Patient‐reported symptoms and experience following Guillain‐Barré syndrome and related conditions: questionnaire development and validation

Siriwardena, A.N., Akanuwe, J.N.A., Botan, V. ORCID: 0000-0003-1583-3913, Laparidou, D., Curtis, F., Jackson, J., Asghar, Z.B. and Hodgson, T.L., 2022. Patient‐reported symptoms and experience following Guillain‐Barré syndrome and related conditions: questionnaire development and validation. Health Expectations, 25 (1), pp. 223-231. ISSN 1369-6513

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Abstract

Background: Guillain-Barré syndrome (GBS) is a rare inflammatory peripheral nerve disorder with variable recovery. Evidence is lacking on experiences of people with GBS and measurement of these experiences.

Objective: We aimed to develop and validate an instrument to measure experiences of people with GBS.

Design: We used a cross-sectional design and online self-administered questionnaire survey. Question domains, based on a previous systematic review and qualitative study, covered experiences of GBS, symptom severity at each stage, healthcare and factors supporting or hindering recovery. Descriptive, exploratory factor and reliability analyses and multivariable regression analysis were used to investigate the relationships between variables of interest, explore questionnaire reliability and validity and identify factors predicting recovery.

Setting and Participants: People with a previous diagnosis of GBS were recruited through a social media advert.

Results: A total of 291 responders, of different sexes, and marital statuses, were included, with most diagnosed between 2015 and 2019. Factor analysis showed four scales: symptoms, information provided, factors affecting recovery and care received. Positive social interactions, physical activity including physiotherapy and movement, changes made at home and immunoglobulin treatment were important for recovery. Multivariable models showed that immunoglobulin and/or plasma exchange were significant predictors of recovery. Employment and recovery factors (positive interactions, work support and changes at work or home, physical activity and therapy), though associated with recovery, did not reach statistical significance.

Conclusion: The questionnaire demonstrated good internal reliability of scales and subscales and construct validity for people following GBS.

Item Type:	Journal article
Publication Title:	Health Expectations
Creators:	Siriwardena, A.N., Akanuwe, J.N.A., Botan, V., Laparidou, D., Curtis, F., Jackson, J., Asghar, Z.B. and Hodgson, T.L.
Publisher:	Wiley
Date:	February 2022
Volume:	25
Number:	1
ISSN:	1369-6513
Identifiers:	Number Type 10.1111/hex.13367 DOI 1773557 Other
Rights:	This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
Divisions:	Schools > School of Social Sciences
Record created by:	Jonathan Gallacher
Date Added:	27 Jun 2023 10:37
Last Modified:	27 Jun 2023 10:37
URI:	https://irep.ntu.ac.uk/id/eprint/49289

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