Outcome at 5-10years in psychogenic nonepileptic seizures: what patients report vs. what family doctors report

Objectives: We previously found that family doctor records indicated that 78.1% of 188 patients with PNES were not accessing medical care for their attacks at 5-10. years after diagnosis. We wanted to determine whether this represented a better-than-expected outcome or whether patients had just ceased to access medical care for their attacks. Methods: We sent a postal questionnaire to 221 patients with PNES. We compared the responses with information obtained from family doctors. Results: Seventy-five (33.9%) patients responded to the survey, and, of those, 36.5% reported that they were free of attacks. However, in 52.1% of responders, the date of last attack was more than 6. months previously, and in 39.4%, more than 12. months previously. Comparison with baseline data suggested a substantial long-term reduction in attack frequency in almost all patients. Comparison with family doctor-acquired data showed that 6 patients who reported that they were free of attacks were seeking medical attention for PNES and that 27 patients reported having attacks but were not seeking medical attention for them. Conclusion: There appeared to be a wide variation in what patients regarded as 'free of attacks', suggesting that PNES outcomes based on simply asking patients if they are free of attacks should be interpreted with caution. Reduction in frequency of PNES may explain why some patients who report continuing attacks nonetheless cease to access medical services for them.