Movement Disorders, Parkinson's Disease
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The Involved Patient

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Published Online: Jun 4th 2011
Authors: Mary G Baker
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During the last century, society witnessed human beings almost double their lifespan – a great achievement, but one that also brings its own challenges. Living longer inevitably means that conditions such as stroke, Parkinson’s disease (PD) and Alzheimer’s disease will become more prevalent in the world population. These conditions are difficult to manage well, and if managed badly cause not only distress to the family but also an increase in health budgets, neither of which nations can afford. In recent years, PD has been on the increase and more people are being diagnosed younger – some in their 20s. If these people live their three-score years and 10, they will have PD for a very long time. Management of these diseases therefore requires a whole range of treatments to enable people with chronic neurological disorders to achieve optimum quality of life. The way to do this is to focus on the needs of the patients and their families. We must listen and involve them if we are to meet the challenges of living longer.


The World Health Organization (WHO) can be thought of as a large elephant: slow to get moving but, once it starts to move, capable of clearing everything in its path. Historically, the WHO has focused on communicable diseases – tuberculosis, malaria, smallpox, etc. – but over the past decade it has become increasingly aware of noncommunicable diseases, recognising them as the largest threat to human health for the future. In April 2007, the WHO published a book entitled Neurological Disorders, which covered five major illnesses that in total account for 35% of Europe’s entire disease burden: Alzheimer’s disease, Parkinson’s disease (PD), headache, multiple sclerosis and epilepsy.1

The WHO calculated the economic burden of each of these illnesses on society. The trajectory of brain disease means that within a few decades it will overtake cancer and cardiovascular disease to become the major global challenge. The estimated cost of these illnesses comprises inpatient treatments, outpatient treatments and medication, which are relatively easy to calculate; what has often been missing until now is the cost of social services and the cost to families. For PD, the greatest cost is in lost productivity (see Figure 1); evenwhile people are still in their workplaces, they may be less productive because they are slower and are affecting those around them.

Societal Changes
Over the last 100 years, humankind has managed to almost double the average human lifespan. In 1907 in London, life expectancy was 45 years; it is now over 80 years. Moreover, a little girl born in Tokyo today has a 50:50 chance of living to be 100 years old. As life expectancy increases we will see more people living with PD for a very long time, bringing clinical presentations that neurologists have not seen before.

The role of women has also changed immensely over the last 100 years. At the beginning of the 20th century, all of Europe was affected by two major wars, resulting in the deaths of millions of men, with many women left unable to find a husband. Therefore, maiden aunts and unmarried female cousins were part of the extended family: a structure of caring. This does not exist today. Birth rates across Europe are falling and there is a good career structure for women. This is not to say that women care less for their families, but rather that the family structure of today is very different from the family structure of the past. In the 1920s, a couple in their 80s had 44 female relatives, 14 of whom were not working outside the family. In 2007, a couple in their mid-70s had 13 female relatives, with only three not working outside the home environment. This trend is increasing. These figures point towards a new cost to the healthcare system. A small UK study completed at the end of the 1990s aimed to examine the economic impact of PD by calculating the time and resources taken to care for someone with PD. The cost of a general practitioner overseeing care for someone with PD living in his or her own home was about £5,000 per year. However, the moment that person goes into institutional care, the cost increases to around £18,000 per year.2 There are many reasons why people have to leave their own homes and go into care, including falls, incontinence and loss of cognitive function. If these can be avoided or better managed, this can help keep costs down.

Nevertheless, these facts form the backdrop for the situation with PD: there is a rising number of elderly people throughout Europe and an increasing incidence of brain disease. This situation needs to be optimally managed in order to avoid the terrible distress and huge costs that none of us can afford.

Concerns in Parkinson’s Disease
This backdrop provides both threats and opportunities for society to face. For example, there is a threat to the carers of people with PD. Because carers are a generic group, very few people or groups are passionately interested in them and they are often overlooked. However, one group that does care is the European Federation of Neurological Associations (EFNA), which, in conjunction with the European Parkinson’s Disease Association (EPDA) and Oxford University, is currently developing an index to measure how the quality of life of carers is eroded by caring. This follows on from the development of the Parkinson’s Disease Questionnaire 39 (PDQ 39), a benchmark for quality of life studies for people living with PD, which was developed by the Parkinson’s Disease Society (PDS) in the UK and has now been translated into 80 languages. The aim is to do something similar for the carers of people living with PD. This is extremely important, as many carers do not realise the strain they are under until it is too late. Alongside the Guildford PD Research Group, led by Dr Patrick Trend (The Royal Surrey County Hospital) and Dr Heather Gage (University of Surrey), the aim is to develop ‘modules’ of care that can be taken to families and nursing homes to show how, in very simple terms, quality of life can be improved by helping and strengthening support for carers.

We are also being challenged to change our perception of PD. It is no longer just the ‘shaking palsy’, as described by Dr James Parkinson in 1817. In terms of quality of life, the Global Parkinson’s Disease Survey (GPDS) showed that in six of the most expensive health systems in the world – Canada, Italy, Japan, Spain, the UK and the US – only 17% of the quality of life of a PD person was accounted for by the movement disorder, i.e. slowness and poverty of movement, pill-rolling tremor and all of the medication.3 In fact, 41% of patient concerns were about depression – not necessarily a clinical depression, but rather concerns for the future: work, finances, family relationships, care. Behind this was concern about how the diagnosis was given: the better a diagnosis is given and explained, the better a patient does. Quality of life is also affected by pain, sleep, bowel and bladder control and sexual dysfunction. The GPDS presented a new view of PD: one that shows that PD is considerably more than a movement disorder.

There is a threat to the amount of time a PD patient spends with his or her doctor. The average appointment time across Europe is only 12 minutes. This includes the time it takes the patient to walk in (often slowly), take off his or her coat, get comfortable and initiate conversation. Nevertheless, if you talk to patients about their next appointment, it is clear how much they are looking forward to the opportunity of visiting their doctor; it is a major event. Rapid advances in medical technology also represent a threat if not handled correctly. Within the European framework programme, stem cells account for only 2% of the budget but represent 98% of discussion in parliament. Conversely, the UK was promised a full and frank debate on genetically modified crops, but it never happened owing to media hype and headlines. Therefore, if we are to realise the potential of, for example, over-the-counter genetic testing, it must be supported by appropriate ethics and philosophy. These are challenging topics, and doctors and scientists need support and real understanding from the public in order to be able to state their case to policy-makers.

Such professional influence will help with the impact of European legislation; for example, there was a bill aimed at protecting the health of people living under power lines and using mobile phones that had been passed by the European parliament and was due to be implemented at the national level in April 2008. At the last minute, it was picked up on by the medical community in such diverse areas as radiology, oncology, neurology, paediatrics, orthopaedics and rheumatology. The medical professionals realised that this legislationalso affected magnetic resonance imaging (MRI) scanners. Specialists need to be near them to scan patients, and the proposed legislation would have prevented this. The combined effort of the medical community together with patient groups has managed to stall the legislation for the moment. These types of issue show the importance of debate and involvement of the patient groups, researchers and clinicians who understand them.

New Directions
One of the biggest challenges to progressive healthcare is the influence of the media. In the UK, a survey revealed that 85% of people make their informed choices based solely on information from the media. Therefore, it is important to hold press conferences and to help journalists understand the issues, rather than ignoring them and cutting them out.

With the growth of globalisation comes diversity in population composition. The new challenge is to provide culturally competent care. This necessarily entails an improvement in the dialogue between science and society: to hear the voices of patients and recognise the need for neurologists to lead multidisciplinary teams that can better respond to the needs of their community. This may well entail new models of care, such as those being tested in Nijmegen, The Netherlands, and Tel Aviv, Israel, which involve the patients and their families in the whole process.

Linked with this, patient advocacy groups need to be stronger. They exist to provide good, clear, easily understandable information. The diagnosis of a progressive, chronic illness such as PD has a massive impact on patients that can overwhelm them; it is a watershed in their lives. It is essentially the beginning of a long journey, and patient groups should provide a map. It is very important that information is available, because information helps patients regain control of their lives – and nobody understands what it is like to lose control of their life until it happens to them.

The EPDA has been working to improve care and to help share models of good practice. The Association organises roadshows, with a system of ‘buddying’ between countries. Susanna Lindvall, Vice President of the EPDA, took a team from Sweden to visit Dr András Fazekas and his team in Hungary in 2007, which had a great impact on their management of PD. In 2008, Mariella Graziano, EPDA Secretary, will take a team from Luxembourg to Poland. These types of scheme acknowledge that there is a great deal that specialists can share and learn from one another. The way in which information is presented also needs to be considered. Scientific conferences and presentations are perfect for engaging other scientists, but they are not necessarily right for policymakers. At a European Brain Council meeting in February 2008, attended by members of the European parliament and the European Commission, health economists, healthcare professionals, patients and families, a new presentation style was introduced. The key opinion leaders were asked to present five slides in five minutes. Luminaries such as Professors Wolfgang Oertel, Werner Poewe, Olivier Rascol and Eduardo Tolosa rose to the challenge and delivered excellent soundbites to immediately capture the attention of the policy-makers.

Most people are aware of the need for compliance and adherence when taking medicine, and now there is a new word: concordance. Patients and doctors are supposed to engage in dialogue, working out the best way forwards. A report by Derek Wanless in the UK states:4

  • governments are beginning to realise how critical it is for people to become involved and informed about their own health and healthcare;
  • failure to do so would result in considerably higher healthcare costs;
  • there needs to be investment to help clinicians master skills, knowledge,and attitudes that will enable them to be more patientfocused;
  • equally, there must be investment to help society develop more resourceful patients and enable them to ask the right questions; and
  • one without the other will be wasted effort.

Dialogue means contributions from both doctor and patient. However, despite patients looking forward to their next visit to the consultant, when they go for their meeting they are often at a loss as to what to say. Therefore, the EPDA has begun work on a Parkinson’s Decision Aid to help patients know what the right questions are and enable them to get the best out of their 12-minute time-slot. It is complex: no two people have the same symptoms, and symptoms can vary over the course of the day. Furthermore, people’s expectations of life and of PD vary considerably. The Parkinson’s Decision Aid will help patients understand their diagnosis and their journey. It is being developed through an international working group comprising doctors, nurses, individuals who live with PD, family members, associations and the pharmaceutical industry. The Parkinson’s Decision Aid includes a short (16-page) introductory leaflet, available in 26 languages, and a webbased toolkit.

The EPDA is not alone in undertaking this type of endeavour to help patients cope. Health coaching is a way for patients to help each other. Some of the best help is provided by people who are in the same position as the patient. The British Medical Journal has already recognised this trend and has run an article on it.5

I started working as the Welfare Director of the UK’s Parkinson’s Disease Association more than 20 years ago; since then there have been huge changes in the role of patient groups and the perception of illnesses such as PD. My brief then was to explain to the community what a challenging illness PD is. This is not enough now. Our world has changed, as has our understanding of PD and the pressures faced by neurologists. Medical and scientific communities have to respond to that. Patient advocacy groups have to establish their credibility in order to be accepted at the top tables of policy-making. They must learn to collect evidence and contribute to discussions. Such groups need to understand economic measures such as the Health Technology Assessment. It is very difficult for a patient group to understand that an illness is an economic burden in a health system, but it is essential if it wants to engage in a dialogue with policy-makers. All opportunities and challenges can be met with co-operative work and partnerships, which will increase societal responsibility and encourage neurologists to provide neurological services that are appropriate to the needs of the population that they serve.

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