The ESR spoke with Donna Walsh, executive director of the European Federation of Neurological Associations (EFNA) about how her organisation supports patients with brain disorders and how well patients are informed about the role of radiology in neurology.
European Society of Radiology: What is the overall aim of your organisation and what exactly do you do to achieve this goal?
Donna Walsh: The European Federation of Neurological Associations (EFNA) is an umbrella group representing pan-European neurology patient groups. Our slogan, ‘empowering patient neurology groups,’ encapsulates our goals as an association. We strive to add capacity to our members, allowing them to be the most effective advocates possible in their own disease-specific areas. EFNA embraces the concept of partnership for progress: working at a high level with relevant stakeholders from the fields of policy, medical, scientific/research, industry, patient partners and other key opinion leaders.
ESR: How many patient organisations do you represent? How many members do you have? Who are they?
DW: EFNA is an umbrella organisation comprising 19 predominantly pan-European disease-specific neurology patient organisations. These are Dystonia Europe, Euro-Ataxia, European Alliance for Restless Legs Syndrome (EARLS), European Alliance of Neuromuscular Disorders Associations (EAMDA), European Headache Alliance (EHA), European Huntington’s Federation (EHF), European Multiple Sclerosis Platform (EMSP), European Myasthenia Gravis Association (EuMGA), European Network for Research in Alternating Hemiplegia in Childhood (ENRAH), European Polio Union, European Sexual Health Alliance (ESHA), Guillain-Barre & Associated Inflammatory Neuropathies (GAIN), International Brain Tumour Alliance (IBTA), International Bureau for Epilepsy (IBE), Motor Neurone Disease Association (MND) – Europe, Pain Alliance Europe (PAE), Progressive Supranuclear Palsy Association – Europe (PSP-Europe), Stroke Alliance for Europe (SAFE) , Trigeminal Neuralgia Association UK. As you can see, there are also some national organisations who are associate members and some international groups, in the absence of a pan-European association.
ESR: What are the most common brain diseases in Europe?
DW: Brain disorders are very common and will affect one in three of us during our lifetime. They range from very prevalent disorders such as migraine (affecting up to 15% of the population) to very rare disorders. Most people will have heard of multiple sclerosis, dementia, Parkinson’s disease, epilepsy, stroke, etc. But people often forget that sleep, mood, anxiety, addiction and eating disorders are also disorders of the brain. So brain disorders range from the genetic to the degenerative to the muscular and beyond!
ESR: Brain diseases affect an increasing number of people worldwide. Do you think current European health policies are well suited to tackling the issue?
DW: No. May 2013 was designated as European Month of the Brain (EMOB) by the European Commission to develop recommendations around health policy in Europe which would ensure brain disorders attracted a level of priority reflective of their burden and impact. Currently, revenues from central nervous system (CNS) drugs are predicted to decrease, prompting investors to withdraw their support. Many perceive the CNS disease research area as the most unpredictable and costly, with a high rate of failure. Hence, there exists a dilemma for investors in an area with high unmet need and potential for development, but with high risks. European health policy needs to be changed to ensure that investment in CNS is maintained and increased.
EMOB called for continued support for interdisciplinary research approaches, a more innovative and relevant approach to clinical development, new ways of implementing healthcare solutions, encouragement of data sharing, attracting and aligning public-private investment, rewarding innovative drug development, new technologies and healthcare delivery, and adapting the regulatory landscape. It also called for increased patient involvement and the eradication of stigma – issues of key concern to EFNA.
ESR: Brain cancer in particular affects more and more people. Is there enough emphasis on prevention and early detection in Europe in general?
DW: Kathy Oliver, director of the International Brain Tumour Association (IBTA) says, “As far as we currently know, brain tumours cannot be prevented. The only known causes of brain tumours to be determined to date are exposure to ionising radiation and some very rare, inherited syndromes. It seems that a change of lifestyle will not prevent people getting a brain tumour. So with regard to early detection, the sooner a brain tumour is diagnosed the better, but there is, as far as we know, no point in general population screening as brain tumours are an unpreventable rare disease.”
ESR: Some studies suggest mobile phones have an influence on the development of brain tumours. Has a clear link been established yet?
DW: According to a summary by Cancer Research UK of historic and recent research, it seems unlikely that using a mobile phone can cause brain tumours, particularly as lab research hasn’t shown a biological way this could happen. And rates of the brain tumours in question haven’t seen an increase over time, despite mobile phone use booming. However, it also cautions that there isn’t enough good evidence to say with absolute confidence that no risk exists. So, more research is needed.
ESR: Stroke can be lethal or disabling if not treated within the first six hours. Interventional radiologists can perform endovascular procedures to treat stroke in that time. Do you think people know about this procedure?
DW: According to Manuela Messmer-Wullen of the Stroke Alliance for Europe (and EFNA Board member), a radiologist seeing a patient in the early stages of a stroke can be very effective. However, most stroke patients are initially seen by a neurologist who will first attempt to treat the patient. This can mean that the patient will not see a radiologist in time for such an intervention. “Most people won’t know that a radiologist is able to treat and solve such a big problem, so they won’t ask to be treated this way,” says Manuela. “The problem with stroke is the lack of information and education in how to prevent, recognise and proceed.” Again more awareness is needed on the potential role of radiology in the diagnosis, management and treatment of the various neurological disorders.
ESR: Many European countries face significant health budget cuts, leading to shorter hospital stays and less access to modern equipment. How can patients benefit from state-of-the-art healthcare?
DW: EFNA has a long track record of running workshops for patient advocates on issues such as health technology assessment [HTA] – as well as the wider issues of pricing, access and reimbursement of pharmaceuticals and medical devices. Therefore, we have an appreciation of the need to make innovative drugs and devices available within the constraints of today’s limited resources. We believe that innovation should be rewarded (as I mentioned earlier). But, more importantly, patients and health professionals need to work together to highlight how state-of-the-art healthcare applications can lead to prevention, better self-management, earlier diagnosis, less hospitalisation, etc. And this ultimately saves costs.
Annually, brain disorders cost the European economy almost €800 billion. Many of these costs are indirect. Therefore, investment in treating and managing brain disorders is a smart investment!
ESR: The brain is a complex organ and physicians are only beginning to understand brain disease. What do patients need to hear from their physicians to better understand their pathology? What would patients need to hear from their radiologist, and how can both parties communicate better?
DW: At the Joint Congress of European Neurology, EFNA ran a workshop entitled ‘Brain Disorders: The Communication Challenge’. These disorders really do pose a challenge for a number of reasons.
Firstly, as you mention, the brain and its disorders are complex – so the physician needs to take time to ensure that the patient understands the diagnosis and its implications. Using pictures (or the image itself) can help overcome problems with medical/scientific technology. The patient should also be encouraged to ask questions and the physician should check regularly that they understand. We understand that, often, the patient will not see the radiologist but will discuss the image with the neurologist, oncologist, neurosurgeon or another member of the healthcare team. This can cause difficulties if the patient has a question appropriate to the radiologist.
A second problem is that many patients with neurological disorders are affected by a neurological deficit. These manifest in different ways, depending on the pathology, but can include memory difficulties, slurred/affected speech, problems with processing information, mood swings, etc. Again, this means more time is often needed, as well as the involvement of a case manager, family member or carer.
Finally, as a brain disorder diagnosis often means bad news, it is important for the physician to be honest with the patient and to set realistic expectations. It is also important that the patient is consulted in relation to their treatment/outcome preferences (which often differ from the physician’s) and their acceptance of risk vs. benefit.
ESR: Do you think people have a good idea of what radiology has to offer today in brain disease management?
DW: Traditionally, EFNA has worked closely with our neurologist colleagues at the European Federation of Neurological Societies (now merged with the ENS to form the European Academy of Neurology). However, EFNA has always been aware of the important role radiology plays in brain disorder management, as illustrated by our involvement in the Alliance for MRI. Also, we are increasingly aware of the need for a multidisciplinary approach in the management of brain disorders, which – of course – includes radiology.
However, having spoken to a number of the EFNA member organisations, it seems that while patients are aware of MRI, they are not as aware of its different techniques and applications. So we need to work together to create more awareness of MRI and to dispel many of the myths and misconceptions that may exist.
ESR: Do you think an initiative like IDoR, which focuses this year on brain imaging, can help in this regard?
DW: This year’s IDoR focusing on brain imaging should highlight that radiology also plays a role in the management of brain disorders – and it is not just the domain of neurology. IDoR also falls during the Year of the Brain 2014, which is being coordinated by the European Brain Council, so there are even more opportunities to position radiology in this field.
ESR: What other benefits do you think IDoR could bring?
DW: IDoR should also provide an example of best practice in highlighting collaboration between health professionals and patient organisations. EFNA would like to thank the ESR for including us in the planning for the day.
Donna Walsh is executive director of the European Federation of Neurological Associations (EFNA). She has spent her career working with patient organisations in the neurology sector. Having studied for a BA in journalism at Dublin City University, she spent four years working as communications and information officer with the Migraine Association of Ireland. This led to her first position at the European level, as coordinator for the European Headache Alliance from 2010. In 2012, she was appointed EFNA executive director, and has since worked hard on establishing a new strategic direction for the organisation. She represents EFNA externally on numerous bodies, including the European Society of Radiology’s Patient Advisory Group on Medical Imaging.