What medicines do people with Parkinson's disease want?

Abstract

Parkinson's disease (PD) is a heterogeneous condition that presents variable clinical, neuropathological, and biomarker features. Disease progression can also vary significantly. It is essential to consider this heterogeneity when considering the medicines that people with Parkinson's (PwP) want. Potential PD medicines may be classed as disease modifying (DMT) or symptomatic (ST). The ultimate hope of PwP is that, sooner rather than later, the core of the PD pharmacopeia will provide personalised cocktails of drugs that not only deliver motor and non-motor symptom relief, but also slow, stop and then reverse disease progression. Generally, PwP are less interested in the scientific details, they are more focused on maintaining or improving quality of life. For those people at risk of PD, diagnosis in the pre-motor stage may herald the introduction of new medicines that arrest the progress of the disease before symptoms are manifest. One way to understand the medicines that PwP want is to ask which symptoms are the most bothersome, and target them accordingly. In practice, medicines that present optimal efficacy and convenience, at an affordable price, will be more likely to be accepted. Interactions between researchers and PwP should be encouraged in order to deepen the understanding of each other's needs and motivations. Finally, it is important to remember that PwP are individuals with emotions and concerns. As such, moderation in the communication of prognosis and of the potential of new medicines is essential, so that PwP can maintain hope rather than being misled by hype.