teaser
L Denis
Director Oncology Center Antwerp
Secretary Europa Uomo
Chairman US TOO Belgium
The development of patient support groups began some three decades ago. This was a significant change to what had gone before. The idea was to inform and teach the patient to manage specific problems that exhibited technical complexity, such as stoma care or home dialysis (Stoma-Ilco, Antwerp 1973). This trend continued in the development of local/regional self-help groups which exchanged experiences and education concerning their diseases (US TOO Belgium 1998). These basic movements, following examples in the USA (especially in breast cancer support), developed into national and international associations in the new century. The European Cancer Patient Coalition, Europa Donna, Europa Uomo and many others developed successful activities and projects supported by the professional associations as well as the European Parliament and European health authorities.
Establishment of Europa Uomo
Europa Uomo is the European advocacy movement for the fight against prostate cancer and was officially established in Milan in 2004 with the support of the European School of Oncology (ESO) and the Antwerp Centre of Oncology. It is a non-profit, non-governmental association. Beginning with 12 groups representing their respective countries they formed a confederation where the member groups are autonomous. The 22 member associations fulfill the legally established membership criteria, conduct activities in the field of prostatic diseases and underwrite a Manifesto of 10 points (see Table 1).
It testifies to the practical experience of the prostate cancer patients by promoting quality of life for patients and their families, as referred to in the first point of the Manifesto.
Prostate cancer awareness
Many consider prostate diseases in general and prostate cancer in particular as an inconvenience to elderly men and less of a burden on society. Statistics contradict this opinion. Prostate cancer is the most frequently diagnosed form of cancer in the general population. In men it counts for 25% of all cancers and 10% of all cancer deaths.1 This difference amounts to the cancer’s prevalence and it is estimated that more than 3m prostate cancer survivors lived in the 27 member countries of the EU in 2008. This figure will only increase in time due to the ever increasing age of our population and the introduction of better treatment.
The success of Europa Uomo is due to the increasing awareness of this burden to society and the positive reaction of the professional societies, patient associations and research projects to focus on and publicise the facts of the disease (the Proactive Prostate Cancer Initiative is presented in Table 2). This initiative was organised in Antwerp during Urology Week 2009, supported by statements from Archbishop Tutu of South Africa and President Obama of the USA. The five-point initiative was endorsed by the ESO and the European Association of Urology, and swiftly accepted by the major professional cancer organisations in Europe.
Europa Uomo approves and facilitates this strategy. As patients we accept all evidence-based, updated information and education leading to optimal medical treatment provided by professional partners. Our share in the overall management of prostate cancer consists in active participation in all evidence-based current information and education, leading to holistic patient-centred care.2
This European partnership network is presented in Figure 1. We receive disease information and education, access to clinical trials and treatment, empathy and emotional support and, most important, a voice in European healthcare. Recently, pharmaceutical companies and European health authorities have recognised the active role of patient groups in healthcare projects.3,4 Collaboration with the European Society of Oncology Pharmacy (ESOP) has been established and should be expanded.5
Crucial role of the pharmacist
We consider the role of the pharmacist, whether working in the community or hospital, as crucial in the dissemination of information and education of patients concerning their medication. In our view, the word multiprofessional as a treatment concept is more relevant than just multidisciplinary. It emphasises the need for specific expertise in all aspects of disease management.
The patient facing a diagnosis of cancer is usually bewildered in the acute phase and totally overwhelmed by a number of factors (see Figure 2). Reliable, understandable and straightforward information is the most pressing problem to be addressed. After the general practitioner, we believe that the pharmacist can be of crucial help in this area, for it is accepted that a properly informed patient with some basic knowledge of his situation can save time in the clinical decision-making process.
Most prostate cancer patients suffer from concomitant diseases and know their pharmacist, as many receive medication from the specialist, the general practitioner and at least 30% take Complementary/Alternative Medication (CAM)-products.
It is clear that the interest and advice from the community pharmacist concerning medication and its side effects, lifestyle modification and drug interactions leads to improved quality of life, economic savings for the patient and provider of funds, and professional satisfaction. However, this kind of service is hampered by the sales of over-the-counter drugs; a private, discreet space for counselling a patient is recommended and direct communication with the treating doctors, not forgetting renumeration of services.
Electronic patient files offer great assistance in developing systems to protect individual privacy. These files are now part of a modern hospital registration of patient data. Reports have been made that the medicinal treatment from outside the hospital to entry is subject to 40% lack of correct interpretation.6
The hospital pharmacist needs to be in control of the medication for each individual patient and it takes the discipline of trained teamwork to see to the proper distribution of drugs. This is a good opportunity to evaluate the patient’s consumption of CAM-products and their possible interaction with any given treatment.
From a research point of view, we have entered the era of targeted drugs in molecular medicine, different forms of immunological treatments and pain relief. The latter is still a concern and evidence-based pain relief policies for cancer patients could be improved.7
The hospital pharmacist should, as well as being a patient advocate, be part of the oncology team, as the use of off-label drugs and drug effects in clinical trials – efficacy versus cost – remain unresolved issues.
Progress still to be made
We realise that despite the goodwill and the enormous progress made in the management of cancer, the positive results of research and the support of many, a lot of our ideas remain unfulfilled.
A clear example are the Council Conclusions on Reducing the Burden of Cancer.3 Here, a significant variability in the delivery of services for overall cancer management in the different European countries is accepted as a fact. It is noticeable that prostate cancer is not mentioned in these conclusions. This is a disease that affects one in 10 males in their lifetime, tops all other cancers in incidence in the EU, affects 3m European men and where clinical research opened avenues to prevention and screening, with decreasing risk of mortality from 27 to 44% of the participants.8,9 We hope to correct this omission in the near future.
References
1. Ferlay J et al. EJC 2010;46:765–81.
2. Denis L. PROSTAATinfo 2009;4:16.
3. Council Conclusions on Reducing the Burden of Cancer, 2876th Employment, social policy, health and consumer affairs Council meeting, Luxemburg, 10 June 2008.
4. FP7 Cooperation Work Programme: Health-2011, European Commission, 19 July 19 2010:1–74.
5. Denis L. EJOP 2009;1:19–20.
6. Federaal Kenniscentrum voor de Gezondheidszorg, Continuïteit van de medicamenteuze behandeling tussen ziekenhuis en thuis, KCE reports 131A. Available online at: http://kce.fgov.be/index_nl.aspx?SGREF=5260&CREF=16673
7. Lohman D. INCTR Palliative Care PAX program 2010;vol.9.2:1–4.
8. Roobol MJ et al. Eur Urol 2009;56:584–91.
9. Hugosson J et al. Lancet Oncology online 1 July 2010:1–8.
