According to Maximilian Kunisch and Giuseppe De Carlo from the European Federation of Allergies and Airways Diseases Patients’ Associations, respiratory patients in Europe need to set the research priorities for asthma and chronic obstructive pulmonary disease (COPD)
A new report by the European Federation of Allergies and Airways Diseases Patients’ Associations (EFA) shows that asthma and chronic obstructive pulmonary disease (COPD) are not being adequately addressed by healthcare professionals and public authorities. There is certainly not sufficient investment in these major chronic diseases, but more targeted research on diagnosis, treatment and prevention can improve the situation for patients living with chronic respiratory diseases in Europe.
One of the ground-breaking conclusions from a patient survey with 774 participants from seven European countries is that asthma and COPD are hugely underdiagnosed and misdiagnosis takes too long to be corrected. The average period of correcting misdiagnosis for COPD is five years in the countries observed.
Receiving care and being under treatment for, on average, five years for a wrong disease is a massive burden, not only for patients and their caregivers but also for healthcare systems.
The report further shows that patients do not feel empowered enough to manage their disease and that they have negative perceptions of the support received from public authorities. Especially when it comes to measures preventing disease development and progression, public authorities are seen as falling short on their responsibilities.
Diagnosis, treatment and prevention as top research priorities
That a patient organisation like EFA has conducted such a study among people with asthma and COPD shows that there is a clear necessity to help patients cope with these diseases at the individual level. The survey also draws attention to the needs of further and expanded research: half of the patients interviewed are concerned about the side effects of treatment.
As a top research priority, therefore, asthma patients point to the need to develop more efficient and effective therapies that are faster acting and pose fewer side-effects. Moreover, creating better diagnostic tests is seen as a crucial research priority by patients, as on average it takes three years to get the first diagnosis of asthma. Improved personalised medicine will additionally help to provide targeted treatments for severe asthma. Patients also tell that trigger factors, such as environment and air quality, and their impact on peoples’ health needs to be better tackled by policymakers as to enable slowing down disease progression and allow for more effective measures to prevent the development of asthma and COPD.
Patient empowerment and self-management is far from being a reality
With one-third of asthma and a quarter of COPD patients ending up in the emergency room at least once a year, patient empowerment and self-management seem far from being the standard: a quarter of respondents had never (never!) heard of written management plans, and those who did, usually were not involved in the decisions being made about their therapy, even if their condition is chronic.
To fill the existing gaps in research but also concerning improving patients’ access to right diagnosis and care, EFA recommends establishing specialised centres in all European countries, equipped with the latest diagnostic tools and specialists for chronic respiratory diseases, such as asthma and COPD. Moreover, patients directly address researchers, asking them to develop better diagnostic tests; a petition that also requires increased funding for research projects in diagnostics and patient registries on asthma.
Supporting this development of an improved environment for diagnosis, care and prevention, EFA and its 43 national organisations, have recently launched a Roadmap, calling on European Union (EU) policymakers to act on reversing preventable allergies and respiratory diseases and reduce the overall burden for patients. During the 2019-2024 legislative term, EFA, therefore, commits to working with the European Parliament and expanding its engagement with the European Commission to:
- INFORM patients, policymakers and other relevant stakeholders to foster empowerment through patient education and literacy; the development, implementation and transformation of digital tools and evidence-based advocacy; and to promote policies that benefit patients.
- Develop policies that PREVENT the risks of becoming a patient or exacerbating existing conditions.
- Ensure equal access to the same high-quality CARE and tools for patients in all Member States.
This roadmap will serve as a guidepost for patient organisations and policymakers to improve the situation for people living with allergies, asthma and COPD in Europe. EFA and the European patient community encourage you to join respiratory patients in this quest. Only by working together, is change possible.
EFA’s recently launched ‘Active Patients ACCESS Care’ report summarises data coming from interviews with 774 asthma and COPD patients from Italy, Finland, France, Germany, Spain, Poland and the UK. It gives a clear picture of asthma and COPD patients’ access to diagnosis and care, as well as public institutions approach to preventive measures and opportunities for empowering patients. More data and information on the report can be found here.
