Le Marne Fleur A, Towns Susan J, Gaskin Claire, Ho Jane, Baker Richard, Beavis Erin, Bye Anne M
Department of Neurology, Sydney Children's Hospital, Sydney, New South Wales, Australia.
Faculty of Medicine, University of New South Wales, Sydney, New South Wales, Australia.
J Paediatr Child Health. 2019 Jul;55(7):819-825. doi: 10.1111/jpc.14301. Epub 2018 Nov 25.
To implement and appraise a new model of care in terms of: patient experience, knowledge of epilepsy, readiness for transition and emotional and behavioural support in a new purpose-built facility for adolescents and young adults.
The new model of care included: upskilling of neurology staff in adolescent engagement and provision of group education sessions on epilepsy and mental health (MH), along with MH support, in a new purpose-built adolescent facility. Parameters examined pre- and post-attendance at the new clinic included: adolescent experience of service delivery, transition readiness, emotional and behavioural well-being, epilepsy knowledge and medication adherence.
A total of 45 adolescents (mean age 15.7 years) attended the new epilepsy clinic between February 2017 and December 2017. Adolescents felt significantly better informed following education in relation to epilepsy and driving, alcohol/street drugs and birth control/pregnancy. There was no significant improvement in self-reported medication adherence, transition readiness or mental well-being at follow-up. While MH education was ranked highly in terms of importance by adolescents and parents at baseline, attendance at MH education and engagement with MH support was low.
This paper documents what is important to young people with epilepsy regarding service delivery. The new adolescent service was well received. Based on feedback from adolescents and parents relating to the service, and the suboptimal uptake of MH supports, the model of care has been revised to reduce attendance burden on families and improve patient experience.
在为青少年和青年成年人新建的专门设施中，从患者体验、癫痫知识、过渡准备情况以及情感和行为支持等方面实施并评估一种新的护理模式。
新的护理模式包括：提升神经科工作人员与青少年沟通的技能，在新建的专门青少年设施中提供有关癫痫和心理健康（MH）的团体教育课程以及MH支持。在新诊所就诊前后检查的参数包括：青少年对服务提供的体验、过渡准备情况、情感和行为健康状况、癫痫知识以及药物依从性。
2017年2月至2017年12月期间，共有45名青少年（平均年龄15.7岁）到新的癫痫诊所就诊。青少年在接受有关癫痫与驾驶、酒精/街头毒品以及避孕/怀孕方面的教育后，感觉了解到的信息明显增多。随访时，自我报告的药物依从性、过渡准备情况或心理健康状况没有显著改善。虽然在基线时，青少年和家长对MH教育的重要性评价很高，但参加MH教育以及接受MH支持的比例较低。
本文记录了癫痫青少年在服务提供方面认为重要的内容。新的青少年服务受到好评。根据青少年和家长对该服务的反馈，以及对MH支持的接受程度不理想的情况，已对护理模式进行修订，以减轻家庭的就诊负担并改善患者体验。
