Vacca Mariacarolina, Fernandes Mariana, Veronese Lorenzo, Ballesio Andrea, Cerminara Caterina, Galasso Cinzia, Mazzone Luigi, Lombardo Caterina, Mercuri Nicola Biagio, Liguori Claudio
Department of Psychology, Sapienza University of Rome, 00185 Rome, Italy.
Department of Systems Medicine, University of Rome Tor Vergata, Montpellier Street 1, 00133 Rome, Italy.
Brain Sci. 2023 Dec 24;14(1):21. doi: 10.3390/brainsci14010021.
The transition to adult care for patients with epilepsy is a complicated clinical issue associated with adverse outcomes, including non-adherence to treatment, dropout of medical care, and worse prognosis. Moreover, youngsters with epilepsy are notably prone to emotional, psychological, and social difficulties during the transition to adulthood. Transition needs depend on the type of epilepsy and the epileptic syndrome, as well as on the presence of co-morbidities. Having a structured transition program in place is essential to reduce poor health consequences. A key strategy to optimize outcomes involves the use of transition readiness and associated factors assessment to implement the recognition of vulnerability and protective aspects, knowledge, and skills of these patients and their parents. Therefore, this study aims to provide a comprehensive framework of clinical and psychosocial aspects associated with the transition from pediatric to adult medical care of patients with epilepsy.
Measures examining different aspects of transition readiness and associated clinical, socio-demographic, psychological, and emotional factors were administered to 13 patients with epilepsy (M = 22.92, SD = 6.56) with (n = 6) or without (n = 7) rare diseases, and a respective parent (M = 56.63, SD = 7.36).
patients showed fewer problems in tracking health issues, appointment keeping, and pharmacological adherence as well as low mood symptoms and moderate resiliency. Moreover, they referred to a low quality of sleep. Notably, parents of patients with rare diseases reported a lower quality of sleep as compared to the other group of parents.
Increasing awareness around transition readiness is essential to promote self-management skills of patients with epilepsy and their parents. Anticipating the period of transition could be beneficial, especially to prevent problematic sleep patterns and promote independence in health care management. Parents of patients with epilepsy and rare diseases should be monitored for their mental status which can affect patients' well-being.
癫痫患者向成人护理的过渡是一个复杂的临床问题，会带来不良后果，包括治疗依从性差、医疗护理中断以及预后较差。此外，癫痫青少年在向成年期过渡期间尤其容易出现情绪、心理和社会方面的困难。过渡需求取决于癫痫的类型和癫痫综合征，以及合并症的存在情况。制定结构化的过渡计划对于减少不良健康后果至关重要。优化结果的一个关键策略是利用过渡准备情况及相关因素评估来识别这些患者及其父母的脆弱性和保护因素、知识和技能。因此，本研究旨在提供一个与癫痫患者从儿科医疗护理向成人医疗护理过渡相关的临床和心理社会方面的综合框架。
对13名癫痫患者（平均年龄M = 22.92，标准差SD = 6.56）进行了检查过渡准备情况不同方面以及相关临床、社会人口统计学、心理和情绪因素的测量，其中6名患者患有罕见病，7名患者未患罕见病，同时还对各自的一位家长（平均年龄M = 56.63，标准差SD = 7.36）进行了测量。
患者在跟踪健康问题、按时就诊和药物依从性方面问题较少，情绪症状较轻且心理弹性适中。此外，他们提到睡眠质量较差。值得注意的是，与另一组家长相比，患有罕见病患者的家长报告的睡眠质量更低。
提高对过渡准备情况的认识对于提升癫痫患者及其父母的自我管理技能至关重要。提前预期过渡阶段可能会有所帮助，特别是有助于预防有问题的睡眠模式并促进医疗保健管理方面的独立性。癫痫且患有罕见病患者的家长的心理状态应受到监测，因为这可能会影响患者的幸福感。
