Neurologist assessment of reactions to the diagnosis of psychogenic nonepileptic seizures: Relationship to short- and long-term outcomes

- We assessed patient and caregiver reactions to a diagnosis of PNESs.
- The presence of a caregiver was highly predictive of attendance at follow-up.
- 38.5% of patients and 66.9% of caregivers appeared to accept and understand the diagnosis.
- Patient acceptance at baseline and at 6-12 months predicted outcome at 6-12 months.
- Caregiver acceptance at 6-12 months predicted health-care utilization at 5-10 years.

PurposeTo determine the relationship between neurologist assessment of reactions to the diagnosis of PNESs and outcomes at 6-12 months and at 5-10 years.MethodsTwo hundred thirty-eight patients with psychogenic nonepileptic seizures (PNES) were recruited into a long-term follow-up study. At diagnosis and 6-12 months 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 6-12 months, 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 6-12 months (OR: 123.80, p < 0.001). Outcome at 6-12 months was predicted by patient acceptance at baseline (OR: 2.85, p = 0.006) and at 6-12 months (OR: 13.83, p < 0.001) and by caregiver acceptance at 6-12 months (OR: 10.77, p < 0.001). Presentation to primary or secondary care with attacks at 5-10 years was predicted by caregiver acceptance at 6-12 months (OR: 3.50, p = 0.007).ConclusionPatient understanding and acceptance of the diagnosis of PNESs are linked to outcome at 6-12 months. The beliefs of caregivers may be important for outcome in the longer term, particularly with respect to health-care use.