Department of Neurology, 5228University of Wisconsin-Madison, Madison, WI, USA.
Department of Biostatistics and Medical Informatics, 5228University of Wisconsin-Madison, Madison, WI, USA.
J Child Neurol. 2020 Nov;35(13):896-900. doi: 10.1177/0883073820938587. Epub 2020 Jul 23.
Ketogenic therapy is now an accepted treatment for pediatric and adult patients with medically refractory epilepsy. However, young adults treated with a ketogenic diet face unique challenges when transitioning to adult neurology providers. The variable acceptance of dietary therapy, paucity of nutritionists and adult neurology providers educated in dietary therapy, and lack of insurance coverage for dietary education may interfere with transition to adult care. In addition, patients in this life stage may just begin to independently seek medical care, cook meals, and manage medications, making strict dietary limitations difficult. In this worldwide study, we surveyed 191 pediatric and adult neurology providers who prescribe ketogenic dietary therapy for epilepsy. Our response rate was 39% with a total of 74 valid surveys received. Our goal was to identify perceived barriers that inhibit effective transition and successful continuation of dietary therapy during transition to adult care. We found that dietary therapy is a more accepted treatment of intractable epilepsy in children (84%) than adults (17%) in all geographic areas. Although half of pediatric neurology providers (50%) transition their young adult patients on dietary therapy to adult providers, only 23% have a documented transition plan or a formal transition protocol. Most (87%) pediatric providers who prescribe the ketogenic diet feel the lack of sufficient adult providers who prescribe dietary therapy as a barrier to transitioning adolescent and young adult patients.
生酮治疗目前已被广泛接受,可用于治疗药物难治性儿童及成人癫痫。然而,接受生酮饮食治疗的年轻患者在向成人神经科医生过渡时,面临着独特的挑战。饮食治疗的接受程度存在差异,营养师和接受过饮食治疗培训的成人神经科医生稀缺,以及饮食教育的保险覆盖不足,这些都可能干扰向成人护理的过渡。此外,处于这个人生阶段的患者可能刚开始独立寻求医疗护理、做饭和管理药物,因此严格的饮食限制可能会很困难。在这项全球研究中,我们调查了 191 名开出生酮饮食治疗癫痫处方的儿科和成人神经科医生。我们的回复率为 39%,共收到 74 份有效调查。我们的目标是确定阻碍有效过渡和成功延续饮食治疗的障碍。我们发现,在所有地理区域,饮食治疗都是更能接受的儿童(84%)而非成人(17%)顽固性癫痫的治疗方法。尽管一半的儿科神经科医生(50%)将接受饮食治疗的年轻成年患者转介给成人医生,但只有 23%有书面的过渡计划或正式的过渡方案。大多数(87%)开出生酮饮食处方的儿科医生认为,缺乏足够的开饮食治疗处方的成人医生,是阻碍将青少年和年轻成年患者转介给成人的障碍。