Stress and mindfulness in Parkinson's disease - a survey in 5000 patients

Anouk van der Heide, Anne E M Speckens, Marjan J Meinders, Liana S Rosenthal, Bastiaan R Bloem, Rick C Helmich, Anouk van der Heide, Anne E M Speckens, Marjan J Meinders, Liana S Rosenthal, Bastiaan R Bloem, Rick C Helmich

Abstract

Many Parkinson's disease (PD) patients notice that motor symptoms worsen during stress, and experience stress-related neuropsychiatric symptoms such as anxiety and depression. Here we investigated which personal and disease characteristics are associated with perceived stress in PD, which PD symptoms are sensitive to stress, and we assessed self-reported benefits of stress-reducing strategies such as mindfulness. We sent an online survey to the Fox Insight cohort (n = 28,385 PD patients, n = 11,413 healthy controls). The survey included specific questions about the influence of stress on PD symptoms, use of stress-reducing strategies, and several validated scales measuring perceived stress, anxiety, dispositional mindfulness, rumination, and self-compassion. We received completed surveys from 5000 PD patients and 1292 controls. Patients perceived more stress than controls. Among patients, stress was correlated with increased rumination (R = 0.65), lower quality of life (R = -0.56), lower self-compassion (R = -0.65), and lower dispositional mindfulness (R = -0.48). Furthermore, patients indicated that stress significantly worsened both motor symptoms - especially tremor - and non-motor symptoms. Physical exercise was most frequently used to reduce stress (83.1%). Mindfulness was practiced by 38.7% of PD respondents, who noticed improvement in both motor and non-motor symptoms. Among non-users, 43.4% were interested in gaining mindfulness skills. We conclude that PD patients experience greater levels of stress than controls, and that stress worsens both motor and non-motor symptoms. Mindfulness may improve PD symptom severity, with the strongest effects on anxiety and depressed mood. These findings justify further controlled studies to establish the merits of mindfulness and other stress-alleviating interventions.

Conflict of interest statement

The authors declare no competing interests. A. van der Heide reports no disclosures. A. Speckens receives funding from the Dutch Cancer Foundation and the Netherlands Organization for Scientific Research. M. Meinders reports no disclosures. L. Rosenthal receives research support from the Michael J. Fox Foundation, Parkinson’s Foundation, and the National Institute of Neurological Disease and Stroke. B. Bloem receives funding from the National Parkinson Foundation, the Netherlands organization for Scientific Research, International ParkinsonFonds, and the Michael J. Fox Foundation. The Center of Expertise for Parkinson & Movement Disorders the Radboud University Medical Center was supported by a center of excellence grant of the Parkinson’s Foundation. R. Helmich was supported by the Michael J. Fox Foundation (grant #16048) and by the Netherlands Organization for Scientific Research (VENI grant #91617077). R. Helmich serves on the Clinical Advisory Board of Cadent Therapeutics.

Figures

Fig. 1. Determinants of perceived stress in…
Fig. 1. Determinants of perceived stress in Parkinson’s disease.
This figure shows the relation between perceived stress as measured by the Perceived stress Scale (PSS, on the y-axis) and a quality of life measured with the Parkinson’s Disease Questionnaire (PDQ-8), n = 3009; b dispositional mindfulness measured with the Five Facet Mindfulness Questionnaire (FFMQ), n = 2899; c rumination measured with the Ruminative Response Scale (RRS), n = 2899; and d self-compassion measured with the Self Compassion Scale (SCS), n = 2899 (all on the x-axis). For the PDQ-8, we have reversed the scores (1- score), such that for each of the variables shown a higher score means a higher subjective rating. For every plot, the Pearson correlation is shown with the associated 2-tailed significance.
Fig. 2. The effect of stress on…
Fig. 2. The effect of stress on Parkinson’s symptoms.
The change that patients perceive on Parkinson’s symptoms during stress (Panel a, filled in by all PD responders (n = 5000)) or due to different types of stressful activities or situations (Panel b, part of the optional survey (n = 3214)). Both a and b responses were given on a 9-point scale in which 1 stood for severe worsening of symptoms, 5 stood for no change, and 9 for a lot of improvement (represented by the vertical lines). Responses are visualized in a boxplot, in which the box corresponds to 75% of responses and the tails are the remaining 25%, except outliers. Open circles show small outliers and stars show extreme outliers. Vertical lines are answer options on the 9-point scale. All shown effects are significantly different from “no change”, (p < 0.0083 corrected for Fig. 2a; p < 0.0071 corrected for Fig. 2b).
Fig. 3. Perceived effect of mindfulness to…
Fig. 3. Perceived effect of mindfulness to reduce stress in PD patients.
a The frequency with which patients use prespecified ways to reduce stress level in percentage of responders. Physical exercise could be for example walking, cycling, swimming, or sports; relaxation exercise entailed for example yoga, Pilates, or Tai Chi. b, c The change in PD symptoms that patients since they started practicing mindfulness (part of optional questions). Responses were given on a 9-point scale in which 1 stood for a lot more severity in this symptom, 5 stood for no change, and 9 for a lot of improvement. b Responses are visualized here in a boxplot, in which the box corresponds to 75% of responses and the tails are the remaining 25%, except outliers. Open circles show small outliers and stars show extreme outliers. Vertical lines are answer options on the 9-point scale. All shown effects are significantly different from “no change”, p < 0.0071 corrected. c The positive relationship between the frequency with which mindfulness was practiced, and the level of improvements of PD symptom severity that was experienced. Lines represent the mean improvement on every PD symptom per mindfulness practice frequency, including 95% CI of all responses. Spearman’s correlations (rho) with corresponding 95% CI for all symptoms are shown in the legend. d Reasons to not practice mindfulness. Patients were allowed multiple answer options (part of optional questions).

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