Patient-Carer-Provider Communication about the Impact of Motor and Non-motor Fluctuations

Study Rationale:
Temporary periods of poor mobility and other symptoms (OFF periods) are common in Parkinson’s disease and are associated with poorer quality of life. OFF symptoms are complex, with both motor and non-motor aspects, which makes communication and proper treatment of these symptoms challenging. How patients, care partners, and health care professionals each perceive and communicate about OFF symptoms is not well understood.

Hypothesis:
We aim to better understand the impact of OFF periods on people with Parkinson’s disease and their care partners, and to identify factors that either improve or worsen communication about OFF periods between patients, care partners, and health care professionals.

Study Design:
This study will be conducted in three phases. Firstly, we shall search through and summarize the existing information on the impact and communication of OFF periods on patients and care partners. We shall use the information gathered from the first phase to guide the second phase, in which we shall separately interview 20 patients with Parkinson’s disease, care partners, and physicians each about their personal experiences and impact of OFF periods, and how they each communicate about OFF symptoms. The results of the interviews will be used to design a survey for the third phase of the study. The survey will be distributed to 100 patients, 100 care partners, and 100 physicians to obtain standardized information about the impact and communication of OFF periods from a larger sample of each of the above groups of people.

Impact on Diagnosis/Treatment of Parkinson’s Disease:
Improved understanding of the factors that improve or worsen communication about OFF periods between patients, care partners, and physicians will help improve communication about complex and variable OFF symptoms, allowing for more appropriate treatment of these symptoms in the individual patient with Parkinson’s disease.

Next Steps for Development:
Once factors that improve or worsen communication about OFF symptoms have been identified, publication of materials that educate patients, care partners, and physicians regarding these can be developed to improve communication and treatment of OFF periods.