Response shift – The experience of disease progression in Parkinson disease
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
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