Adherence to mental health care and caregiver-patient relationship after diagnosis of psychogenic non-epileptic seizures: Longitudinal follow-up study. (August 2020)

• Record Type: Journal Article
• Authors: Fettig, Mélanie; El-Hage, Wissam; Klemina, Irina; Biberon, Julien; de Toffol, Bertrand; Thiriaux, Anne; Visseaux, Jean François; Lemesle Martin, Martine; Schwan, Raymund; Bechiri, Fatiha; Cohn, Alice; Meyer, Mylene; Maillard, Louis; Hingray, Coraline
• Is Part Of: Seizure. Volume 80(2020)
• Page Start: 227
• Page End: 233
• Publication Date: 2020-08
• Subjects: PNES -- Adherence to care -- Caregiver-patient relationship -- Psychotherapy -- Treatment -- Functional neurological symptom disorder -- Mental health caregivers; Epilepsy -- Periodicals; Epilepsy -- Periodicals; Seizures -- Periodicals; Épilepsie -- Périodiques; Electronic journals; Electronic journals; 616.853
• DOI: 10.1016/j.seizure.2020.06.001
• Languages: English
• ISSNs: 1059-1311

Abstract

Graphical abstract: Highlights: Adherence to mental health care for patients with PNES is poor, decreases over time. Reasons for non-adherence include lack of interest and feeling better. Ongoing follow-up decreases sharply between 6 (64.8 %) and 24 months (25.8 %). Patients who adhere have an overall positive view of their therapy. Mental health caregivers have an overall more negative view of care than patients. Abstract: Purpose: This study aimed to describe the quality of adherence to mental health care follow-up and the mental health caregiver-patient relationship after diagnosis of psychogenic non-epileptic seizures (PNES). Methods: We conducted an ancillary study of a multicenter prospective study. Patients (n = 108) received a standardized diagnostic explanation of PNES following video-EEG. They were referred to their community mental health centers or to a private psychiatrist/psychologist, who received written information about PNES and the study. Data collected about adherence to care (follow-up started or not, consensual and those who withdrew non-consensually, ongoing follow-up) were cross-tabulated from patients and care structures by telephone at 6, 12, 18 and 24 months after diagnosis. At M24, we collected reasons for stopping follow-up by phone using a predefined 9-item questionnaire. We also assessed the perception of the caregiver-patient relationship among patients who started follow-up and their mental health caregivers with a simple questionnaire based on five dimensions: feeling comfortable, continuity of care, content of therapy sessions, effectiveness of therapy sessions, and the patient's overall assessment of the follow-up. Results: From M6 to M24, ongoing follow-up decreased from 64.8 to 25.8%, while the "not following initial recommandations" group of patients (those who never started follow-up and those who withdrew non-consensually) increased from 35.2 to 64.9%. We found two main reasons for stopping follow-up: lack of interest and feeling better. Adherent patients had an overall more positive view of their therapy than caregivers. Conclusion: Only a third of PNES patients adhered to a mental health care program and felt comfortable in the caregiver-patient relationship. Solutions need to be found to help patients understand the interest of follow-up therapy and help mental health caregivers improve their feeling of competence.