Multimodale Behandlungsstrategien für hausgebundene Menschen mit schwerem ME/CFS: ein Scoping Review

Zusammenfassung

Zielsetzung Dieser Scoping Review zielt darauf ab, einen Überblick über bisher publizierte Behandlungsstrategien zu geben, die multimodaler und nicht rein medikamentöser Art sind und für haus- oder bettgebundene ME/CFS-Patienten in Frage kommen. Der Schwerpunkt liegt somit auf der Analyse von telemedizinischen und aufsuchenden Behandlungselementen. Darüber hinaus werden die in den betrachteten Studien verwendeten Evaluations- und Auswertungsmethoden herausgearbeitet.

Methode Nach einer Literaturrecherche gemäß der Scoping Review-Methode und unter Verwendung von vordefinierten Kriterien wurden 14 Publikationen eingeschlossen und ausgewertet. Voraussetzung für den Einschluss waren Modelle, die auf hausgebundene Personen mit ME/CFS anwendbar sind und sich auf sozialmedizinische, psychologische Unterstützungsangebote und nicht auf einzelne medikamentöse Strategien beziehen.

Ergebnis Die als geeignet bewerteten Behandlungen fanden überwiegend in einem aufsuchenden (Hausbesuche) (n=5) oder telemedizinischen (n=7) Format statt. Studien mit einem anderen Setting wurden aus dem Grund einbezogen, dass das beschriebene Modell in ein telemedizinisches Konzept umwandelbar wäre. Darüber hinaus wurden in mehreren Studien (n=8) Individualisierung und Flexibilität der Behandlungsmethode - und somit die Möglichkeit, auf das tagesaktuelle Ausmaß der Beeinträchtigung eingehen zu können - ebenfalls als wichtige Faktoren im Umgang mit dieser Patientengruppe herausgearbeitet. In sechs Studien wurde eine zusätzliche, ausdrückliche Einbindung der Familien in das Behandlungskonzept beschrieben. In zehn Artikeln wurde die Evaluation eines Behandlungskonzepts beschrieben, meist unter Verwendung von Fragebögen (n=7). Es wurde keine einheitliche Verwendung spezifischer Fragebögen festgestellt. Qualitative Auswertungen wurden durchweg mittels thematischer Analyse nach Braun und Clarke durchgeführt (n=3).

Schlussfolgerung Die Gesamtzahl der Publikationen, die sich mit multimodalen Behandlungsstrategien für hausgebundene ME/CFS-Patienten beschäftigen, ist gering. Es finden sich jedoch aufsuchende und telemedizinische Ansätze. Die Mehrzahl der identifizierten Publikationen adressieren die Notwendigkeit einer individualisierten, flexiblen Versorgung. Einige widmen sich dem möglichen Mehrgewinn durch explizite Einbindung der Angehörigen. Die recherchierten Daten belegen die besonderen Herausforderungen bei der Versorgung von schwer betroffenen ME/CFS-Patienten und implizieren, dass diese Besonderheiten auch im Forschungskontext berücksichtigt werden müssen.

Abstract

Purpose 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.

Methods 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.

Results 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).

Conclusion 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.

Schlüsselwörter

ME/CFS - Myalgische Enzephalomyelitis / Chronisches Fatigue-Syndrom - hausgebunden - bettlägerig - multimodale Behandlungsstrategien

Keywords

ME/CFS - myalgic encephalomyelitis/chronic fatigue syndrome - homebound - bedridden - multimodal treatment strategies

Publication History

Accepted Manuscript online:
10 May 2024

Article published online:
24 July 2024

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