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(Supplement) Self-reported Perceptions and Self-reported Outcomes on Motor and Non-motor Symptoms in the Parkinson's Disease Continuum: A Systematic Review of Mixed Methods

Study Rationale: People are unique in the way they experience quality of life. Throughout the progression of Parkinson's Disease, patients and their care partners have different perceptions of motor and non-motor symptoms and identifying their core needs is a crucial component of high-quality care.

Hypothesis: This study seeks to answer the following question: As Parkinson's disease progresses, what are the motor and nonmotor symptoms that most impact the quality of life of patients and care partners?

Study Design: We will conduct a mixed methods systematic review looking for studies that investigate self-reported perceptions (qualitative studies) and self-reported results (quantitative studies) on the influence of Parkinson's Disease symptoms on the quality of life of patients with Parkinson's Disease and their care partners.

Impact on Diagnosis/Treatment of Parkinson’s disease: This study has the potential to impact the delivery of clinical and research plans that meet end-user preferences and needs by understanding what matters for the quality of life of Parkinson's Disease patients and their care partners when both motor and non-motor symptoms are analyzed throughout the progression of the disease.

Next Steps for Development: If successful, the results of this study could be useful to drug developers as they explore potential areas of unmet need for people with Parkinson's disease and their care partners. Furthermore, it may reveal the potential need for development or improvement of new outcome measures in clinical trials.


Researchers

  • Michelle Hyczy de Siqueira Tosin, RN, MSN, PhD

    Chicago, IL United States


  • Christopher G. Goetz, MD

    Chicago, IL United States


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