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

Abstract

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.

Explanatory factors of quality of life in psychogenic non-epileptic seizure

“…A study related to this protocol showed that 64.9 % did not follow the initial follow-up recommendations [42]. The two main reasons for stopping follow-up were the lack of interest and the sense of well-being according to this study [42]. In our study, only 55.1 % of the patients completed the 24 months follow-up protocol.…”

“…Patients with PNES may present diagnostic acceptance difficulties and the idea of psychological care is often not easy for patients at first glance. A study related to this protocol showed that 64.9 % did not follow the initial follow-up recommendations [42]. The two main reasons for stopping follow-up were the lack of interest and the sense of well-being according to this study [42].…”

Analisis faktor pemanfaatan pelayanan Rumah Sakit Jiwa: Systematic literature review

“…Pengetahuan yang rendah dan kurangnya akses ke informasi tentang penyakit mempersulit proses pengasuhan, dan menghambat kesejahteraan keluarga. Keluarga yang memiliki pengetahuan baik dan memiliki pengetahuan yang tidak baik akan memiliki perbedaan dalam menghadapi anggota keluarga yang memiliki gangguan jiwa (Alifariki, 2019;Buchman-Wildbaum, Váradi, Schmelowszky, Griffiths, Demetrovics, & Urbán, 2020;Fettig, El-Hage, Klemina, Biberon, de Toffol, Thiriaux, Visseaux, Martin, Schwan, Bechiri, Cohn, Meyer, Maillard, & Hingray, 2020;Tristiana, Triantoro, Nihayati, Yusuf, & Abdullah, 2019).…”

Working toward the ideal situation: A pragmatic Epi-Psy approach for the diagnosis and treatment of psychogenic nonepileptic seizures

“…The professionals, meanwhile, report that they feel uncomfortable treating PNES, often due to a lack of knowledge (10) or the difficulty of referring patients to PNES-trained therapists. (9) (10) This situation causes a certain amount of harm to patients and their families.…”