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基于家庭的音乐疗法对早期和中期肌萎缩侧索硬化症患者延髓和呼吸功能的支持——一项可行性研究的方案与结果

Home-Based Music Therapy to Support Bulbar and Respiratory Functions of Persons with Early and Mid-Stage Amyotrophic Lateral Sclerosis-Protocol and Results from a Feasibility Study.

作者信息

Apreleva Kolomeytseva Alisa T, Brylev Lev, Eshghi Marziye, Bottaeva Zhanna, Zhang Jufen, Fachner Jörg C, Street Alexander J

机构信息

ALSMusicTherapy.Org, 115419 Moscow, Russia.

Bujanov Moscow City Clinical Hospital, 115419 Moscow, Russia.

出版信息

Brain Sci. 2022 Apr 13;12(4):494. doi: 10.3390/brainsci12040494.

Abstract

Respiratory failure, malnutrition, aspiration pneumonia, and dehydration are the precursors to mortality in ALS. Loss of natural communication is considered one of the worst aspects of ALS. This first study to test the feasibility of a music therapy protocol for bulbar and respiratory rehabilitation in ALS employs a mixed-methods case study series design with repeated measures. Newly diagnosed patients meeting the inclusion criteria were invited to participate, until the desired sample size ( = 8) was achieved. The protocol was delivered to participants in their homes twice weekly for six weeks. Individualised exercise sets for independent practice were provided. Feasibility data (recruitment, retention, adherence, tolerability, self-motivation and personal impressions) were collected. Bulbar and respiratory changes were objectively measured. Results. A high recruitment rate (100%), a high retention rate (87.5%) and high mean adherence to treatment (95.4%) provide evidence for the feasibility of the study protocol. The treatment was well tolerated. Mean adherence to the suggested independent exercise routine was 53%. The outcome measurements to evaluate the therapy-induced change in bulbar and respiratory functions were defined. Findings suggest that the protocol is safe to use in early- and mid-stage ALS and that music therapy was beneficial for the participants' bulbar and respiratory functions. Mean trends suggesting that these functions were sustained or improved during the treatment period were observed for most outcome parameters: Maximal Inspiratory Pressure, Maximal Expiratory Pressure, Peak Expiratory Flow, the Center for Neurologic Study-Bulbar Function Scale speech and swallowing subscales, Maximum Phonation Time, Maximum Repetition Rate-Alternating, Maximum Repetition Rate-Sequential, Jitter, Shimmer, NHR, Speaking rate, Speech-pause ratio, Pause frequency, hypernasality level, Time-to-Laryngeal Vestibule Closure, Maximum Pharyngeal Constriction Area, Peak Position of the Hyoid Bone, Total Pharyngeal Residue C24area. Conclusion. The suggested design and protocol are feasible for a larger study, with some modifications, including aerodynamic measure of nasalance, abbreviated voice sampling and psychological screening.

摘要

呼吸衰竭、营养不良、吸入性肺炎和脱水是肌萎缩侧索硬化症(ALS)患者死亡的先兆。自然交流能力丧失被认为是ALS最糟糕的方面之一。这项首次测试音乐疗法方案对ALS延髓和呼吸康复可行性的研究采用了带有重复测量的混合方法案例系列设计。邀请符合纳入标准的新诊断患者参与,直至达到所需样本量(n = 8)。该方案每周两次在参与者家中实施,为期六周。提供了个性化的练习集供自主练习。收集了可行性数据(招募、留存、依从性、耐受性、自我激励和个人印象)。对延髓和呼吸变化进行了客观测量。结果。高招募率(100%)、高留存率(87.5%)和高平均治疗依从性(95.4%)为研究方案的可行性提供了证据。该治疗耐受性良好。对建议的自主锻炼常规的平均依从性为53%。定义了评估治疗引起的延髓和呼吸功能变化的结局测量指标。研究结果表明,该方案在ALS早期和中期使用是安全的,并且音乐疗法对参与者的延髓和呼吸功能有益。大多数结局参数观察到平均趋势表明这些功能在治疗期间得以维持或改善:最大吸气压力、最大呼气压力、呼气峰值流量、神经学研究中心延髓功能量表言语和吞咽子量表、最大发声时间、最大重复率交替、最大重复率顺序、抖动、闪烁、噪声谐波比、说话速率、言语停顿比、停顿频率、鼻音过重水平、喉前庭关闭时间、最大咽缩窄面积、舌骨峰值位置、总咽残留C24面积。结论。建议的设计和方案经过一些修改后适用于更大规模的研究,包括鼻漏气的空气动力学测量、简化的语音采样和心理筛查。

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