordsreference values
Keywordsreference standards
Keywordscognitive impairments
Keywordsacquired communication disorders
TitleEstablishing severity levels for patient-reported measures of functional communication, participation, and perceived cognitive function for adults with acquired cognitive and language disorders
TypeArticle
Files
Original bundle
Now showing 1 - 1 of 1
Thumbnail Image
Name:
Establishing severity levels for patient‑reported measures.pdf
Size:
1.34 MB
Format:
Adobe Portable Document Format
Description:
Main article
Download
License bundle
Now showing 1 - 1 of 1
No Thumbnail Available
Name:
license.txt
Size:
2.22 KB
Format:
Item-specific license agreed upon to submission
Description:
Download
Collections
Open Access Publications
Open Access Publications
Open Access Publications
Open Access Publications