Department of Clinical Microbiology, Clinical Center for Emerging and Vector-Borne Infections, Odense University Hospital, J.B. Winsloews Vej 21, Entrance 245, 5000, Odense C, Denmark.
Department of Psychology, University of Southern Denmark, Odense, Denmark.
BMC Prim Care. 2024 Oct 23;25(1):379. doi: 10.1186/s12875-024-02624-w.
Lyme borreliosis is by far the most common vector-borne infection in Western Europe. The most severe manifestation of Lyme borreliosis is Lyme neuroborreliosis (LNB). In LNB symptoms vary from mild to severe and may include late complications that involve both physical and/or neurocognitive constraints. An estimated 25-28% of the LNB population suffers from late complications. This study investigates patient and relative perspectives on everyday life with LNB symptoms, diagnosis, and treatment to identify areas for improvement of healthcare.
A focus group was conducted at Odense University Hospital, Denmark. The focus group comprised 16 participants, nine patients diagnosed with LNB who had been treated at the Clinical Center for Emerging and Vector-borne Infections, and seven relatives of the patients' choice. The focus group lasted 2 ½ hours and was audio recorded as well as documented in field notes.
Data analysis was grounded in the conceptual framework of critical psychology and resulted in three main themes: (1) Burden of LNB symptoms in everyday life, (2) A break in the conduct of everyday life caused by LNB and (3) Need for transparent pathways to specialist knowledge.
Before diagnosis and treatment, each patient reported varying degrees of non-treatable pain, and cognitive and/or musculoskeletal symptoms. Visible physical symptoms were rare. All patients had experienced that their bodily symptoms remained unaddressed throughout numerous encounters with the healthcare system. The course of LNB comes with a break in patients' everyday lives and self-understandings affecting their ability to work and manage everyday activities. Patients and relatives strongly recommend a specialised LNB clinic.
莱姆病是迄今为止西欧最常见的虫媒传染病。莱姆病最严重的表现是莱姆神经Borreliosis（LNB）。在 LNB 中，症状从轻度到重度不等，可能包括涉及身体和/或神经认知限制的晚期并发症。据估计，LNB 人群中有 25-28%患有晚期并发症。本研究调查了患者及其亲属对 LNB 症状、诊断和治疗的日常生活的看法，以确定改善医疗保健的领域。
在丹麦奥胡斯大学医院进行了焦点小组讨论。焦点小组由 16 名参与者组成，其中 9 名患者被诊断患有 LNB，并在临床新兴和虫媒传染病中心接受治疗，还有 7 名是患者选择的亲属。焦点小组持续了 2 个半小时，全程录音，并记录在实地笔记中。
数据分析基于批判心理学的概念框架，得出了三个主要主题：（1）LNB 症状对日常生活的负担，（2）LNB 导致日常生活的中断，（3）对透明专业知识途径的需求。
在诊断和治疗之前，每位患者都报告了不同程度的无法治疗的疼痛、认知和/或肌肉骨骼症状。可见的身体症状很少见。所有患者都经历过，他们的身体症状在与医疗保健系统的多次接触中仍然没有得到解决。LNB 的病程会导致患者日常生活和自我理解的中断，影响他们的工作和日常活动能力。患者和亲属强烈建议设立专门的 LNB 诊所。
