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接受综合护理的帕金森病患者的健康相关生活质量。

Health-related quality of life in people with Parkinson's disease receiving comprehensive care.

作者信息

Soh Sze-Ee, Morris Meg E, Watts Jennifer J, McGinley Jennifer L, Iansek Robert

机构信息

Department of Epidemiology and Preventative Medicine, Monash University, The Alfred Centre, 99 Commercial Road, Melbourne, Vic. 3004, Australia.

Physiotherapy, School of Allied Health, La Trobe University, Melbourne Campus, Plenty Road, Bundoora, Vic. 3083, Australia. Email.

出版信息

Aust Health Rev. 2016 Jan;40(6):613-618. doi: 10.1071/AH15113.

DOI:10.1071/AH15113
PMID:26910356
Abstract

Objectives The aim of the present study was to quantify the baseline variation in health-related quality of life (HRQOL) between individuals with Parkinson's disease (PD) referred to a comprehensive care program and those attending standard neurological services. Methods Participants included individuals with PD receiving conventional care from neurologists in private practice and individuals referred to a comprehensive inter-professional team hospital out-patient service. The Parkinson's Disease Questionnaire-39 (PDQ-39) and the EuroQoL (EQ-5D-3L) were used to quantify HRQOL. Results Participants referred to an inter-professional service were more likely to have poorer indices on PD-specific measures but not for generic HRQOL compared with individuals receiving standard neurological services. After adjusting for age, gender, disease severity and duration, people referred to a comprehensive care program were more likely to have a higher score for the PDQ-39 summary index (PDQ-39 SI; mean±s.d. 27.2±11.0; 95% confidence interval (CI) 25.5, 28.9) compared with individuals receiving standard neurological services (PDQ-39 SI mean 0.2±12.8; 95% CI 18.0, 22.4). Conclusions Compared with those attending standard neurological out-patient clinics, individuals referred to an inter-professional PD program are more likely to have advanced disease and poorer HRQOL. This observation has implications for the way in which people with PD are recruited for future clinical trials, because uneven recruitment from different sources may be a potential source of bias. What is known about the topic? Given that PD is associated with a complex array of motor and non-motor symptoms, an inter-professional team approach to service provision is argued to be optimal for individuals living with this debilitating condition. What does this paper add? This paper has shown that individuals referred to an inter-professional service are more likely to have advanced disease and complex care needs. Compared with those referred to neurologist private clinics, those referred to an inter-professional clinic had less functional independence and lower PD-specific HRQOL when first assessed, even after controlling for disease severity. What are the implications for practitioners? When recruiting for future trials to examine the efficacy of multidisciplinary care programs in people with PD, it is important to take into account whether these individuals have been referred to an inter-professional service. There may be a potential source of bias if participants were recruited predominantly from such services.

摘要

目的 本研究旨在量化被纳入综合护理项目的帕金森病(PD)患者与接受标准神经科服务的患者在健康相关生活质量(HRQOL)方面的基线差异。方法 参与者包括在私人诊所接受神经科医生常规治疗的PD患者以及被转介至综合跨专业团队医院门诊服务的患者。使用帕金森病问卷 - 39(PDQ - 39)和欧洲生活质量量表(EQ - 5D - 3L)来量化HRQOL。结果 与接受标准神经科服务的患者相比,被转介至跨专业服务的参与者在PD特异性指标上更可能有较差的结果,但在通用HRQOL方面并非如此。在调整年龄、性别、疾病严重程度和病程后,与接受标准神经科服务的患者(PDQ - 39 SI均值0.2±12.8;95%置信区间(CI)18.0,22.4)相比,被纳入综合护理项目的患者在PDQ - 39总结指数(PDQ - 39 SI;均值±标准差27.2±11.0;95% CI 25.5,28.9)上得分更高。结论 与在标准神经科门诊就诊的患者相比,被转介至跨专业PD项目的患者更可能患有晚期疾病且HRQOL较差。这一观察结果对PD患者未来临床试验的招募方式具有启示意义,因为来自不同来源的不均衡招募可能是潜在的偏倚来源。关于该主题已知的情况是什么?鉴于PD与一系列复杂的运动和非运动症状相关,有人认为跨专业团队的服务提供方式对于患有这种致残性疾病的个体是最佳的。本文补充了什么?本文表明,被转介至跨专业服务的个体更可能患有晚期疾病且有复杂的护理需求。与被转介至神经科私人诊所的患者相比,首次评估时,被转介至跨专业诊所的患者即使在控制疾病严重程度后,功能独立性也较低且PD特异性HRQOL较低。对从业者有何启示?在为未来试验招募患者以检验多学科护理项目对PD患者的疗效时,重要的是要考虑这些个体是否被转介至跨专业服务。如果主要从这些服务中招募参与者,可能存在潜在的偏倚来源。

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