Patient perceptions of outcome measures in chronic inflammatory demyelinating polyneuropathy:a study of the Inflammatory Rasch-built Overall Disability Scale

Abstract

Background: Patients' perceptions of outcome measures used in chronic inflammatory demyelinating polyneuropathy (CIDP) are unknown. Methods: We performed a cross-sectional evaluation of patient perceptions of the Inflammatory Rasch-built Overall Disability Scale (I-RODS) from 41 subjects with CIDP through a structured questionnaire. We assessed perceived hesitation to provide a response, item importance and relevance, understanding of specific items and factors affecting responses. Results: Hesitation to provide a categorical answer was reported by 20% of subjects or more, for 5/24 (20.8%) items. Uncertainty was most frequent for “travel by public transport” (22.4%) and “catch an object (e.g., ball)” (24%). Six of 24 (25%) items were perceived as unimportant to their disease by at least a third of participants. Items most commonly perceived as unimportant were “travel by public transport” in 53.7%, “catch an object (e.g., ball)” in 61% and “dance” in 65.9%. Several items were frequently perceived as irrelevant. These included “move a chair” (39%), “do the dishes” (46.3%), “catch an object (e.g., ball)” (61%), “travel by public transport” (68.3%) and “stand for hours” (82.9%). The understanding of multiple items such as “read a book”, “sit on a toilet” and “take a shower” was found to be highly variable. Fatigue was perceived more commonly than mood (53.7% vs. 17.1%, p = 0.001), and more commonly in younger subjects (p = 0.037), as influencing responses to the I-RODS. Conclusions: Patient-perceived uncertainty, unimportance, irrelevance and poor understanding of items, as well as fatigue and mood, impact on the value of the I-RODS. Greater emphasis on individualized disability assessments requires consideration in future.

Publication DOI: https://doi.org/10.1111/ene.14907
Divisions: College of Health & Life Sciences
Additional Information: This is the peer reviewed version of the following article: Patient perceptions of outcome measures in chronic inflammatory demyelinating polyneuropathy: a study of the Inflammatory Rasch-built Overall Disability Scale, which has been published in final form at https://onlinelibrary.wiley.com/doi/10.1111/ene.14907. This article may be used for non-commercial purposes in accordance With Wiley Terms and Conditions for self-archiving.
Uncontrolled Keywords: chronic inflammatory demyelinating polyneuropathy,outcome measures,patient perception,Neurology,Clinical Neurology
Full Text Link:
Related URLs: https://onlinel ... .1111/ene.14907 (Publisher URL)
http://www.scop ... tnerID=8YFLogxK (Scopus URL)
PURE Output Type: Article
Published Date: 2021-08
Published Online Date: 2021-05-09
Accepted Date: 2021-04-28
Authors: White, Daniel
Englezou, Christina
Rajabally, Yusuf A.

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Version: Accepted Version

Access Restriction: Restricted to Repository staff only until 9 May 2022.


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