Charles Kinney, Communications Manager, EFA, argues that the policymakers have a long way to go addressing the reality of life with asthma and COPD
There are hundreds of millions of people with chronic respiratory diseases worldwide.(1,2)
In the European Union (EU) alone, safe estimates of indirect primary and hospital healthcare, the costs of lost production and the monetised value of the disability adjusted life-years amount to over 350 billion.(3) European and international public authorities alike must better shape policy that addresses asthma and COPD patients.
Despite progress being made in the diagnosis and care of patients with asthma and chronic obstructive pulmonary disease (COPD), new research from the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) shows that these diseases are not being adequately addressed by healthcare professionals and public authorities.
EFA’s latest report –Active Patients’ ACCESS Careon asthma and COPD care, diagnosis, prevention and empowerment (ACCESS), reveals that one in six people with asthma is misdiagnosed and that COPD is dramatically underdiagnosed, with misdiagnosis taking, on average, five years to be corrected. In some countries, like Poland, it can take up to seven years. These figures and timeframes are too high and too long and must be reduced. ACCESS finds that one-third of asthma and a quarter of COPD patients have to go to the emergency room at least once a year.
These numbers are, again, simply too high and represent a reliance on emergency care rather than managed care plans coordinated with healthcare professionals. The report, with corresponding country-specific fact sheets, analyses the results of a survey of almost 800
patients in seven countries (Finland, France, Germany, Italy, Poland, Spain and the UK). ACCESS gives a clear picture of patients’ access to diagnosis and care for asthma and COPD and puts forward recommendations to overcome gaps.
ACCESS also takes a closer look at patients’ views of the prevention and support they receive, showing that much more needs to be done by healthcare professionals and policymakers to improve the situation for patients with asthma and COPD.
Mikaela Odemyr, President of the European Federation of Allergy and Airways Diseases Patients’ Associations said:
“The ACCESS care report represents the care patients are getting at the national level. It is not only a snapshot of what is happening in these countries, but also a roadmap and vital tool for healthcare professionals, researchers, caregivers, policymakers and patients themselves.”
Healthcare professionals need to not only make asthma and COPD patients aware of written management plans (a quarter of respondents had never heard of them), but institute, maintain and adjust these written management plans through regular consultations with patients.
Patients are not sufficiently involved in their written action plan and do not have access to asthma and COPD Disease Management Programmes (DMPs). The involvement of asthma and COPD patients in DMPs is currently very low for both asthma and COPD (18%), with fewer than two in ten patients involved. Furthermore, patients are not trained to manage their disease as often as they should: i.e. inhaling correctly is one of the main barriers behind poor adherence.
What is also worrisome is that asthma and COPD patients perceive action plans and access to flu and pneumococcus vaccines as least beneficial in improving their situation compared to other factors mentioned. Public authorities also need to address indoor and outdoor factors that affect asthma and COPD patient health. Two-thirds of asthma and COPD patients surveyed said that authorities are doing too little to protect them from air pollution and nine in ten said indoor air pollution impacts their respiratory health.
However, there is a considerable mismatch between air quality law and implementation at the national level, with several Member States failing to commit to legally binding air quality standards, as ambient air pollution continues to be a major environmental threat to human health. The ACCESS report also demonstrates that patients, second only to their healthcare professional, use the Internet as a source of information (asthma patients (55%) and almost half of COPD patients (39%)).
We are underutilising resources for information and support: only one in three patients report that they have access to patient organisations or other support groups. Patients may be better informed now than ever in the past but do not have sufficient access to support and empowerment.
Finally, the ACCESS report also reveals that further and expanded research is needed and that patient commitment to further research is there. More than half of respondents said they would like to participate in further studies with researchers and healthcare professionals. In some countries, i.e. Finland, the rate of possible further participation (91%/82% of asthma/COPD patients) is even higher.
Ms Odemyr added:
“Clearly we have a long way to go to show leadership and address the reality for many patients with asthma and COPD. The ACCESS report is a very big step in the right direction.”
References
1. ersnet.org. “Respiratory diseases in the world Realities of Today – Opportunities for Tomorrow.” Forum of International Respiratory Societies, https://www.ersnet.org/pdf/publications/firs-world-report.pdf
2. “Chronic Respiratory Diseases.” World Health Organization, World Health Organization, 2019, https://www.who.int/health-topics/chronic -respiratory-diseases#tab=tab_1
3. “The Economic Burden of Lung Disease.” European Lung White Book, European Respiratory Society, 2019, https://www.erswhitebook.org/ chapters/the-economic-burden-of-lung-disease/
