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Measuring Quality of Life in People with Parkinson’s Disease: State of the Art and Areas for Development

Study Rationale: Scales to measure quality of life are important tools for research. However, it is unclear whether currently available scales for measuring quality of life take into account the priorities and values of an individual with Parkinson’s disease (PD). In a Working Group that brings together people with PD, care partners, experts in measurement and health care professionals specializing in PD, we will examine the available quality of life measurement tools from the point of view of their ability to measure what matters most to people with PD.

Hypothesis: We hypothesize that evaluating quality of life measurement tools for their ability to assess things that matter to individuals with PD, we can provide recommendations for use of available scales or development of a new scale that will be more relevant to the PD community.

Study Design: We will review the existing literature to summarize what is known about contributors to quality of life and well-being in people with PD. We will then evaluate instruments that have been used to measure quality of life in PD research, assessing how well they capture the range of contributors to quality of life at an individual level. We will ask people with PD to help us evaluate the existing instruments using in one-on-one interviews with them and, where possible, their care partners. If needed, we will explore instruments used to measure quality of life in other diseases.

Impact on Diagnosis/Treatment of Parkinson’s disease: By ensuring that our measurement tools capture what matters to people with PD, we can properly evaluate the efficacy of new treatments.

Next Steps for Development: Depending on our findings, we will either encourage the use of existing instruments for measuring individual quality of life for PD research, or guide the development of funding opportunities to develop new instruments for measuring individual quality of life in PD.


  • Connie Marras, MD, PhD

    Toronto Canada

  • Glenn T. Stebbins, PhD

    Chicago, IL United States

  • Jennifer R Mammen, PhD

    Dartmouth, MA United States

  • Jamie L. Adams, MD

    Rochester, NY United States

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