Many patients with Guillain-Barré syndrome (GBS) and chronic inflammatory demyelinating polyneuropathy (CIDP) experience excessive fatigue, which may persist for years and reduce quality of life. The authors performed a 12-week study of bicycle exercise training in 20 patients with severe fatigue, 16 with relatively good recovery from GBS, and 4 with stable CIDP. Training seemed well tolerated, and self-reported fatigue scores decreased 20% (p ϭ 0.001). Physical fitness, functional outcome, and quality of life were improved.
Fatigue is a major disabling complaint in patients with immune-mediated neuropathies (IN). The 9-item fatigue severity scale (FSS) has been used to assess fatigue in these conditions, despite having limitations due to its classic ordinal construct. The aim was to improve fatigue assessment in IN through evaluation of the FSS using a modern clinimetric approach [Rasch unidimensional measurement model (RUMM2020)]. Included were 192 stable patients with Guillain-Barré syndrome (GBS), chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) or polyneuropathy associated with monoclonal gammopathy of undetermined significance (MGUSP). The obtained FSS data were exposed to RUMM2020 model to investigate whether this scale would meet its expectations. Also, reliability and validity studies were performed. The original FSS did not meet the Rasch model expectations, primarily based on two misfitting items, one of these also showing bias towards the factor 'walking independent.' After removing these two items and collapsing the original 7-point Likert options to 4-point response categories for the remaining items, we succeeded in constructing a 7-item Rasch-built scale that fulfilled all requirements of unidimensionality, linearity, and rating scale model. Good reliability and validity were also obtained for the modified FSS scale. In conclusion, a 7-item linearly weighted Rasch-built modified FSS is presented for more proper assessment of fatigue in future studies in patients with immune-mediated neuropathies.
One course of intravenous immunoglobulins (IVIg) of 2 g/kg is standard treatment in Guillain-Barré syndrome (GBS) patients unable to walk independently. Despite treatment some patients recover poorly, in part related to rapid consumption of IVIg, indicating that they may benefit from a second course of IVIg. The aim of the study is to determine whether a second course of IVIg, administered 1 week after start of the first course in patients with GBS and predicted poor outcome improves functional outcome on the GBS disability scale after 4 weeks. Secondary outcome measures include adverse events (AEs), Medical Research Council sumscore and GBS disability score after 8, 12, and 26 weeks, length of hospital and ICU admission, mortality, and changes in serum IgG levels. GBS patients of 12 years and older with a poor prognosis, based on the modified Erasmus GBS outcome score (mEGOS) at 1 week after start of the first IVIg course are eligible for randomization in this double-blind, placebo-controlled (IVIg or albumin) clinical trial. This study will determine if a second course of IVIg administered in the acute phase of the disease is safe, feasible, and effective in patients with GBS and a poor prognosis. This Dutch trial is registered prospectively as NTR 2224 in the Netherlands National Trial Register (NTR) which is the Primary Registry in the WHO Registry Network for the Netherlands.
Objective: To elucidate the effects of physical exercise in severely fatigued patients with Guillain-Barré syndrome and chronic inflammatory demyelinating polyneuropathy, and to clarify the mutual relationships between 5 domains studied in these patients: physical fitness, fatigue, objectively measured actual mobility, perceived physical functioning, and perceived mental functioning. Design: Case series. Subjects/patients: Twenty patients with Guillain-Barré syndrome and chronic inflammatory demyelinating polyneuropathy. Methods: The patients undertook a 12-week physical exercise program. Relationships between domains were studied in the change scores, and additionally in the baseline data of patients. The percentage of significant relationships between each pair of domains was determined. Results: In the change scores, a small percentage of significant relationships was found between the physical fitness domain and the other 4 domains (2/30, 7%). A higher percentage of significant relationships was found between the domains perceived mental functioning and actual mobility (44%), perceived mental functioning and perceived physical functioning (44%), and between fatigue and perceived physical functioning (33%). Generally, similar patterns were found in the baseline data. Conclusion: Changes in fatigue, actual mobility and perceived functioning seem not to be influenced by changes in physical fitness. This study stresses the presence and importance of additional effects of a physical training program, not directly related to increasing fitness.
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