Long-term impact on work and private life after Guillain–Barré syndrome
Introduction
Guillain–Barré syndrome (GBS) is an acute, immune-mediated polyneuropathy. The main symptoms are muscle weakness, varying from mild paresis to complete paralysis of all voluntary muscles, and mild to moderate sensory changes. After a progressive phase of up to 4 weeks, the disease remains stable for about 2–4 weeks. Then a prolonged recovery phase begins, lasting 1–2 years. Ten to thirty-five percent of the patients have appreciable residual motor and/or sensory phenomena [1], [2], [3], [4]. These residua are usually distally localised in the upper and lower limbs. Many patients also continue to complain about fatigue and lack of condition. The long-term impact of these residual symptoms on ordinary life, for instance, on the situation at home, at work or on leisure activities can be extensive. This has been mentioned in some reports and personal experiences [1], [5], [6], [7], [8], [9], [10]. However, a systematic study on this subject had been lacking [11]. Therefore, we decided to study the psychosocial effects of GBS 2.5–6.5 years after the onset of the disease.
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Patients
A total of 150 patients participated in the Dutch Guillain–Barré trial, comparing immunoglobulins intravenously with plasma exchange [12]. All patients met the criteria for acute GBS. They were included in the trial within 2 weeks of onset of the disease and were, at that time, unable to walk more than 10 m without a walker or support from another person. Of the 150 GBS patients who participated in the trial, 122 were available for our study 31–77 months after the acute phase of their disease.
General information
The group of patients consisted of 60 men and 62 women, ranging in age from 20 to 85 years. At the initial functional assessment, 26 patients scored F3, 75 scored F4 and 21 scored F5 (F5=ventilator dependent). At nadir, 6 patients had an F score of 3, 63 of 4 and 53 patients were ventilator dependent. In 36% of the patients, positive serology for Campylobacter jejuni was found.
Neurological residua
Eighty-four patients (69%) had no or unimportant residua (F is 0 or 1). Twenty-four (20%) showed a moderate recovery
Discussion
Thirty-one percent of our patients had moderate to severe residual signs. This level of final physical recovery is in accordance with other groups reported [1], [2], [3], [4] and once more accentuates the seriousness of residual signs in a considerable number of patients, even 2.5 or more years after GBS.
It is generally believed that no further recovery can be expected 2–3 years after GBS [16]. It is therefore remarkable that in our group, 21% of the patients still noticed improvement after
Acknowledgements
This project was supported by the foundation “De Drie Lichten” in the Netherlands.
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2023, Pediatric NeurologyCitation Excerpt :This therapeutic intervention probably resulted in better neurological recovery in our cohort. In a study from the Netherlands, Roodbol et al.7 followed up 37 children with GBS after 116-17 years of discharge and reported that 24 (65%) had residual complaints, which included paraesthesia in 14 (38%), unsteadiness of gait in the dark in 13 (37%), painful hands or feet in nine (24%), and severe fatigue in five (22% of the 23 children who completed the questionnaire) children. A wide range of behavioral issues and below-the-normal quality of life were also reported.
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2012, Journal of the Neurological SciencesCitation Excerpt :Lately several studies stressed the central role of fatigue in the subjective limitation of daily activities, in spite of good recovery of muscle strength. For example, Bernsen et al [11] examined the functional handicap during daily life activities in 122 patients following GBS, 3–6 years after the acute disease, and reported that approximately 40% of the patients had to change their work or life style due to residual functional disability. In a similar study [12] among 70 patients examined 3–5 years after GBS, 27% reported changes in personal life style because of increased fatigability.