Response shift – The experience of disease progression in Parkinson disease

https://doi.org/10.1016/j.parkreldis.2016.12.027Get rights and content

Highlights

  • Health-related QoL in Parkinson's Disease patients is influenced by disease course.

  • Decliners recalibrate and downgrade last year's health assessment.

  • Improvers upgrade last year's assessment.

  • Clinically stable patients do not change their assessment.

  • Overall PD patients “stabilize” perceived general disease course when recalling symptom trajectory.

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.

Introduction

Parkinson disease (PD) is a progressive neurodegenerative disorder that is characterized by the loss of dopaminergic neurons in the substantia nigra. The clinical presentation classically involves motor symptoms of tremor, bradykinesia, and rigidity, although non-motor and neuropsychiatric symptoms are increasingly recognized as central components.[1] PD is the second most common neurodegenerative disease and affects more than 1 million people in North America.[2] While current treatments such as levodopa are able to reduce motor symptoms by replenishing dopamine, PD progression results in significant disability and reduced quality of life over time.[3] Quality of life (QoL) measures are critical to the clinical assessment of PD since they incorporate the patients' perspective of their health [4].

Response shift is a common phenomenon in patients living with a chronic condition. It is defined as a change in the internal standards, values, and conceptualization of one's self-evaluation of a target construct such as disability or quality of life (QoL) [5]. The focus of this paper will be on response shifts in health-related QoL. Three types of response shift have been described, including recalibration (changes in internal standards of measurement), reprioritization (changes in priority of the components of the target construct), and reconceptualization (redefinition of the target construct). There are several methods to measure response shift. The then-test (also known as the retrospective pretest-posttest design method), is used by the majority of response shift studies and relies on asking respondents to retrospectively rate their QoL at baseline [6].

While response shift has been studied in other chronic conditions, including multiple sclerosis [7], there are few studies examining response shift in PD. The objective of this study is to investigate response shift relative to symptomatic changes of improvement or decline over time. Understanding this relationship will help clinicians better interpret QoL data in PD.

Section snippets

Methods

The sample comprises patients with PD diagnosed by a movement disorder specialist at the University of Maryland PD and Movement Disorders Center. Patients were enrolled on an ongoing basis and assessed during routine office visits between September 2007 and June 2013. The treating neurologist completed the Unified Parkinson's Disease Rating Scale (UPDRS) [8] for each patient. The UPDRS score was used as a measure of overall clinical status at a specific time point. This study was approved by

Results

The data sample comprised 124 patients with PD. Their age ranged from 50 to 86 years with a mean age (standard deviation) of 67.7 (8.6). Most subjects were male (62.9%), white (92.2%), married (64.5%), and had graduated college (72.6%). Most subjects were receiving levodopa treatment (∼80.0%). The mean disease duration was 9.3 years since onset of symptoms (SD 3.9) and 7.9 years since diagnosis (SD 4.3). Patient characteristics divided by group (overall, stable, improvers, decliners) and are

Discussion

This study shows that PD patients recall their health differently depending on their disease trajectory. Decliners recalled their health-related QoL from the previous year as lower than they actually rated at that baseline visit. Improvers rated their QoL from the previous year as higher than they rated at that baseline visit, although this is somewhat limited because the change was not statistically significant. Patients who were clinically stable over the year of follow-up were accurate in

References (21)

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