Associate Professor Jennifer Mammen and co-authors explore Parkinson’s effects on daily life
UMass Dartmouth College of Nursing & Health Sciences faculty member Dr. Jennifer Mammen recently co-authored “Three years later: tracking bothersome symptoms and impacts for people with early Parkinson’s disease” in the Journal of Neurology.
The three-year study followed 32 patients with early Parkinson’s disease to understand how often symptoms occur, how disruptive they are, and their impact on everyday life.
The study is based on perspective mapping, a methodology created by Mammen, who was the co-PI for the study along with Jamie Adams M.D.
“It has been incredibly rewarding to lead this study with Dr. Adams and personally interview people living with Parkinson’s to hear their experiences firsthand. This has been groundbreaking research that is now widely considered a landmark study of patient experience. It illuminates how people are adversely affected by Parkinson’s in daily life, yet maintain resilience and an ability to adapt and overcome,” said Mammen.
“Our findings are being used to identify what matters most to people with Parkinson’s and develop new patient-reported outcome measures. Additionally, our novel approaches to mapping personal experiences are impacting fields beyond Parkinson’s. Together, we are making a true difference for patients, families, and the future of clinical trials."
Participants completed yearly interviews mapping the symptoms they experienced and how bothersome they were. The most troublesome motor symptoms included tremors, balance and gait difficulties, stiffness, and slow movement. The most common non-motor symptoms included fatigue, sleep issues, mood changes, and thinking difficulties.
Most symptoms remained relatively stable, with gait and balance worsening the most over time. However, their impact on daily life increased year by year, with participants reporting greater effort needed for routine activities.
Many patients were able to develop coping strategies and lifestyle adjustments that helped reduce the perceived burden of symptoms.
This study was funded by The Michael J. Fox Foundation for Parkinson’s Research.