Mélanie Fettig1, Wissam El-Hage2, Irina Klemina3, Julien Biberon4, Bertrand de Toffol2, Anne Thiriaux5, Jean François Visseaux5, Martine Lemesle Martin6, Raymund Schwan7, Fatiha Bechiri3, Alice Cohn3, Mylene Meyer3, Louis Maillard8, Coraline Hingray9. 1. Pôle Hospitalo-Universitaire de Psychiatrie d'Adultes du Grand Nancy, Centre Psychothérapique de Nancy, Laxou, France; CHRU de Nancy, Département de Neurologie, Nancy, France. 2. UMR 1253, iBrain, Université de Tours, Inserm, Tours, France; CHRU de Tours, Tours, France. 3. CHRU de Nancy, Département de Neurologie, Nancy, France. 4. CHRU de Tours, Tours, France. 5. CHU de Reims Service de Neurologie, Reims, France. 6. CHU de Dijon, Service de neurophysiologie clinique, Dijon, France. 7. Pôle Hospitalo-Universitaire de Psychiatrie d'Adultes du Grand Nancy, Centre Psychothérapique de Nancy, Laxou, France; INSERM U1114, Université de Strasbourg, Strasbourg, France. 8. CHRU de Nancy, Département de Neurologie, Nancy, France; Université de Lorraine, CNRS, CRAN, UMR 7039, Nancy, France. 9. Pôle Hospitalo-Universitaire de Psychiatrie d'Adultes du Grand Nancy, Centre Psychothérapique de Nancy, Laxou, France; CHRU de Nancy, Département de Neurologie, Nancy, France; UMR 1253, iBrain, Université de Tours, Inserm, Tours, France. Electronic address: c.hingray@chru-nancy.fr.
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.
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.