Department of Internal MedicineUniversity of MichiganAnn ArborMIUSA.
Division of GastroenterologyMassachusetts General HospitalBostonMAUSA.
Hepatol Commun. 2020 Nov 17;5(2):168-176. doi: 10.1002/hep4.1621. eCollection 2021 Feb.
The complexity of cirrhosis requires patients and their caregivers to be well educated to improve outcomes. Data are lacking regarding how to best educate patients and their caregivers in the setting of cirrhosis. Our aim is to understand (both through existing literature and by asking patients and their caregivers) how patients learn about their disease, barriers in their education and disease management, and self-management strategies. We performed a structured search of published articles in PubMed (1973 to 2020) using keywords "cirrhosis" plus "barriers", "education", "self-management", or "self-care". Additionally, we conducted a focus group of a representative sample of patients and their caregivers to understand how knowledge about cirrhosis is found and incorporated into self-management. Of 504 returned manuscripts, 11 pertained to barriers in cirrhosis, interventions, or educational management. Barriers are well documented and include disease complexity, medication challenges, comorbid conditions, and lack of effective education. However, data regarding addressing these barriers, especially effective educational interventions, are scarce. Current strategies include booklets and videos, patient empowerment, and in-person lectures. Without widespread use of these interventions, patients are left with suboptimal knowledge about their disease, a sentiment unanimously echoed by our focus group. Despite linkage to subspecialty care and consistent follow-up, patients remain uncertain about their disease origin, prognosis, and therapies to manage symptoms. It is clear that more data are needed to assess effective strategies to address unmet educational needs. Existing strategies need to be blended and improved, their effectiveness evaluated, and the results distributed widely.
肝硬化的复杂性要求患者及其护理人员接受良好的教育，以改善治疗效果。目前缺乏关于如何在肝硬化环境中为患者及其护理人员提供最佳教育的相关数据。我们的目的是了解（通过现有文献以及询问患者及其护理人员）患者如何了解自身疾病，了解他们在教育和疾病管理中遇到的障碍以及自我管理策略。我们在 PubMed 中使用“肝硬化”加“障碍”、“教育”、“自我管理”或“自我护理”等关键词对已发表的文章进行了系统搜索（1973 年至 2020 年）。此外，我们还对具有代表性的患者及其护理人员进行了焦点小组讨论，以了解有关肝硬化的知识是如何被发现并纳入自我管理的。在 504 篇返回的论文中，有 11 篇涉及肝硬化的障碍、干预或教育管理。障碍已得到充分证实，包括疾病的复杂性、药物治疗的挑战、合并症和缺乏有效的教育。然而，有关解决这些障碍的资料，特别是有效的教育干预措施的数据却很少。目前的策略包括小册子和视频、患者赋权以及现场讲座。由于这些干预措施没有得到广泛应用，患者对自身疾病的了解仍不够理想，这一观点在我们的焦点小组中得到了一致的回应。尽管与亚专科治疗相关联并进行了持续的随访，但患者仍然对疾病的起源、预后和管理症状的治疗方法感到不确定。显然，需要更多的数据来评估解决未满足的教育需求的有效策略。需要混合和改进现有的策略，评估其有效性，并广泛传播结果。
