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针对亨廷顿病患者的物理治疗干预

Physical therapy intervention for people with Huntington disease.

作者信息

Busse Monica E, Khalil Hanan, Quinn Lori, Rosser Anne E

机构信息

Department of Physiotherapy, School of Health Care Studies, Cardiff University, Ty Dewi Sant, Heath Park, Cardiff CF14 4XN, Wales, United Kingdom.

出版信息

Phys Ther. 2008 Jul;88(7):820-31. doi: 10.2522/ptj.20070346. Epub 2008 May 8.

Abstract

BACKGROUND AND PURPOSE

The clinical symptoms of Huntington disease (HD) include progressive movement disorders, cognitive deficits, and behavioral changes, all of which affect an individual's ability to participate in activities of daily living. To date, very few quantitative or qualitative studies have been conducted to guide physical therapists working with people with HD. The objective of this study was to characterize current physical therapist practice for people with HD, thus informing the development of standardized clinical care and future research studies.

SUBJECTS AND METHODS

Consultation with physical therapists working with people with HD was undertaken in the form of mailed questionnaires (n=49) and semistructured interviews (n=8). The development of the interview schedule was aided by consideration of the data obtained from the questionnaires. Themes identified from the interviews were considered in light of published literature and questionnaire responses.

RESULTS

The main issues that emerged from the interviews were classified into 3 subthemes: (1) there is insufficient use of routine physical therapy-related outcome measures at different stages of HD, (2) there is underutilization of physical therapy services in managing HD (particularly in the early stages), and (3) the management of falls and mobility deficit progression is a key treatment aim for people with HD.

DISCUSSION AND CONCLUSION

A conceptual framework for physical therapy intervention in HD was developed on the basis of the themes that emerged from the data in this study. Such a framework has utility for complex, progressive conditions such as HD and may facilitate clinical decision making and standardization of practice and affect the development of future physical therapy trials.

摘要

背景与目的

亨廷顿舞蹈症(HD)的临床症状包括进行性运动障碍、认知缺陷和行为改变,所有这些都会影响个体参与日常生活活动的能力。迄今为止,很少有定量或定性研究来指导为HD患者提供服务的物理治疗师。本研究的目的是描述目前物理治疗师对HD患者的治疗实践,从而为标准化临床护理的发展和未来的研究提供参考。

研究对象与方法

通过邮寄问卷(n = 49)和半结构化访谈(n = 8)的形式,与为HD患者提供服务的物理治疗师进行了咨询。访谈提纲的制定得益于对问卷所获数据的考量。根据已发表的文献和问卷回复,对访谈中确定的主题进行了思考。

结果

访谈中出现的主要问题分为3个次主题:(1)在HD的不同阶段,常规物理治疗相关结局指标的使用不足;(2)在HD管理中物理治疗服务利用不足(尤其是在早期阶段);(3)跌倒和运动功能障碍进展的管理是HD患者的关键治疗目标。

讨论与结论

基于本研究数据中出现的主题,制定了HD物理治疗干预的概念框架。这样一个框架对HD等复杂的进行性疾病具有实用性,可能有助于临床决策和实践标准化,并影响未来物理治疗试验的开展。

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