Patient perceptions of outcome measures in chronic inflammatory demyelinating polyneuropathy: a study of the I-RODS scale.

White, Daniel, Englezou, Christina and Rajabally, Yusuf A (2021) Patient perceptions of outcome measures in chronic inflammatory demyelinating polyneuropathy: a study of the I-RODS scale. European journal of neurology. ISSN 1468-1331. This article is available to all UHB staff and students via ASK Discovery tool http://tinyurl.com/z795c8c by using their UHB Athens login IDs

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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%, "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 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.

DISCUSSION

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 require consideration in future.

Item Type: Article
Additional Information: This article is available to all UHB staff and students via ASK Discovery tool http://tinyurl.com/z795c8c by using their UHB Athens login IDs
Subjects: WL Nervous system. Neurology
Divisions: Emergency Services > Neurology
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Depositing User: Jamie Edgar
Date Deposited: 17 May 2021 14:35
Last Modified: 17 May 2021 14:35
URI: http://www.repository.uhblibrary.co.uk/id/eprint/4329

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