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

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.