Could your subconscious mind affect your Parkinson’s treatment outcomes?
PD in Practice
sponsored by UCB
Author: UCBPublished: 15 February 2018
Prep: Cook: Serves:
By using innovative research, people living with Parkinson’s, caregivers and healthcare professionals have shed new light into the subconscious and behavioural influences that affect decision-making around treatment for the condition
When an individual is diagnosed with Parkinson’s, many factors can influence their behaviour, the way they make decisions, and the actions they take to manage their condition. Our own individual biases and perceptions can shape, change or reinforce beliefs related to treatment. In the case of Parkinson’s, people are grappling with a condition with an uncertain outcome and a range of treatments to choose from.
To understand these subconscious influences on treatment behaviour, an innovative behavioural market research (“research”) programme, called DRIVE™, was conducted with people with Parkinson’s, carers and healthcare professionals following these main principles:
The programme looked at how people with Parkinson’s:
evaluate various moments in their treatment journey
set their goals and expectations from treatment
cope with various challenges
understand the roles and inputs of others
evaluate the effectiveness, tolerability and cost-benefit of medication – and what impact this has on their adherence to treatment.
“Parkinson’s disease is a very individual experience”
The key findings of the DRIVE™ programme were:
1. From subjectivity to objectivity People with Parkinson’s are often primed with experiences and information that leaves them feeling uncertain about how things will progress and how different treatments might affect them. Finding ways to more objectively measure wellbeing, tolerability and treatment goals related to efficacy may help people make a more positive assessment of these factors.
2. Openness to treatment trials varies People with Parkinson’s are more likely to be open to trying something different. Psychologically, they are generally primed for loss, and, in this situation, may be more willing to take a decision even if the gain is uncertain – adopting a mindset of ‘I have nothing to lose’. On the other hand, some individuals will hold onto a minimal gain for fear of a greater loss – perhaps being afraid to change from a sub-optimal treatment in case an alternative would be even less effective, or could introduce additional or intolerable side-effects. In this instance, a patient would be less open to change.
3. Roles evolve over time As Parkinson’s progresses, control over treatment choices also evolves. Initial decisions over treatment may be driven by healthcare professionals, primarily based on medication efficacy. But over time, the balance switches to people living with Parkinson’s, some of whom will build a picture of what works for them, and will need to share this with others to optimise their treatment.
Providing appropriate information at each phase should aid decision making and optimise treatment choice. Decisions about switching treatment – which involves weighing up the desirable and undesirable aspects of existing treatments against the unknown risks of an alternative – will be motivated, at least to some degree, by subconscious influences.
Personalisation is key
Parkinson’s disease is a very individual experience. By recognising this, and identifying the factors which motivate individuals in their decisions about treatment – instead of using the more standard guidelines such as disease stage or symptoms tracking – we may be able to approach such decisions on a more personal basis. More should be done to reduce the uncertainty that patients face at the start of treatment, and while evaluating treatments as their disease progresses. Preparing people with Parkinson’s for their experience could optimise their treatment and improve their overall quality of life. Ref: HQ/1217/NU/00087
About UCB UCB is a global biopharmaceutical company with a focus on neurology.
UCB is committed to identifying and addressing the unmet needs of people living with Parkinson’s disease to enable them to have a more engaged life every day.
This research was conducted by Final Mile Consulting on behalf of UCB.
The authors thank the people living with Parkinson’s, and all other participants in addition to the researchers and their teams who contributed to this research.
DRIVE™ is a trademark of UCB Biopharma SPRL.
To get access to the full report, please go on UCB.com.
This article is sponsored by UCB. The information in this article is given for information purposes only and does not represent an endorsement by Parkinson’s Europe of any particular treatments, products or companies. This article is not a substitute for advice from your doctor, pharmacist or other healthcare professional. Parkinson’s Life makes no representations or warranties of any kind, express or implied, about the completeness or accuracy of information provided.
The power of the voice: “Think of singing as an exercise”
Elizabeth Stegemöller on music therapy for Parkinson’s disease
3 weeks ago
Parkinson’s Europe co-founder Lizzie Graham wins World Parkinson Coalition award
Parkinson’s Europe co-founder Lizzie Graham has won a World Parkinson Coalition (WPC) award for her contribution to the Parkinson’s community. Lizzie is one of four people set to receive the Robin Elliott Award – which is given out every three years to individuals whose efforts best embody the goals and ethos of the WPC. She will be presented with the award in a ceremony at the World Parkinson’s Congress, which will be held in Barcelona later this year. Commenting on the news of Lizzie’s award, Parkinson’s Europe President, Veronica Clark, said: “Lizzie is Lizzie, and we love her for who she is and what she has done for us all – for people with Parkinson’s past and present and, I’m sure, future.” Lizzie co-founded the European Parkinson’s Disease Association (renamed Parkinson’s Europe last year) in 1992. She has since held several roles within the organisation – including secretary general and…
Study explores predictors of cognitive impairment in Parkinson’s disease
Cognitive impairment can affect some people with Parkinson’s – and may greatly impact their quality of life. Now, researchers in China have examined the possible risk factors for cognitive impairment in those with the condition. The study analysed data from 409 people with Parkinson’s within two years of their involvement in the Parkinson’s Progression Markers Initiative (PPMI) – an international study that follows people with and without the condition over time. The participants, who were newly diagnosed and experiencing normal cognitive function at the start of the research, were studied for at least five years. Published in ‘Frontiers in Aging Neuroscience’, the results indicate that older age at onset, high blood pressure and worse baseline motor symptoms may be among factors that could contribute to an increased risk of developing cognitive impairment. The researchers cautioned that “a larger sample and much more comprehensive assessment, and prolonged follow-up, will be required”.
Could frailty be a potential risk factor for Parkinson’s disease?
Frailty can refer to a reduction in physical function, and its attributes – including a slow walking speed and weak grip – are commonly experienced by people with Parkinson’s. Until now, there has been limited insight into the link between frailty and the risk of developing the condition over time. This is what led researchers at the Huazhong University of Science and Technology in China to analyse data from a large UK study, which was gathered over a 12-year period. Published in JAMA Neurology, the analysis found that frailty may be linked to an 87% higher risk of developing the condition. Commenting on the results, the researchers said: “These findings indicate that physical frailty is a potential risk factor for [Parkinson’s], and the assessment and management of frailty might have clinical significance in the at-risk population.”