Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2025 Jun;30(2):e70022.
doi: 10.1111/jns.70022.

Patient-Reported Outcome Measures for Assessing Health-Related Quality of Life in Patients With Polyneuropathies, Focusing on Guillain-Barré Syndrome and Chronic Inflammatory Demyelinating Polyneuropathy: A Systematic Review of Measurement Properties

Farah Pelouto  1 , Adája E Baars  1 , Nowshin Papri  1   2 , Juanita A Haagsma  3 , Bart C Jacobs  1   4 , Caroline B Terwee  5   6
Affiliations

Patient-Reported Outcome Measures for Assessing Health-Related Quality of Life in Patients With Polyneuropathies, Focusing on Guillain-Barré Syndrome and Chronic Inflammatory Demyelinating Polyneuropathy: A Systematic Review of Measurement Properties

Farah Pelouto et al. J Peripher Nerv Syst. 2025 Jun.

Abstract

Guillain-Barre syndrome (GBS) and chronic inflammatory demyelinating polyneuropathy (CIDP) are immune-mediated peripheral neuropathies. Despite treatment, patients may report residual deficits, pain, and fatigue with considerable impact on quality of life. A systematic review was conducted of the methodological quality of current patient-reported outcome measures (PROMs) for measuring health-related quality of life (HRQoL) in patients with GBS and CIDP. A literature search was conducted in EMBASE, MEDLINE, Web of Science, and Google Scholar. PROMs developed to measure (aspects of) HRQoL in patients with polyneuropathy were classified using the Wilson and Cleary model. Measurement properties were evaluated in accordance with Consensus-based Standards for selection of health Measurement Instruments (COSMIN) guideline. A total of 57 articles identified 31 unique PROMs that are used for measuring HRQoL in patients with polyneuropathies. Of these, 22 measured symptom status, 19 functional status, and 4 general health perception. Eight PROMs were developed or validated in patients with GBS/CIDP. None of the PROMs demonstrated sufficient content validity for recommendation in this population. Only the Rasch-built Fatigue Severity Scale (R-FSS) performed sufficiently across all other measurement properties. The Inflammatory Rasch-built Overall Disability Scale (I-RODS) and IN-QoL are not recommended for use because of insufficient construct validity. GBS Patient Experience Questionnaire, Chronic Acquired Polyneuropathy Patient-Reported Index (CAP-PRI), Fatigue Severity Scale (FSS), R-FSS, Rotterdam Handicap Scale (RHS) and the 36-Item Short Form Health Survey (SF-36) need further validation. PROMs of good quality assessing all relevant aspects of HRQoL are required for better insight in HRQoL in patients with GBS and CIDP.

Keywords: Guillain‐Barre syndrome (GBS); measurement properties; patient‐reported outcome measures; polyneuropathychronic inflammatory demyelinating polyneuropathy (CIDP).

PubMed Disclaimer

Conflict of interest statement

C.B.T. is one of the founders of COSMIN, past president of the PROMIS Health Organization, and head of the Dutch‐Flemish PROMIS National Center. The other authors declare that they have no competing interests.

Figures

FIGURE 1
FIGURE 1
PRISMA flowchart of selection of published articles and PROMs.
See this image and copyright information in PMC

References

    1. Willison H. J., Jacobs B. C., and van Doorn P. A., “Guillain‐Barré syndrome,” Lancet 388, no. 10045 (2016): 717–727. - PubMed
    1. Shahrizaila N., Lehmann H. C., and Kuwabara S., “Guillain‐Barré Syndrome,” Lancet 397, no. 10280 (2021): 1214–1228. - PubMed
    1. Van den Bergh P. Y. K., van Doorn P. A., Hadden R. D. M., et al., “European Academy of Neurology/Peripheral Nerve Society Guideline on Diagnosis and Treatment of Chronic Inflammatory Demyelinating Polyradiculoneuropathy: Report of a Joint Task Force‐Second Revision,” Journal of the Peripheral Nervous System 26, no. 3 (2021): 242–268. - PubMed
    1. Leonhard S. E., Mandarakas M. R., Gondim F. A. A., et al., “Diagnosis and Management of Guillain‐Barré Syndrome in Ten Steps,” Nature Reviews. Neurology 15, no. 11 (2019): 671–683. - PMC - PubMed
    1. Köller H., Kieseier B. C., Jander S., and Hartung H. P., “Chronic Inflammatory Demyelinating Polyneuropathy,” New England Journal of Medicine 352, no. 13 (2005): 1343–1356. - PubMed

Publication types

MeSH terms