Transition in epilepsy – A pilot study with patients in and outside of academic centers
Rattachement africain : ca, us, co, fr. Niveau de preuve : code pays fourni par la source.
Le résumé fourni par la source
RATIONALE: Epilepsy is a complex condition and seizures are only one part of this disease. The move from pediatric to adult healthcare system proves difficult for many adolescents with epilepsy and their families. The challenges increase when patients have epilepsies associated with intellectual and/or developmental disabilities, autism spectrum disorder, and motor disorders. Knowledge and system gaps may exist between the two systems, adding to the challenges. The main goal of this study is to understand the perception of patients with epilepsy and their families who were preparing to move from pediatric to adult healthcare system or had already moved. METHODS: A survey was distributed to patients/caregivers of patients with epilepsy through patient support groups in North America and in-person through the 2019 Epilepsy Awareness Day at Disneyland. Patients were required to be 12 years or older at the time of the survey and were divided into two groups: those between 12 and 17 years and those 18 years or older. Caregivers answered on behalf of patients who were unable to respond (e.g., intellectual disability). Major components of the survey included demographics, epilepsy details, quality and access to care received in pediatric and adult years, and questions regarding transition and readiness. RESULTS: Responses were received from 58 patients/caregivers of patients with epilepsy from Canada and the United States. In group A (patients between 12 and 17 years), none of the 17-year-old patients were spoken to about transition. Patients (caregivers) with epilepsy and intellectual and/or developmental disabilities (IDD) had less time to discuss important things during the transition/transfer phase than patients with normal intelligence. Finally, there was a statistically significant difference observed in access to specialty care reported in the adult years, compared to the years in the pediatric system. In the group B (patients 18 years and older) a) 35 % still visit their family doctor for epilepsy related treatment despite the majority being on 2 or more antiseizure medications (ASMs); b) 27 % of patients in this group were still being followed by their pediatric neurologist; c) one patient received care only through visits to the emergency department; d) only 4 % felt that they received clear instructions during transfer of care such as knowing the name of the adult healthcare practitioner and/or the name of the care institution they were being transferred to. CONCLUSIONS: This study highlights the lack of appropriate transition to adult healthcare system (AHCS) amongst an unselected group of patients with epilepsy in Canada and United States. An overwhelming majority of patients followed in the community and in academy centers were simply "transferred" to an adult health practitioner, or they remained under the care of pediatricians. Finally, most patients lack access to significant social and medical support after moving to the AHCS.
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Le contrôle bibliographique ouvert
DOI retrouvé dans Crossref DOI retrouvé ; titre concordant.
- Titre Crossref
- Transition in epilepsy – A pilot study with patients in and outside of academic centers
- Date Crossref
- 01/02/2024
- Éditeur
- Elsevier BV
- Type
- journal-article
Ce recoupement confirme des métadonnées liées au DOI. Il ne confirme ni la méthode ni les conclusions de l’étude, et il ne compte pas comme une seconde source scientifique indépendante.
Où se fait cette recherche
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Toronto Western Hospital Adult Genetic Epilepsy Program pays non établi dans la noticeÉtablissement de santé
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Krembil Brain Institute pays non établi dans la noticeStructure de recherche
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University of Toronto Toronto Western Hospital pays non établi dans la noticeUniversité ou école supérieure
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Albert Einstein College of Medicine Montefiore Medical Center pays non établi dans la noticeUniversité ou école supérieure
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Montefiore Medical Center pays non établi dans la noticeÉtablissement de santé
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Universidad de Antioquia pays non établi dans la noticeUniversité ou école supérieure
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Hôpital Necker-Enfants Malades pays non établi dans la noticeÉtablissement de santé
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Université Paris Cité Hôpital Universitaire Necker-Enfants Malades pays non établi dans la noticeUniversité ou école supérieure
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Assistance Publique – Hôpitaux de Paris pays non établi dans la noticeÉtablissement de santé
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Institut des Maladies Génétiques Imagine pays non établi dans la noticeStructure de recherche
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University of Antioquia Department of Pediatrics pays non établi dans la noticeUniversité ou école supérieure
Adult Genetic Epilepsy Program — Toronto Western Hospital, Krembil Brain Institute et Toronto Western Hospital — University of Toronto, avec 8 autres affiliations.
Une affiliation ne permet pas de déduire la nationalité d’un auteur.