目的:癫痫需要多个医疗保健专家的持续医疗护理,专业设施,和社区护理。在西班牙,没有标准化的癫痫治疗方法。这项研究的目的是通过探索通过西班牙国家医疗保健系统(NHS)的患者旅程中的关键步骤和障碍,来确定影响提供高质量护理的因素。
方法:使用神经学家的意见和经验进行了定性研究,护士,病人,和护理人员在讨论会议上分享。使用主题内容分析,相关的以目标为重点的陈述是根据讨论图中的预定问题编码的(即,关键步骤和障碍),并根据新出现的问题进行子编码。评估了主题饱和度和关键步骤/障碍的共同出现,以确定影响高质量护理交付的最相关因素。
结果:65名利益相关者参加了讨论会议(36名神经科医生,10名护士,10名患者,和9名护理人员)。确定了患者旅程的六个关键步骤:紧急护理,诊断,药物治疗,后续行动,转介,和介入治疗。其中,随访是影响高质量患者护理交付的最相关步骤,其次是药物治疗和诊断。急诊护理被认为是一个热点步骤,在整个患者旅程中都会产生影响。沟通(HCP之间以及HCP与患者之间)是在患者旅程的几个阶段提供高质量护理的障碍,包括药物治疗,后续行动,转介,和介入治疗。资源可用性是诊断(特别是确认)的障碍,药物治疗(药物可用性),和转诊(缺乏专业人员和专业中心,和长长的等待名单)。
结论:这是第一项研究,捕获了西班牙四个参与癫痫治疗的关键利益相关者的观点。我们提供了通过西班牙NHS的患者旅程的概述,并强调了从慢性角度改善以患者为中心的护理交付的机会。
结论:癫痫患者可能需要长期的医疗护理。在西班牙,护理由一系列专科和非专科中心提供。在这项研究中,一组西班牙神经学家,护士,患者和护理人员确定了影响癫痫患者在西班牙NHS旅程的每个阶段提供高质量护理的障碍.针对医疗保健提供者的特定癫痫培训,诊断和治疗患者的适当资源,医护人员和患者之间的良好沟通被认为是为癫痫患者提供高质量护理的重要因素.
OBJECTIVE: Epilepsy requires continuous medical attention from multiple healthcare specialists, specialized facilities, and community-based care. In Spain, there is no standardized approach to epilepsy care. The aim of this
study was to identify the factors impacting on the delivery of high-quality care by exploring key steps and barriers along the patient journey through the Spanish National Healthcare System (NHS).
METHODS: A qualitative
study was conducted using opinions and experiences of neurologists, nurses, patients, and caregivers shared in discussion meetings. Using thematic content analyses, relevant aim-focused statements were coded according to prespecified issues in a discussion map (i.e., key steps and barriers), and sub-coded according to emerging issues. Thematic saturation and co-occurrence of key steps/barriers were evaluated to identify the most relevant factors impacting on the delivery of high-quality care.
RESULTS: Sixty-five stakeholders took part in discussion meetings (36 neurologists, 10 nurses, 10 patients, and nine caregivers). Six key steps on the patient journey were identified: emergency care, diagnosis, drug therapy, follow-up, referral, and interventional treatment. Of these, follow-up was the most relevant step impacting on the delivery of high-quality patient care, followed by drug therapy and diagnosis. Emergency care was considered a hot-spot step with impact throughout the patient journey. Communication (among HCPs and between HCPs and patients) was a barrier to the delivery of high-quality care at several stages of the patient journey, including drug therapy, follow-up, referral, and interventional treatment. Resource availability was a barrier for diagnosis (especially for confirmation), drug therapy (drug availability), and referral (lack of professionals and specialized centers, and long waiting lists).
CONCLUSIONS: This is the first
study capturing perspectives of four key stakeholders involved in epilepsy care in Spain. We provide an overview of the patient journey through the Spanish NHS and highlight opportunities to improve the delivery of patient-centered care with a chronicity perspective.
CONCLUSIONS: Patients with epilepsy may require prolonged medical care. In Spain, care is provided by a range of specialist and non-specialist centers. In this
study, a team of Spanish neurologists, nurses, patients and caregivers identified barriers that affect the delivery of high-quality care for patients with epilepsy at each stage of their journey through the Spanish NHS. Specific epilepsy training for healthcare providers, appropriate resources for diagnosing and treating patients, and good communication between healthcare workers and patients were identified as important factors in providing high-quality care for patients with epilepsy.