Innovating in Parkinson’s Disease

Now in its third year, Solvay’s International Forum on Advanced Parkinson’s Disease is continuing to grow in both size and stature. For the 2008 Forum, which took place in April in Seville, Spain, more than 200 delegates from 24 countries attended from as far afield as the US, Russia and Australia – approximately double the number that attended the first Forum in Portugal two years ago. The topics this year again covered the latest research into the pathology and development of Parkinson’s disease (PD), and discussed the different treatment strategies available for those who have suffered with this condition for many years.

The event was opened by Stephen Pickard (Belgium), President of the European Parkinson’s Disease Association (EPDA), which has 39 member associations from 33 countries, representing more than 100,000 people. Pickard spoke of the latest initiatives to raise awareness of PD and improve the lives of those who are affected by it. One of the major focuses of the EPDA is to empower people with PD and their carers by providing information about the disease so they can understand what is happening and how the treatments are meant to work, and know what to expect and what questions to ask their doctors.

The first scientific session was chaired by Castro Caldas (Portugal) and examined the long-term underlying pathological processes in PD with José Obeso (Spain), before Mary Baker (UK) set PD and its impact on society in an international context alongside other diseases, both neurological and non-neurological.

In terms of development of PD, most research over the past decades has focused on the early stages of PD and the attendant motor and neuropsychiatric complications. Treatments have advanced such that replacing the striatal dopamine deficit is now no longer the major challenge. Patients are living longer and will face countless more years with later-stage problems including cognitive impairment, dementia and equilibrium difficulties. This is related to a change in pathology, where the characteristic Lewy bodies are now found outside the substantia nigra in other areas such as the amygdala and the ventral temporal cortex. Obeso proposed that rather than being the result of a single insult to the brain followed by a domino or cascade effect, PD is an underlying process that is present all of the time. Although the striatum is most affected, it is not the primary site of pathology of PD – just the initial site. However, deeper understanding of this process – and knowing how and where to intervene – is still lacking.

Baker examined the cost of neurological conditions to society. According to the World Health Organization (WHO), the five major neurological disorders are Alzheimer’s and Parkinson’s diseases, headache/migraine, multiple sclerosis and epilepsy, which together account for 35% of Europe’s total disease burden. The prediction is that within a few decades they will overtake cancer and cardiac disease as a major cause of disability and death. For PD specifically, the majority of the economic cost of the disease is caused by loss of productivity. This loss of independence is even more acute given the societal changes that have occurred in the past 100 years: human lifespan has nearly doubled; since the Great War there has been a decline in the number of single, non-working female relations who can share care duties; and with many European countries now home to people from various diverse communities, there is a need to provide ‘culturally competent care’.

From Health Economics to the Tango
Dr Andrew Lees (UK) chaired the second session, which developed some of the themes of the earlier talks. Speaking first, Richard Dodel (Germany) introduced the difficult but increasingly important topic of health economics and the burden of PD. He was followed by Mariella Graziano (Luxembourg), with a lively talk on the role of physiotherapy in keeping PD patients healthy and able to cope with modern life. Over the last 15 years, health economics has become a big issue across the world as health budgets tighten and authorities focus on evaluating the cost-effectiveness of drugs. There are three categories of cost incurred in medicine – direct, indirect and intangible – and including or omitting one category of costs can have a huge difference on the outcome of an economics analysis.

The ‘gold standard’ of health economic assessments is the comparison study, which is increasingly taking the form of a decision analysis model. Performing a comprehensive economic assessment can highlight areas where costs are generated, which often conflicts with what people assume costs the most. For example, it is often thought that the main costs associated with brain disorders are doctors’ salaries and drug prices, but in fact the greatest factor in the economic burden of PD is the cost of sick leave from work, which combined with early retirement accounts for 40% of the total. Dodel’s data so far indicate that the annual cost of PD is roughly €20,000 per patient, and that treating patients with motor fluctuations or dyskinesias costs double treating those without. However, it is clear that good-quality health economic data are lacking in most European countries.