What is it like to live with Parkinson’s disease?

When people think of Parkinson’s Disease, they are likely to think of some of the physical symptoms commonly associated with the condition, such as tremors, impaired mobility, and difficulty in swallowing. It is however unlikely that they will immediately consider the broader emotional and psychosocial elements which, for many people with Parkinson’s, cause them significant challenges. Indeed, many patients describe Parkinson’s impacting on both personal relationships and on their own sense of self.

At UCB, everything we do is guided by one simple question – how can we create more value for people living with severe diseases? With this in mind, we commissioned STEP™, an innovative market research (“research”) programme, to help us understand the real lived experiences of people living with Parkinson’s disease. These insights, shared with the Parkinson’s community in the current edition of Parkinson’s Life magazine, have the potential to improve the way we approach patient care for people with Parkinson’s, and the way we provide support for them and their families.

The STEP™ research was undertaken in the UK, US and Canada. It included 63 people with Parkinson’s, between the ages of 40 and 76, who had lived with Parkinson’s for between six months and 21 years and had varied experiences of treatment. A total of 19 partners and those providing care, 18 healthcare professionals and other Parkinson’s experts also took part.

Researchers visited participants at home to glean first-hand experiences about living with the condition. People with Parkinson’s and their loved ones were asked to speak freely about their experiences, and some also took part in group discussions where they shared the aspects that mattered most to them.

The researchers – who were anthropologists and strategists – also held in-depth one-to-one interviews with healthcare professionals and other experts who have frequent contact with people living with the condition, and visited the places where they interact.

The findings suggest that people with Parkinson’s first experience the condition as a lifestyle disorder, then as intermittent periods of capability and loss, and finally as a loss of independence.

Based on these insights, UCB identified a number of phases experienced by patients, loved ones, or care givers, as each an individual Parkinson’s journey unfolds. These range from ‘Pre-diagnosis’, perhaps noticing early first signs of Parkinson’s such as a finger twitch transitioning to a ‘Lifestyle’ phase where patients are adjusting to live with their condition,  ‘Straddling’, referring to periods of time with limited symptoms (for example when medication is working and symptoms are reduced) alongside times where symptoms are more severe (for example when positive medication effects have  worn off), culminating in a ‘Disease’ phase, where after years of ‘straddling’, management of symptoms becomes increasingly challenging, impairing on independence and impacting on their entire personhood as they know it.

Our STEP™ market research was presented at a previous World Parkinson Congress, and the response from attendees was both heart-warming and inspiring. Some delegates expressed genuine surprise at the breadth and nature of the research, and with our objective of better understanding the day to day lived experiences of people with Parkinson’s. We are extremely proud of our commitment to support patients in improving their lives - whether that means bringing them medicines that alleviate symptoms, raising disease awareness, finding novel ways for patients and health professionals to communicate, or moving medical science forward.

Following the positive reception to STEP™, UCB developed a comprehensive report summarizing and discussing the market research finding, which can be downloaded here. The research clearly demonstrates that Parkinson’s has an impact on a person’s life, relationships and sense of self.

By better understanding the lived experiences of people with Parkinson’s, we hope our evidence-based market research could support the  Global Parkinson’s community in developing more appropriate and holistic approaches, with the confidence that they are addressing real needs.

In our opinion, this is what it means to be Inspired by Patients. Driven by Science.