Krause Nicole, Riemann-Lorenz Karin, Rahn Anne Christin, Pöttgen Jana, Köpke Sascha, Meyer Björn, Thale Frithjof, Temmes Herbert, van de Loo Markus, Gold Stefan M, Heesen Christoph
Institute of Neuroimmunology and Multiple Sclerosis (INIMS), University Medical Center Hamburg-Eppendorf, Martinistraße 52, 20246 Hamburg, Germany.
Institute of Neuroimmunology and Multiple Sclerosis (INIMS), University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Ther Adv Neurol Disord. 2022 Sep 6;15:17562864221118729. doi: 10.1177/17562864221118729. eCollection 2022.
A multiple sclerosis (MS) diagnosis urges decision-making on immunotherapies, while persons with MS (PwMS) need to develop a coping concept in parallel. At this stage, PwMS ask how they themselves may contribute to controlling the disease. Evidence suggests that maintaining a healthy lifestyle (e.g. physical activity and stress management) is a key factor for healthy aging and preserving activity, while data on MS are complex.
Following the Medical Research Council framework, this study aimed to develop and investigate the feasibility of a new digital health application that conveys evidence-based patient information about lifestyle factors in MS and engages PwMS in relevant behaviour change techniques.
Based on a digital health application promoting lifestyle management in breast cancer survivors, an MS-specific adaptation ('levidex') was developed. Feasibility was tested with 15 PwMS and eight MS experts. Subsequently, a six-week pilot study with eight PwMS was conducted. All participants provided feedback on practicability and acceptability via a questionnaire and took part in a semi-structured telephone interview. Levidex was revised after each test phase.
The final levidex tool includes 16 modules, 177 references and several other functions. Feasibility results showed that PwMS and MS experts perceived levidex as understandable (14 out of 15; 6 out of 8), trustworthy (15 out of 15; 8 out of 8), and relevant (10 out of 15; 8 out of 8). Interviews revealed potential for improvement regarding the length and complexity of some content. Piloting of the revised version confirmed good feasibility and high acceptance. Most participants felt inspired to initiate (7 out of 8) or had already implemented (5 out of 8) lifestyle changes after working with levidex.
Results suggest that levidex is feasible and well-accepted by PwMS and MS experts. It might be a useful tool to support PwMS in adapting to their diagnosis and initiating health-promoting lifestyle changes.
多发性硬化症（MS）的诊断促使人们对免疫疗法做出决策，而MS患者（PwMS）需要同时制定应对方案。在此阶段，PwMS会询问他们自己如何有助于控制疾病。有证据表明，保持健康的生活方式（如体育锻炼和压力管理）是健康老龄化和保持活动能力的关键因素，而关于MS的数据则较为复杂。
遵循医学研究理事会的框架，本研究旨在开发并调查一种新的数字健康应用程序的可行性，该应用程序可传达基于证据的关于MS生活方式因素的患者信息，并促使PwMS采用相关的行为改变技巧。
基于一款促进乳腺癌幸存者生活方式管理的数字健康应用程序，开发了一款针对MS的改编版（“levidex”）。对15名PwMS和8名MS专家进行了可行性测试。随后，对8名PwMS进行了为期六周的试点研究。所有参与者通过问卷对实用性和可接受性提供反馈，并参加了半结构化电话访谈。在每个测试阶段后对levidex进行修订。
最终的levidex工具包括16个模块、177条参考文献和其他一些功能。可行性结果表明，PwMS和MS专家认为levidex易于理解（15人中有14人；8人中有6人）、值得信赖（15人中有15人；8人中有8人）且相关（15人中有10人；8人中有8人）。访谈显示，某些内容的长度和复杂性还有改进的空间。修订版的试点证实了良好的可行性和高接受度。大多数参与者在使用levidex后受到启发开始（8人中有7人）或已经实施（8人中有5人）了生活方式的改变。
结果表明，levidex是可行的，并且被PwMS和MS专家所接受。它可能是一种有用的工具，可支持PwMS适应他们的诊断并启动促进健康的生活方式改变。
