ISSN 2756-3820
International Journal of Medical Sociology and Anthropology ISSN 2756-3820 Vol. 13 (8), pp. 001-009, August, 2024. Available online at www.internationalscholarsjournals.org © International Scholars Journals
Full Length Research Paper
The transition from pediatric to adult age in patients with Dravet Syndrome: A study on the current management pathways and the challenges ahead
Francesca Bisulli1, Francesca Darra2, Carlotta Stipa3, Lucio Corsaro4, Emanuele Corsaro5, Lorena Trivellato6, Gianluca Vaccaro7
1MD, PhD, Associate professor of Neurology, Department of Biomedical and NeuroMotor Sciences, Alma Mater Studiorum – University of Bologna. 2MD, Associated Professor in Child Neuropsychiatry, Department of Engineering for Innovation Medicine, University of Verona, Italy. 3IRCCS Istituto delle Scienze Neurologiche di Bologna, Full Member of the European Reference Network for Rare and Complex Epilepsies (EpiCARE), Bologna, Italy. 4Advisor – BHAVE, Via Giambattista Vico 1, 00196 Rome, Italy. 5Health, Digital and Marketing Research – BHAVE, Via Giambattista Vico 1, 00196 Rome, Italy. 6Anthropologist Research Advisor – BHAVE, Via Giambattista Vico 1, 00196 Rome, Italy. 7Methodological Advisor – BHAVE, Via Giambattista Vico 1, 00196 Rome, Italy.
Received July 3, 2024; Accepted August 10, 2024 and Published September 06, 2024
Abstract
Dravet Syndrome (DS) is an infantile onset drug-resistant developmental and epileptic encephalopathy, often associated with comorbidities including intellectual disability, behavioral disorders and gait problems. Epileptic seizures usually begin in the first year of life and persist into adulthood, resistant to antiseizure medications. Within the complex care pathway faced by these patients and their families, the transition from pediatric care centers to adult centers represents a critical phase of the patient's journey. If not managed optimally, transition can have significant repercussions on the quality of care and patient management. We conducted a mixed-methods investigation, involving a quantitative survey of 54 neurologists and neuropsychiatrists from 28 national reference centers, and a qualitative survey with 5 specialists and 3 caregivers of patients with DS. The study aimed to investigate the transition of patients from child neurologist clinics to adult clinics exploring management methods, challenges, and unmet needs of patients and their caregivers. The results indicate that transitions to adult centers are currently heterogeneous and often unstructured, with significant implications in terms of the quality of care provided. Particularly, structured transition programs are available in only 70% of centers, and many patients remain in pediatric care beyond adulthood due to perceived better care quality and stability concerns. Additionally, around 19% of patients abandon adult care centers within a year of transition. In order to improve the quality of care and the quality of life for patients with this syndrome, it is essential to listen to the requests of their caregivers, including continuity in patient management, psychological support and planning for the future of their loved ones. The overall fragmented nature of transition strategies highlights the need for initiatives to provide greater structure and continuity in care pathways.
Keywords: Dravet Syndrome, transition, patient journey, rare disease, unmet needs, drug-resistant epilepsy.