Specific patient-reported outcome measures for Parkinson’s disease: analysis and applications

Abstract

Patient-reported outcomes (PROs) are defined as the “patient’s report of a health condition and its treatment”. This type of assessment encompasses symptoms, functional status, psychological well-being, health-related quality of life (HRQoL) and other aspects. PROs are increasingly used in clinical practice and research, owing to the uniqueness of the data they furnish. The methodology used to design and test PRO instruments is drawn from psychology, social sciences and education. The present review focuses on PROs (since 2000) and HRQoL instruments specific to Parkinson’s disease. Parkinson’s disease is a complex disease that causes motor and nonmotor manifestations, many of which can only be assessed through PRO measures. New PRO instruments and active research to improve their scientific quality are to be expected in the next 5 years.

Keywords::

• assessment
• health-related quality of life
• nonmotor symptoms questionnaire
• Parkinson fatigue scale
• Parkinson’s disease
• Parkinson’s Disease Sleep Scale
• patient-reported outcome
• SCOPA–AUT
• SCOPA–Sleep
• Wearing-OFF questionnaire

Financial & competing interests disclosure

The authors have no relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.

No writing assistance was utilized in the production of this manuscript.

Notes

^*Year of publication of main validation paper provided.