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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