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Assessment of Parkinson’s disease levodopa-induced dyskinesia: a qualitative research study

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Abstract

Background and objectives

The 26-item Parkinson disease dyskinesia scale (PDYS-26) was developed to assess the impact of Parkinson’s disease levodopa-induced dyskinesias (PD-LID). The purpose of this qualitative research study was to assess the content validity of the PDYS-26 in an independent sample and to use the findings to suggest a conceptual framework around the impact of PD-LID.

Methods

PD patients experiencing LID and their caregivers were recruited from four US clinical sites. Stage I involved 22 qualitative concept elicitation interviews with patients and caregivers, and 11 qualitative cognitive interviews (CI) with patients about the PDYS-26. The PDYS-26 was modified based on Stage I findings. Stage II consisted of 13 CI on the Modified PDYS.

Results

Forty-six participants were interviewed across both stages of the study. Patient mean age was 67.3 (SD ± 9.55) years; 19 (54.3 %) female; 34 (97.1 %) white. The content validity of the PDYS-26 was generally supported. A revised conceptual framework with three hypothesized domains (body control, activities of daily living, social consequences) was developed. Modifications were made to the PDYS-26 (i.e., emphasizing LID in the instructions; response scale modification; deleting or modifying items), which resulted in the 22-item Modified PDYS.

Conclusions

Stage I and II findings suggested a number of modifications to the scale in order to improve the content validity. Psychometric testing of the revised scale with a larger patient sample is suggested to evaluate item performance, establish scoring, and provide quantitative support for the conceptual framework.

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Conflict of interest

This study was sponsored by Novartis AG. J.P. is an employee of Novartis. C.K. was an employee of Novartis at the time of the study. A.E.S. is employed by the University College of London, in London, UK. W.R.L., S.M. and A.L. are employees of Evidera which received funding from Novartis for services performed in connection with the development of this qualitative research study and manuscript.

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Authors and Affiliations

  1. Evidera, 430 Bedford Street, Suite 300, Lexington, MA, USA

    William R. Lenderking

  2. Evidera, Bethesda, MD, USA

    Sally Mannix & Amanda Landrian

  3. Novartis AG, Basel, Switzerland

    Jennifer Petrillo

  4. Formerly Novartis Pharmaceuticals Corp., East Hanover, NJ, USA

    Christopher Kenney

  5. University College London, London, UK

    Anette-Eleonore Schrag

Authors
  1. William R. Lenderking
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  2. Sally Mannix
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  3. Jennifer Petrillo
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  4. Christopher Kenney
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  5. Amanda Landrian
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  6. Anette-Eleonore Schrag
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Correspondence to William R. Lenderking.

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Lenderking, W.R., Mannix, S., Petrillo, J. et al. Assessment of Parkinson’s disease levodopa-induced dyskinesia: a qualitative research study. Qual Life Res 24, 1899–1910 (2015). https://doi.org/10.1007/s11136-015-0925-7

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  • DOI: https://doi.org/10.1007/s11136-015-0925-7

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