Mayer-Huber Sandra, Kircher Alissa, Eberhartinger Maria, Stojanov Silvia, Behrends Uta
Klinik und Poliklinik für Kinder- und Jugendmedizin, Klinikum rechts der Isar der Technischen Universität München, München, Germany.
Gesundheitswesen. 2024 Oct;86(10):614-624. doi: 10.1055/a-2323-4108. Epub 2024 May 10.
This scoping review aims to provide an overview of previously published treatment strategies that are multimodal, rather than purely drug-based and may be considered for home- or bedbound ME/CFS patients. Thus, the focus lies upon the analyses of telemedicine as well as home treatment elements. In addition, the evaluation and assessment methods used in these studies will be further discussed.
Using the scoping review method, a literature analysis was conducted resulting in a total of 14 publications which met the predefined criteria. Inclusion was based on models applicable to housebound individuals with ME/CFS, focusing on social medicine and psychological support services rather than individual drug strategies.
The analysis demonstrated that the appropriate treatment methods were predominantly home visits (n=5) or a telemedicine format (n=7). Studies which used alternative settings were included if conversion to a telemedicine format was viable. The important factors highlighted in several studies (n=8), when considering this patient group, were individualisation and flexibility of the treatment methods, and thus the ability to address the day-to-day levels of impairment. The explicit involvement of families in the treatment plan were described in a total of six studies. In ten articles, the treatment concept was additionally evaluated, predominantly using questionnaires (n=7), whilst the questionnaires used were not consistent. Qualitative evaluations were invariably conducted using Brown and Clarke's thematic analysis (n=3).
Publications on multimodal treatment strategies for homebound ME/CFS patients are rare. However approaches using home visits or telemedicine are described. The majority of identified publications addressed the need for individualised as well as flexible patient care, whilst some were dedicated to the added value of involving the patients' family. The data outline the specific challenges associated with the care of severely affected ME/CFS patients that should also be considered in the context of research.
本综述旨在概述先前发表的多模式治疗策略，而非单纯基于药物的策略，这些策略可用于居家或卧床的肌痛性脑脊髓炎/慢性疲劳综合征（ME/CFS）患者。因此，重点在于对远程医疗以及家庭治疗要素的分析。此外，还将进一步讨论这些研究中使用的评估和评价方法。
采用综述方法进行文献分析，共筛选出14篇符合预定义标准的出版物。纳入标准基于适用于居家ME/CFS患者的模式，侧重于社会医学和心理支持服务，而非个体药物治疗策略。
分析表明，合适的治疗方法主要是家访（n = 5）或远程医疗形式（n = 7）。如果可以转换为远程医疗形式，则纳入使用其他设置的研究。在考虑该患者群体时，多项研究（n = 8）强调的重要因素是治疗方法的个性化和灵活性，以及应对日常功能障碍水平的能力。共有六项研究描述了家庭明确参与治疗计划的情况。在十篇文章中，还对治疗概念进行了评估，主要使用问卷（n = 7），但使用的问卷并不一致。定性评估均采用布朗和克拉克的主题分析法（n = 3）。
关于居家ME/CFS患者多模式治疗策略的出版物很少。然而，描述了家访或远程医疗的方法。大多数已确定的出版物都提到了个性化和灵活的患者护理的必要性，而一些则致力于患者家庭参与的附加价值。数据概述了与严重受影响的ME/CFS患者护理相关的具体挑战，在研究背景下也应予以考虑。
