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Stigma as a key determinant of health-related quality of life in Parkinson’s disease

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Abstract

Purpose

People with Parkinson’s disease (PD) may experience stigma due to their visible features of movement and communication difficulties. This paper aimed to examine the role of experienced stigma in health-related quality of life (QOL), after controlling for personal and clinical characteristics.

Methods

This is a preliminary analysis of a subset of baseline data from the Social Self-Management of Parkinson’s Disease Study (SocM-PD), an ongoing 3-year prospective cohort study. Seventy-three people with PD (M age = 65.72, 29 women) participated in this study. Hierarchical multiple regression analyses were used to determine the role of stigma in QOL, after controlling for gender, disease severity, depression, and motor difficulties of daily living.

Results

Significant correlations were found between QOL with gender (r = .26), disease severity (r = .38), depression (r = .65), motor difficulties of daily living (r = .71), and stigma (r = .83). After controlling for the significant covariates, stigma made a significant and unique contribution to the explanation of QOL by 13.7 % (p < 0.001). A final hierarchical multiple regression with stigma and the 4 covariates revealed an overall model that explained 77.8 % of the total variance of QOL (F [5, 63] = 48.79, p < 0.001).

Conclusions

Experienced stigma appears to be a key determinant of QOL in people with PD. The results suggest the importance of further understanding stigma in PD to develop possible intervention strategies. Future work is also needed to verify the results with a larger and longitudinal dataset of the SocM-PD.

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Acknowledgments

The project is supported by the National Institute of Nursing Research, United States National Institutes of Health, Grant Number R01NR013522. The use of REDCap electronic data capture tools is supported by Grant (UL1 TR000073). The first author did this research at Tufts University under the Fulbright Senior Research Grants. We would like to thank Michael Stevenson, M.S., for his assistance with mediation analysis.

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Authors and Affiliations

  1. Department of Occupational Therapy, College of Medicine, National Cheng Kung University, 1 University Road, Tainan, 701, Taiwan

    Hui-Ing Ma

  2. Institute of Allied Health Sciences, College of Medicine, National Cheng Kung University, Tainan, Taiwan

    Hui-Ing Ma

  3. Department of Neurology, Parkinson’s Disease and Movement Disorders Center, Boston University Medical School, Boston Medical Center, Boston, MA, USA

    Marie Saint-Hilaire & Cathi A. Thomas

  4. Department of Occupational Therapy, School of Arts and Sciences, Tufts University, Medford, MA, USA

    Linda Tickle-Degnen

Authors
  1. Hui-Ing Ma
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  2. Marie Saint-Hilaire
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  3. Cathi A. Thomas
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  4. Linda Tickle-Degnen
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Correspondence to Hui-Ing Ma.

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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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Informed consent was obtained from all individual participants included in the study.

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Ma, HI., Saint-Hilaire, M., Thomas, C.A. et al. Stigma as a key determinant of health-related quality of life in Parkinson’s disease. Qual Life Res 25, 3037–3045 (2016). https://doi.org/10.1007/s11136-016-1329-z

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  • DOI: https://doi.org/10.1007/s11136-016-1329-z

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