Residual physical outcome and daily living 3 to 6 years after Guillain-Barré syndrome

Patients and methods.

The patients studied had participated in the Dutch GBS trial, in which treatment with plasma exchange was compared with IV immunoglobulins.2 Of the 150 patients who had participated in the Dutch GBS trial, 139 could be traced, and 134 of them were willing to participate in our study. On admission to the trial, all patients fulfilled the criteria for acute GBS, were still within 2 weeks of onset of the disease, and were unable to walk more than 10 meters without a walker or another person’s support.

Six years after the trial started, these patients were asked to complete a questionnaire. At this time they were between 31 and 77 months postonset of GBS. The questionnaire contained multiple choice questions relating to the contemporary physical condition, to the situation at work and at home, and to leisure activities. If the respondent indicated that a change had occurred, he or she was asked whether the change was due to GBS. Furthermore, the residual neurologic condition was assessed according to the functional assessment scale (F-score), modified from Hughes,3 and a standard neurologic examination was done.

The Kruskal-Wallis test was used for testing the hypothesis that continuous outcomes from three (or more) groups come from the same population. The Mann-Whitney test was used for two groups. Comparison of percentages was performed using the chi-square test.

Results.

Of the 134 participating patients, 6 were excluded because of incomplete data. Six other patients under the age of 16 years were left out of the analysis because their age-related psychosocial circumstances were not the aim of our study. Therefore, 122 patients were available for further analysis.

Eighty-four patients had no (F = 0) or only minor neurologic symptoms or signs (F = 1). Together they made up the group with good recovery. Twenty-four patients showed a moderate recovery (F = 2: able to walk more than 10 meters without assistance), and 14 patients were left with severe residual signs (F = 3: able to walk more than 10 meters only with a walker or support; F = 4: bed- or chairbound).

In table 1, the number of patients who had to change work, mode of living, and leisure activities is indicated. Between 15 and 44% showed changes. The most frequent causes for change in work and leisure activities were loss of power (77% and 71%, respectively) and poor condition (50% and 52%, respectively).

In 63% of the patients, one or more changes in psychosocial status were observed: in 50% of patients with good recovery, in 88% with moderate recovery, and in 100% with severe residual signs.

The influence of the final F-score, muscle power measured with a Medical Research Council sumscore, sensory deficit in arms or legs, and muscle ache on the changes in leisure activities, work, and functioning at home was assessed (table 2). All factors had some effect. Age was of no influence.

Nineteen percent of the patients mentioned sexual problems. Some of these reported only that their sexual activity had decreased. A few gave a more specified answer, mentioning problems with erection and loss of sexual feelings.

Discussion.

In 63% of our patients, one or more aspects of psychosocial status had changed owing to GBS 3 to 6 years after onset of GBS. Lasting changes for the partner were found in 39% of our patients. These results were obtained from patients who were not able to walk more than 10 meters independently during the acute phase. The final physical recovery of our patients is in accordance with reports of other groups.4,5

Residual weakness and sensory deficit are important risk factors, but the psychosocial status had also changed in patients with good physical recovery. In a study of the HRQL in this patient group, it was also found that patients with good recovery could have a disturbed HRQL.1

It is questionable whether the changes are disease specific or related to a severe disease period. The finding of the clinical outcome score as a strong predictor of psychosocial change stresses disease specificity, but a general psychological impact from a severe disease cannot be denied. Our aim, however, was to document the changes in GBS patients to see whether support in the recovery phase should be improved.

GBS caused an alteration in work in more than one third of the patients who had been employed. Most of them did not resume work at all; others got work at a lower level. In a retrospective analysis of a group of patients who needed artificial ventilation, De Jager et al.6 report this number to be 40%. In addition to the physical factors (see table 2), our patients frequently mentioned poor condition as a cause of change in work or leisure activities, especially in patients with good physical recovery. Remarkably, none of the patients with severe residual symptoms complained about poor condition, possibly because their activities were already limited by their handicap. Ropper et al.7 mention that physical fatigue often occurs in the first year of GBS, but that it is rarely disabling. Our systematic results contradicted this impression from a large neurologic clinical series. Our results confirmed a report that despite clinical recovery, patients can continue to have persistent decreases in physical performance.8 Recovery of a GBS patient may not be complete despite normal physical performance.

Furthermore, disturbances of sensation in the arms had a significant influence on work and functioning at home. A trend was found with respect to diminished sensation in the hands and the feet for leisure activities. In addition, muscle ache had a highly significant influence on leisure activities and functioning at home.

Nineteen percent also mentioned sexual problems. This is a problem that might be overlooked easily in this group of patients.