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音乐治疗与黏多糖贮积症 Sanfilippo 综合征:三则案例的心理与生理变量分析

Music therapy and Sanfilippo syndrome: an analysis of psychological and physiological variables of three case studies.

机构信息

Department of Psychology, Faculty of Psychology and Education, University of Deusto, Bilbao, Spain.

出版信息

Orphanet J Rare Dis. 2021 Nov 20;16(1):486. doi: 10.1186/s13023-021-02123-6.

DOI:10.1186/s13023-021-02123-6
PMID:34801065
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8605530/
Abstract

INTRODUCTION

Mucopolysaccharidosis type III (MPS III) or Sanfilippo syndrome is a neurodegenerative disease caused by the accumulation of mucopolysaccharides in the body. As the symptoms are wide ranging, it is a challenge to provide a diagnosis and psychological treatment for affected children.

METHOD

The main objective of this study was to describe a form of music therapy treatment applied to three children diagnosed with MPS III. The psychological variables were evaluated by an ad hoc observation recording template, and the physiological variables were measured with a digital meter before and after each session. The perception of the parents was also considered through a semi-structured interview.

RESULTS

An improvement in the psychological variables was shown in all cases. Changes in the physiological variables were also noted, although they varied according to each child. The parents report some benefit of music therapy and they share difficulty in assessing the extent of benefits of the music therapy.

DISCUSSION

Findings indicate that music therapy can be a useful form of treatment with multiple benefits for children with conditions such as MPS III or similar conditions. However, further research is needed in this area and in the development of specific ways of evaluating music therapy.

摘要

简介

黏多糖贮积症 III 型(MPS III)又称 Sanfilippo 综合征,是一种由于黏多糖在体内蓄积而导致的神经退行性疾病。由于症状广泛,为受影响的儿童提供诊断和心理治疗是一项挑战。

方法

本研究的主要目的是描述一种应用于三位 MPS III 确诊儿童的音乐治疗方法。通过专门的观察记录模板评估心理变量,在每次治疗前后使用数字仪表测量生理变量。还通过半结构化访谈考虑了父母的看法。

结果

所有病例的心理变量均显示出改善。生理变量也发生了变化,尽管每个孩子的变化情况不同。父母报告音乐治疗有一定益处,他们在评估音乐治疗益处的程度方面存在困难。

讨论

研究结果表明,音乐治疗对于 MPS III 或类似疾病等病症的儿童来说是一种有益的治疗形式,具有多种益处。然而,这一领域需要进一步研究,需要制定具体的音乐治疗评估方法。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c504/8605530/b7c5509f57b5/13023_2021_2123_Fig6_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c504/8605530/232efadf8b36/13023_2021_2123_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c504/8605530/0f1b77a350f8/13023_2021_2123_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c504/8605530/d6593bc9cd0a/13023_2021_2123_Fig3_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c504/8605530/ab610345b6fb/13023_2021_2123_Fig4_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c504/8605530/23a5b3700aa7/13023_2021_2123_Fig5_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c504/8605530/b7c5509f57b5/13023_2021_2123_Fig6_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c504/8605530/232efadf8b36/13023_2021_2123_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c504/8605530/0f1b77a350f8/13023_2021_2123_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c504/8605530/d6593bc9cd0a/13023_2021_2123_Fig3_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c504/8605530/ab610345b6fb/13023_2021_2123_Fig4_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c504/8605530/23a5b3700aa7/13023_2021_2123_Fig5_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c504/8605530/b7c5509f57b5/13023_2021_2123_Fig6_HTML.jpg

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Reliability of the Music in Everyday Life (MEL) Scale: A Parent-Report Assessment for Children on the Autism Spectrum.日常生活音乐(MEL)量表的信度:一份针对自闭症谱系儿童的家长报告评估
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Sanfilippo 综合征的流行病学:系统文献回顾的结果。
Orphanet J Rare Dis. 2018 Apr 10;13(1):53. doi: 10.1186/s13023-018-0796-4.
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Mortality in patients with Sanfilippo syndrome.Sanfilippo 综合征患者的死亡率。
Orphanet J Rare Dis. 2017 Oct 23;12(1):168. doi: 10.1186/s13023-017-0717-y.
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Symptoms of Autism Spectrum Disorder (ASD) in Individuals with Mucopolysaccharide Disease Type III (Sanfilippo Syndrome): A Systematic Review.黏多糖贮积症 III 型(Sanfilippo 综合征)个体的自闭症谱系障碍(ASD)症状:系统评价。
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