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 the EPDA 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.
My dad’s diagnosis inspired me to become an Ironman
Ironman athlete inspired by father's response to Parkinson's
24 hours ago
Sir Billy Connolly: Parkinson’s disease is “like a strange animal”
Scottish comedian, actor and musician Sir Billy Connolly has recently discussed his experience of Parkinson’s disease while promoting his new autobiography, ‘Windswept & Interesting’. In an appearance on UK talk show, ‘The Graham Norton Show’, the comedian explained that he had lost the ability to write. He said: “It breaks my heart as I used to love writing letters to people.” Speaking to UK newspaper The Guardian, Connolly added that he thinks the condition is “like a strange animal. One that sits beside you and says, ‘How will you get on without this?’ – before it takes away something else.” Despite these adjustments, Connolly told Norton he has “good days and bad days” with the condition. “It’s creeping up on me and it never lets go,” he said. “I walk like a drunk man and have to have help. So, life is different, but it is good.” Lead image credit:…
New insights on immune cell process and Parkinson’s disease
Insoluble clumps of the protein alpha-synuclein, which can cause damage to brain cells, have been previously linked to Parkinson’s. Now, scientists in Germany, France and the US have uncovered new details on how brain cells respond to these clusters. The researchers discovered that the brain’s immune cells may be able to join together to break down the protein clumps. According to a press release, this was previously unknown. They also found that these neighbouring cells share mitochondria – structures that generate energy for chemical reactions – to help one another. In certain mutations associated with Parkinson’s, this process may be impaired. The researchers hope this insight could inform the development of new therapies. “We have opened the door to a field that will certainly engage researchers for many years to come,” said Professor Dr Michael Heneka, director of the Department of Neurodegenerative Diseases and Geriatric Psychiatry at the University Hospital…
Could analysing skin oil help diagnose Parkinson’s disease?
Parkinson’s disease patients tend to have high levels of oil, known as sebum, on their skin’s surface. Now, a study has suggested that analysing this substance may help when diagnosing the condition. The study revealed that sebum contains significant amounts of genetic material, specifically the molecule ribonucleic acid (RNA). Analysis of RNA contained in sebum – that is, skin surface lipids RNA, or SSL-RNA – could offer insights into a person’s health. Researchers in Japan examined SSL-RNA in men and women with and without Parkinson’s. The results suggested that the SSL-RNA profiles of those with Parkinson’s had “different characteristics” than those without. The researchers then tested whether examining these profiles with machine learning could reveal those who had Parkinson’s – and who didn’t. The team’s algorithm indicated a “relatively robust discriminatory ability,” supporting the further use of SSL-RNA as part of a future “non-invasive” method for diagnosis.