Could your subconscious mind affect your Parkinson’s treatment outcomes?

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

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.