Bolte Jasmin, Dilger Elise-Marie, Brütt Anna Levke
Department für Versorgungsforschung, Fakultät VI Medizin und Gesundheitswissenschaften, Carl von Ossietzky Universität Oldenburg, Ammerländer Heerstr. 114-118, 26129, Oldenburg, Deutschland.
Institut und Poliklinik für Medizinische Psychologie, Universitätsklinikum Hamburg-Eppendorf, Hamburg, Deutschland.
Nervenarzt. 2024 Dec;95(12):1116-1123. doi: 10.1007/s00115-024-01752-z. Epub 2024 Oct 29.
Guidelines serve as practice-based decision support and recommend the use of standardized instruments to measure functional capacity in individuals with multiple sclerosis (MS). However, the extent to which a person's functioning is captured by these instruments is unclear.
The aim of this study is to link the content of the MS disease guideline with the International Classification of Functioning, Disability and Health (ICF) in order to capture the distribution of the content on the functional domains and contextual factors and to uncover existing gaps.
Instruments of the S2k guideline "Diagnosis and therapy of multiple sclerosis, neuromyelitis optica spectrum diseases and MOG-IgG-associated diseases", which were available free of charge in German or English and designed for adult people, were included. The instruments were classified into their meaningful concepts (meaningful concepts = MCs) and subsequently coded using standardized ICF rules by two raters.
The 23 included instruments contained 351 items and 718 MCs. Of these, 663 MCs could be linked to the ICF according to the coding rules. Of these, 51% (340 MCs) related to body functions, 44% (291 MCs) to the activity and participation component, and 5% (32 MCs) to environmental factors. The most frequently coded chapter was mobility (d4) with 201 MCs. Interrater agreement was k = 0.79.
The linking of the guideline-recommended instruments to the ICF shows that the instruments cover different themes. The area of environmental factors is underrepresented. The ICF linkage reveals a broad spectrum of functioning covered by the guideline-recommended instruments and facilitates the selection of appropriate instruments for the affected persons.
指南作为基于实践的决策支持工具，推荐使用标准化工具来测量多发性硬化症（MS）患者的功能能力。然而，这些工具对个体功能的捕获程度尚不清楚。
本研究旨在将MS疾病指南的内容与《国际功能、残疾和健康分类》（ICF）相联系，以了解功能领域和背景因素方面内容的分布情况，并发现存在的差距。
纳入了S2k指南“多发性硬化症、视神经脊髓炎谱系疾病和MOG-IgG相关疾病的诊断与治疗”中的工具，这些工具以德文或英文免费提供，且针对成年人设计。将这些工具分类为有意义的概念（有意义的概念=MCs），随后由两名评分者使用标准化的ICF规则进行编码。
纳入的23种工具包含351个条目和718个MCs。其中根据编码规则，663个MCs可与ICF相联系。其中，51%（340个MCs）与身体功能相关，44%（291个MCs）与活动和参与部分相关，5%（32个MCs）与环境因素相关。编码最频繁的章节是活动能力（d4），有201个MCs。评分者间一致性为k = 0.79。
将指南推荐的工具与ICF相联系表明，这些工具涵盖了不同主题。环境因素领域的代表性不足。ICF联系揭示了指南推荐工具所涵盖的广泛功能范围，并有助于为受影响者选择合适的工具。
