Hohl Melissa, Willacker Lina, Raiser Theresa Marie, Rosenfelder Martin Justinus, Kuehlmeyer Katja, Bassi Marta, Comanducci Angela, Valota Chiara, Sitt Jacobo Diego, Bender Andreas
Institute for Medical Information Processing, Biometry, and Epidemiology - IBE, LMU Munich, Munich, Germany.
Chair of Public Health and Health Services Research, LMU Munich, Pettenkofer School of Public Health, Munich, Germany.
Health Expect. 2024 Dec;27(6):e70097. doi: 10.1111/hex.70097.
Disorders of consciousness (DoC) refers to a group of clinical conditions of altered consciousness. To improve their diagnosis and prognosis, multimodal assessment can be of great importance. Informal caregivers of people with DoC who are confronted with new technologies as such can benefit from interventions to expand their health literacy, i.e., the ability to use information to make health decisions for oneself and others.
We developed an information brochure on multimodal assessment for DoC in a participatory process, with decisions made by a steering group. The process was based on a methodological framework for the development of patient decision aids that built on the International Patient Decision Aid Standards (IPDAS).
On the background of a broad variety of needs, the priority was to focus on the explanation of multimodal testing and provide information about its uncertainty. Its development aimed at enhancing informal caregivers' understanding of implications of results from multimodal assessment and its relevance for prognosis. It should avoid the portrayal of information that could lead to the impression of false hope or suboptimal rehabilitation care. Informal caregivers rated its usability and acceptability highly, though they preferred less technical language.
The participatory process was crucial to the project. Future studies should investigate the effectiveness of the brochure in fostering informal caregivers' health literacy.
Informal caregivers of people with DoC were deliberately included in the steering group and they participated in a field test of the prototype brochure.
意识障碍（DoC）是指一组意识改变的临床状况。为改善其诊断和预后，多模式评估可能非常重要。面对此类新技术的意识障碍患者的非正式照料者可从旨在提高其健康素养（即利用信息为自己和他人做出健康决策的能力）的干预措施中受益。
我们在一个参与过程中编写了一份关于意识障碍多模式评估的信息手册，由一个指导小组做出决策。该过程基于一个以国际患者决策辅助标准（IPDAS）为基础的患者决策辅助工具开发方法框架。
在广泛多样的需求背景下，重点是侧重于解释多模式检测并提供有关其不确定性的信息。其编写目的是增强非正式照料者对多模式评估结果的影响及其与预后相关性的理解。应避免呈现可能给人造成虚假希望或康复护理不佳印象的信息。非正式照料者对其可用性和可接受性评价很高，不过他们更喜欢语言不那么专业的内容。
参与过程对该项目至关重要。未来研究应调查该手册在提高非正式照料者健康素养方面的有效性。
意识障碍患者的非正式照料者被特意纳入指导小组，并参与了手册原型的实地测试。
