用于神经肌肉疾病的传统疗法以及补充或替代疗法的使用频率和满意度。

Frequency and satisfaction of conventional and complementary or alternative therapies for neuromuscular disorders.

作者信息

Böhne Lene Änne, Wirner Corinna, Schoser Benedikt, Schröter Carsten, Baum Petra

机构信息

Department and Outpatient Department of Neurology, University of Leipzig (UKL), Liebigstraße 20, 04103, Leipzig, Germany.

Department of Neurology, Friedrich-Baur-Institute, Ludwig-Maximilians-University, Ziemssenstraße 1, 80336, Munich, Germany.

出版信息

Neurol Res Pract. 2023 Oct 12;5(1):53. doi: 10.1186/s42466-023-00281-5.

DOI:10.1186/s42466-023-00281-5

PMID:37822002

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10568802/

Abstract

BACKGROUND

Causal therapies are not yet available for most neuromuscular diseases. Additionally, data on the use of complementary or alternative therapies (CAM) in patients groups with a variety of different neuromuscular diseases are rare. This retrospective cross-sectional study aims to record the frequency of use and satisfaction of conventional therapies and complementary or alternative medicine (CAM) in patients with neuromuscular disorders in order to compare them afterwards.

METHODS

Patients from the University of Leipzig (Department and Outpatient Department of Neurology), the Friedrich-Baur-Institute (Department of Neurology), the Hoher Meißner Clinic (Department of Neurology) and the German Society for Muscular Diseases (DGM e.V.) were included. The focus of this study has been on patients with chronic neuromuscular diseases. Our data are based on standardised questionnaires in analogue form from three German neuromuscular centres and in digital form from the official website of the German Society for Muscular Diseases. Therapy satisfaction was assessed with the Patient Evaluation of Global Response (PEGR) ranking scale (very satisfactory + 2 to very unsatisfactory - 2).

RESULTS

Of 192 questionnaires analysed, the most common diagnoses were spinal muscular atrophy (n = 42; 21.9%), muscular dystrophies (n = 41; 21.4%) and myotonic dystrophies (n = 38; 19.8%). More than half (n = 112; 58.3%) used both conventional and CAM treatments. Physiotherapy (n = 165) was used most frequently within all treatments with conventional manual (PEGR 1.25, p = 0.013; CI 95%) and aquatic therapy (PEGR 1.3, p = 0.038) showing significantly higher satisfaction compared to therapy on training equipment. Less-used therapies such as psychotherapy (n = 53; PEGR 1.2) were also satisfactory. Within CAM, massages (n = 96) were the most reported and meditation (PEGR 1.5) was best rated. Massage therapy was significantly more satisfactory than progressive muscle relaxation (p = 0.003) and chiropractic treatment (p = 0.036). Chiropractic treatment (PEGR - 0.1) was rated most negatively. No significant differences were found between the group of conventional therapies and CAM users regarding social and disease-dependent factors.

CONCLUSIONS

Treatment with conventional therapy (manual, aquatic therapy) and some CAM therapies can be recommended if adequately indicated.

摘要

背景

对于大多数神经肌肉疾病，尚无因果性治疗方法。此外，关于各种不同神经肌肉疾病患者群体使用补充或替代疗法（CAM）的数据很少。这项回顾性横断面研究旨在记录神经肌肉疾病患者使用传统疗法以及补充或替代医学（CAM）的频率和满意度，以便随后进行比较。

方法

纳入了来自莱比锡大学（神经病学系和门诊）、弗里德里希 - 鲍尔研究所（神经病学系）、霍赫迈斯纳诊所（神经病学系）以及德国肌肉疾病协会（DGM e.V.）的患者。本研究重点关注慢性神经肌肉疾病患者。我们的数据基于来自三个德国神经肌肉中心的模拟形式标准化问卷以及来自德国肌肉疾病协会官方网站的数字形式问卷。使用患者总体反应评估（PEGR）排名量表（非常满意 +2 至非常不满意 -2）评估治疗满意度。

结果

在分析的192份问卷中，最常见的诊断是脊髓性肌萎缩（n = 42；21.9%）、肌营养不良（n = 41；21.4%）和强直性肌营养不良（n = 38；19.8%）。超过一半（n = 112；58.3%）的患者同时使用传统疗法和CAM疗法。在所有传统治疗中，物理治疗（n = 165）使用最为频繁，其中传统手法治疗（PEGR 1.25，p = 0.013；95%置信区间）和水疗（PEGR 1.3，p = 0.038）的满意度明显高于训练设备治疗。较少使用的疗法如心理治疗（n = 53；PEGR 1.2）也令人满意。在CAM疗法中，按摩（n = 96）是报告最多的，冥想（PEGR 1.5）评分最高。按摩疗法的满意度明显高于渐进性肌肉松弛（p = 0.003）和脊椎按摩治疗（p = 0.036）。脊椎按摩治疗（PEGR -0.1）的评分最负面。在传统疗法组和CAM疗法使用者之间，在社会和疾病相关因素方面未发现显著差异。