Adamas Pharmaceuticals Inc launches the education campaign “Picture More Time” in response to a survey suggesting the need for education in the Parkinson’s community about OFF time and dyskinesia.
An Incomplete Understanding
The survey, co-sponsored by the Parkinson & Movement Disorder Alliance (PMD Alliance) and Adamas, received 775 respondents, including 527 people with PD and 248 care partners. Seventy-eight percent of those surveyed reported an incomplete understanding of OFF time and dyskinesia.
The results also showed that people with PD and care partners find these motor complications challenging, as well as stigmatizing and socially disabling, a media release from Adamas Pharmaceuticals Inc explains.
Per the survey, the results suggest:
- Experiencing discomfort in daily tasks such as driving or carrying a grandchild: 51% of people with PD who had dyskinesia and OFF indicated that the impact of dyskinesia made them uncomfortable or nervous in some activities, such as carrying a grandchild. Similarly, 64% of care partner respondents reported that watching their partner experiencing OFF or dyskinesia made them uncomfortable or nervous when their loved one engages in everyday activities.
- Disruption to their hobbies and social activities: 49% of people with PD reported the impact of dyskinesia stopped them from doing hobbies and/or made them less likely to be social with friends.
- Feeling socially isolated and lonely: 41% of people with PD reported that motor complications felt socially isolating and made them feel lonely. Correspondingly, 34% of care partners surveyed reported the impact of motor complications made them and their loved one feel isolated and lonely.
New Educational Resource
As a result of these findings, Adamas launched “Picture More Time” to help patients and care partners identify and understand OFF and dyskinesia PD motor complications, as well as the emotional and social impact they may have on everyday activities and gatherings, per the release.
“We are proud to have supported this survey, which highlights the need for better understanding of the impact of PD motor complications, not only from the perspective of the person with Parkinson’s, but also from the care partner perspective.”
“The survey results indicate that the care partner is very much affected by their partner’s gradual withdrawal from public outings and social engagements as PD motor complications worsen. We believe in challenging the status quo and feel confident that this comprehensive disease education program from Adamas will empower people with Parkinson’s as well as their care partners to talk with their physicians in pursuit of better motor control and emotional well-being.”
— Sarah Jones, CEO, PMD Alliance
“We heard loud and clear from the Parkinson’s community that there remains confusion about OFF, dyskinesia, and the impact these debilitating motor complications may have on someone with PD and their care partner. By offering these educational resources, our goal is that people with PD and their care partners are equipped to work with their doctors to maximize good movement control so they may have an active and socially connected lifestyle.”
— Adrian Quartel, MD, Chief Medical Officer, Adamas
Resources available from the “Picture More Time” website include information on OFF and dyskinesia motor complications, a guide to enable productive conversations with physicians and healthcare providers, PD support group discussion guides, and other materials to support people with PD, their families, and their care partners.
[Source(s): Adamas Pharmaceuticals Inc; Business Wire]