Abstract

Introduction. Guillain-Barré syndrome (GBS) is a polyradiculitis that typically presents as symmetrical ascending paralysis. Although symptoms resolve in the majority of cases, many patients retain deficits for years after GBS. The disease can be triggered by infections or, in rare cases, by vaccinations. Methods . An anonymous questionnaire was designed to inquire about the health status of patients, in addition to general data. For this purpose, both the short-form-36 health survey (SF-36) and the Overall Neuropathy Limitations Score (ONLS) were used. Part of the questionnaire also addressed patients' attitudes toward vaccination and was aligned with a 2018 German infection study. This questionnaire was sent to former GBS patients at Jena University Hospital, and to recipients of a GBS magazine, which is a German journal quarterly sent to about 400 affected people who have suffered from GBS. Results. It was possible to include 130 questionnaires in the analysis. Overall, 78.8% had GBS and 21.1% had CIDP, 62.3% were male, 36.2% were female. Patients averaged 66.31 years of age and had their disease between 1991 and 2020. Health status was assessed using the SF-36 and results were compared with a sample from Germany. On average, the former GBS or CIDP patients scored worse in each of the 8 dimensions of the SF-36 than the comparison sample. Most limitations were related to the physical role function category, followed by physical functioning and general health perception. In the ONLS, 19.2% reported having no neurological symptoms and 82.3% reported being able to walk at least 10 meters without assistance. However, the gait pattern was unremarkable in only one in three patients. The former GBS patients were significantly more vaccine-critical than an infection study 2018 had determined for the German population. Thus, 25.2% of the former GBS patients were rather negative or negative toward vaccinations in general, compared with 6% in the infection protection study. 27.9% reported that a health care professional had advised against vaccination (compared with 10% in the German general population). Among these, fear of side effects was the most common reason for not getting vaccinated, at 38.3%. While 76.6% of the subjects were vaccinated before GBS, only 58.1% were vaccinated after GBS. 39.1% said they feared that vaccination would trigger GBS in them again, and 12.6% of respondents thought their illness was triggered by vaccination. Conclusion . Although recurrence of GBS is very rare, and although most vaccinations do not add to the risk of GBS, former patients appear to be significantly more critical of vaccination than the general population. There also appears to be uncertainty on the part of physicians in this regard, so further education should be provided on both sides. The health status of GBS patients is also affected by GBS for years and decades after their illness and many patients retain residuals and limitations.

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