10 Fox Focus | Research
Exploring Patient Preferences on Therapies for Motor Symptoms
Understanding patient preferences can help care teams guide treatment decisions.
PATIENT FEEDBACK IS CRITICAL at every stage of research, and people with Parkinson’ s are experts on their disease. Their experiences can— and should— inform not only if a new treatment is working, but what treatments may impact their lives the most.
For many, oral medications work for managing symptoms. But as symptoms progress, people with PD may need to adjust their treatment plan: Should they consider an under-the-skin infusion pump, or deep brain stimulation? Understanding patient preferences is crucial to ensuring that the right types of treatment, offering the greatest patient benefit, are being developed.
A new survey by The Michael J. Fox Foundation( MJFF) aims to understand more about patient attitudes and preferences around therapeutic options beyond oral medication.
“ The survey will help us see whether and how the features of different treatments matter to patients and impact their care decisions,” said Katherine Purdy, lead patient insight analyst at MJFF.“ We’ ll have a better understanding of their willingness to take on risk and consider the trade-offs of these treatments.”
Researchers aim to enroll at least 600 respondents across the United States and
United Kingdom. The survey, sent via email in April, was deployed to the Parkinson’ s community, including people with PD participating in Fox Insight, an online clinical study of people with PD and control volunteers without PD. Survey respondents must have been diagnosed with PD in or before 2020, use oral medications such as levodopa, and experience“ off” periods( when motor symptoms return as medication wears off) or dyskinesia, the uncontrolled, involuntary movement that can occur with long-term levodopa use.
The survey presents participants with sideby-side comparisons of different hypothetical treatment options to help control movement symptoms. Several types of treatments are featured in the survey, such as deep brain stimulation, MRI-guided focused ultrasound, stem cell therapy and infusion pumps( including under-the-skin infusion pumps).
Survey respondents are asked to indicate their treatment preferences based on the treatment type and other factors, such as the length of symptom control, the likelihood of improvement, the required follow-up visits and the risk of severe side effects.“ Collecting this information can improve conversations between patients and their doctors, ultimately helping to inform treatment decisions,” said Purdy.