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反应转移——帕金森病中疾病进展的体验。

Response shift - The experience of disease progression in Parkinson disease.

作者信息

Yang Jessica, Hanna-Pladdy Brenda, Gruber-Baldini Ann L, Barr Erik, von Coelln Rainer, Armstrong Melissa J, Reich Stephen G, Shulman Lisa M

机构信息

Department of Neurology, University of Maryland School of Medicine, 110 South Paca Street, 3rd Floor, Baltimore, MD 21201, United States.

Department of Epidemiology and Public Health, University of Maryland School of Medicine, 660 West Redwood Street, Howard Hall Suite 200, Baltimore, MD 21201, United States.

出版信息

Parkinsonism Relat Disord. 2017 Mar;36:52-56. doi: 10.1016/j.parkreldis.2016.12.027. Epub 2016 Dec 29.

DOI:10.1016/j.parkreldis.2016.12.027
PMID:28082015
Abstract

OBJECTIVE

To investigate response shift, the recalibration of perceived quality of life (QoL) relative to symptomatic changes in Parkinson disease (PD).

BACKGROUND

Health-related QoL in PD is influenced by improvement vs. decline in disease severity. However, it is unclear how disease course changes internal standards of QoL over time.

METHODS

124 PD patients were subdivided based on Total UPDRS change over 1 year (stable, improved, declined). The EuroQol Visual Analog Scale assessed QoL at baseline (T1) and 1 year later (T2). At T2, patients rated current QoL (T2-current) and reappraised their T1 QoL (T2-retrospective). Recalibration response shifts were represented by the difference between T1 and T2-retrospective QoL ratings.

RESULTS

At follow-up (T2), the total patient sample reported no difference between current (T2 current mean (M) = 76.3) and retrospective (T2-R M = 77.8) QoL ratings. While there was no significant difference between T1 (M = 79.2) and T2-R ratings 1 year later (M = 77.8) for the total sample, there was a change by group interaction (p < 0.005) which showed that retrospectively, decliners reduced ratings (M Δ = -9.0) and improvers increased ratings (M Δ = +6.4) while stable patients did not change.

CONCLUSIONS

When PD patients consider their health status one year ago, decliners recalibrate and downgrade last year's health assessment, while improvers upgrade last year's assessment. Changes in internal calibrations cushion periods of decline or improvement in PD such that patients tend to "stabilize" their general disease course when recalling symptom trajectory, providing insight into the process of adaptation to the effects of disease progression and treatment over time.

摘要

目的

研究反应转移,即帕金森病(PD)患者生活质量(QoL)感知相对于症状变化的重新校准。

背景

PD患者与健康相关的生活质量受疾病严重程度改善或下降的影响。然而,尚不清楚疾病进程如何随时间改变生活质量的内部标准。

方法

根据一年中统一帕金森病评定量表(Total UPDRS)的变化将124例PD患者分为亚组(稳定、改善、下降)。采用欧洲五维度健康量表视觉模拟量表在基线时(T1)和一年后(T2)评估生活质量。在T2时,患者对当前生活质量(T2-当前)进行评分,并重新评估其T1时的生活质量(T2-回顾性)。重新校准反应转移由T1和T2-回顾性生活质量评分之间的差异表示。

结果

在随访时(T2),患者总体样本报告当前(T2当前平均值(M)=76.3)和回顾性(T2-R M=77.8)生活质量评分无差异。虽然总体样本在T1(M=79.2)和一年后的T2-R评分(M=77.8)之间无显著差异,但存在组间交互作用变化(p<0.005),这表明回顾性来看,病情下降者降低了评分(M变化量=-9.0),病情改善者提高了评分(M变化量=+6.4),而病情稳定的患者没有变化。

结论

当PD患者回顾一年前的健康状况时,病情下降者会重新校准并降低去年的健康评估,而病情改善者则会提高去年的评估。内部校准的变化缓冲了PD病情下降或改善的时期,使得患者在回忆症状轨迹时倾向于“稳定”其总体疾病进程,从而深入了解随着时间推移适应疾病进展和治疗效果的过程。

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Objective measurement in routine care of people with Parkinson's disease improves outcomes.
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