Changing the diagnosis from epilepsy to PNES: Patients’ experiences and understanding of their new diagnosis

OBJECTIVE To describe patients' experiences when diagnosed with psychogenic non-epileptic seizures (PNES). METHODS The study was based on in-depth interviews with ten patients, previously diagnosed with epilepsy and treated with antiepileptic drugs (AEDs) whose seizures were subsequently defined as PNES. The empirical material was analyzed by systematic text condensing strategies within the interpretative tradition. RESULTS Switch in diagnosis was demanding, both cognitively and emotionally. The patients had difficulty understanding the diagnosis. When the cause of the seizures was unclear, this resulted in feelings of hopelessness and helplessness, a need for re-evaluation of self-understanding, and increased levels of patient stress. The patients felt that with the change in diagnosis, responsibility was transferred from the health authorities to themselves. CONCLUSIONS The mode of communicating the PNES diagnosis may be decisive for the patients' treatment motivation and ability to cope with the disorder. In order to avoid the patients feeling that they have been abandoned with a difficult diagnosis, close cooperation between neurologists and psychiatrists is essential.