Addressing the unmet needs of people living with Parkinson’s disease | UCB
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Addressing the unmet needs of people living with Parkinson’s disease

Posted by
Elisabeth Dohin, Patient Value Unit - Neurology
People with Parkinson’s disease live with a range of physical motor symptoms including slowness of movement, rigidity, tremor and postural instability.

However, this is the not the full story. People with PD also experience many other non-motor symptoms which impact their daily lives, sometimes in ways that are just as important to them as the classical motor symptoms.

At the 4th World Parkinson’s Disease Congress in Portland, Oregon, this week, UCB is presenting two posters that look at PD in the round.

Findings from the STEPTM research conducted in the UK, US and Canada help to better understand the full lived experience of Parkinson’s disease. Based on insights from patients and their caregivers, this work can help to improve patient outcomes by addressing what matters most to them.

The research finds that clinical definitions can over-simplify the full experience of PD, at the expense of understanding the more complex physical, mental, society and emotional aspects of the condition.

The STEP™ research illustrates the unique lived experience of Parkinson’s, and is designed to give voice to people living with the condition in a way that better incorporates the broad impact of Parkinson’s on a person’s life, relationships and sense of self.

These evidence-based insights support the development of solutions for people living with Parkinson’s, addressing the condition’s multiple dimensions beyond just symptom control.

STEP insights are of major importance to UCB to providing innovative solutions for people living with Parkinson’s.

More than motion
A separate UCB-funded poster explores coping strategies used by people living with PD. It draws on the insights from the More than Motion™ Facebook community where people with PD, caregivers and healthcare professionals can connect, find information and share experiences.

The project identified 113 coping strategies and categorised them into several topics. ‘Exercise/physical activity’ (35%) and ‘Attitude/spiritual coping’ (35%) were the most commonly used strategies. This initiative identified a strong appetite among the PD community for information about coping strategies with the potential to improve their quality of life.

Holistic view
UCB is committed to identifying and addressing the unmet needs of people living with Parkinson’s to enable them to have a more engaged life every day. That is why we support research that takes a holistic view of improving the lives of people living with the disease, and share this knowledge at conferences like this week’s WPD Congress in Oregon.

It is an area we have been active in for several years, helping to establish ourselves as a strong supporter of Parkinson’s research, dedicated to adding value for patients. For example, we developed the Parkinson’s Well-being Map to help patients track their symptoms and prepare for consultations with health professionals.

We look forward to continuing our partnership with those affected by Parkinson’s disease as well as the scientists and health professionals working to find innovative ways to curb its impact.

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Posted by Matt Eagles, 6 October 2016

Very informative article , thank you