Abstract

PurposeTo determine the relationship between neurologist assessment of reactions to the diagnosis of PNESs and outcomes at 6–12months and at 5–10years. MethodsTwo hundred thirty-eight patients with psychogenic nonepileptic seizures (PNES) were recruited into a long-term follow-up study. At diagnosis and 6–12months post diagnosis, doctors recorded their assessments of patient and caregiver reactions to the diagnosis of PNESs. ResultsAt baseline, 92/238 patients (38.7%) and 73/106 caregivers (68.9%) were assessed as having understood and accepted the diagnosis, while 6.7% of patients and 10.4% of caregivers reacted with anger. At 6–12months, patient acceptance rose to 57.7%, with caregiver acceptance static at 70.8%. Attendance at follow-up was predicted by the presence of a caregiver at baseline: only one patient who came with a caregiver at baseline did not attend at 6–12months (OR: 123.80, p<0.001). Outcome at 6–12months was predicted by patient acceptance at baseline (OR: 2.85, p=0.006) and at 6–12months (OR: 13.83, p<0.001) and by caregiver acceptance at 6–12months (OR: 10.77, p<0.001). Presentation to primary or secondary care with attacks at 5–10years was predicted by caregiver acceptance at 6–12months (OR: 3.50, p=0.007). ConclusionPatient understanding and acceptance of the diagnosis of PNESs are linked to outcome at 6–12months. The beliefs of caregivers may be important for outcome in the longer term, particularly with respect to health-care use.

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