Foreword

Imagine coughing day after day. For years, you convince yourself that it is normal—a consequence of getting older, or perhaps it is just the cigarettes or the pollution in the air. But beneath the surface, your lungs are silently deteriorating, and the air does not flow as easily as it used to. Then, one day, you receive a diagnosis you have never heard of: chronic obstructive pulmonary disease (COPD). And, by the time you learn the name, it is often too late.

COPD is a progressive, life-altering condition with no cure, and it is the third leading cause of death globally. Yet, it can be prevented if only caught in time.

Unlike other major chronic diseases (e.g., heart diseases and diabetes) and cancer, COPD remains shockingly underrecognized by both the public and policymakers. A disease that steals the breath of 36 million Europeans and accounts for 6% of total healthcare spending in the European Union falls off the decision-makers’ radar.

Lung health is at a critical juncture, with COPD representing one of the most significant challenges in public health. Despite this fact, there has been no significant action over the past decade to promote COPD prevention or optimise COPD management and treatment pathways. This report confirms the current situation: the number of individuals living with COPD in Europe has increased, there has been minimal progress in early diagnosis, care, and prevention, and the availability of best practices remains limited and not widely accessible to patients.

The EFA report on minimum standards of care for COPD patients in Europe not only depicts the current situation for COPD patients, but it is also a call to action. To halt COPD, policies must focus on prevention of disease and on prevention of exacerbations and deaths. It is high time to raise the bar for COPD standards of care by prioritising early detection, removing the stigma associated with seeking help, and establishing equitable, high-quality care for everyone affected. Moreover, it is necessary to invest in research to identify biomarkers for very early diagnosis and a cure for COPD.

EFA and our community of members—the patients’ organisations—are ready to stand with policymakers, healthcare providers, and all stakeholders to break the cycle of neglect. We refuse to let smoking-related stigma or lack of awareness hinder early diagnoses and improved care. Together, we can ensure that COPD is no longer a forgotten condition but a central indicator to measure health equity and ultimately improve the sustainability of healthcare systems across Europe.

This report is a powerful tool in the journey to halt COPD. It deep dives into the status of prevention, awareness, and access to care, as well as access to digital health solutions in Europe. It provides a comprehensive and synoptic view of the management of COPD in 19 different countries, thereby facilitating the identification of trends and gaps, as well as national best practices and solutions to improve the patients’ quality of care.

This report would not have been possible without the knowledge and participation of the EFA COPD Working Group, the #EFACommunity of members, and the tireless volunteer patients and representatives who, despite daily COPD struggles, have made this project real. Our gratitude also goes to our partners and corporate sustainable funding partners, whose commitment has laid the foundation for this essential advocacy work. Let us move forward together to ensure that COPD patients in Europe receive the voice, attention, and care they deserve to #KeepBreathing.

Executive summary

Chronic obstructive pulmonary disease (COPD) is a preventable chronic condition that causes persistent, progressive airflow obstruction [1]. If left untreated or poorly managed, COPD can severely limit daily activities and lead to hospitalisations and death.

COPD is the third leading cause of mortality and is responsible for 6% of all deaths globally [2] [3]. In Europe, there are more than 36 million patients living with COPD [4]. Despite its significant impact on healthcare, public policies often overlook COPD and its overwhelming burden [5] [6].

The aim of the EFA report on minimum standards of care for COPD patients in Europe is to provide a comprehensive picture of the access to optimal care for COPD patients in 19 European countries (Austria, Belgium, Bulgaria, Czech Republic, Finland, France, Germany, Iceland, Ireland, Italy, the Netherlands, Poland, Portugal, Serbia, Spain, Sweden, Switzerland, Turkey, and the United Kingdom). The topics covered by the report are: epidemiology, early diagnosis, primary and secondary prevention, access to care, societal and personal costs of COPD, and research. The findings prompted EFA to develop policy recommendations to implement minimum standards of care for COPD patients in Europe.

EFA community of member organisations encourage policymakers to place COPD at the forefront of health agendas to effectively address it as a critical healthcare and sustainability issue.

Summary of the main findings

The burden of COPD on European countries

COPD places a considerable burden on healthcare systems, with annual direct costs of €38.6 billion, corresponding to 56% of the total cost of treating respiratory diseases and 6% of total healthcare spending in the European Union [7]. Lung health programmes, including public health initiatives for early COPD detection and prevention, as well as comprehensive COPD care management plans, effectively reduce the burden of COPD by increasing early diagnosis and reducing mortality [8].

The direct and indirect costs associated with COPD have steadily increased over time, mainly driven by poor pharmacological and non-pharmacological management of the condition. Hospitalisation costs range from €1,316 for mild COPD to €8,472 for severe COPD [9]. Indirect costs, largely due to decreased productivity and early retirement of patients, outweigh direct costs by over 60%. In addition, hidden costs related to informal caregiving and out-of-pocket expenses further impact patients and families, particularly those with lower incomes.

The EFA report found that only a few countries implement effective strategies for reducing COPD costs, and often they exist only in certain regions within a country.

 

Disease awareness and Prevention

Limiting exposure to risk factors, primarily cigarette smoking and environmental pollutants, can largely prevent COPD.

Essential strategies include increasing access to smoking cessation programmes, incentivising primary care physicians to promote quitting, and implementing comprehensive smoke-free policies, also considering the rising threat of vaping among youth. Moreover, countries should adopt measures to improve outdoor and indoor air quality and mitigate the impact of climate change through legislation that promotes healthier indoor environments, pollution reduction measures and measures to protect at-risk individuals from the effects of climate change.

 

Early detection and diagnosis

Early diagnosis of COPD is essential for halting disease progression and improving long-term outcomes. Patients diagnosed with mild COPD may not experience a reduction in life expectancy compared to healthy people [10]. On the contrary, 75% of patients who were initially misdiagnosed went on to develop moderate to severe COPD, thereby increasing the risk of death [10] [11].

Unfortunately, COPD often remains undiagnosed due to a lack of awareness and limited access to simple diagnostic tests like spirometry.

National and regional policies should therefore establish proactive early detection policies that include public awareness campaigns and spirometry screening for people at risk.

Furthermore, research into the pathophysiology and biomarkers of COPD could further facilitate early diagnosis, especially for nonsmokers [12]. EU funding should prioritise research on the development trajectories of chronic lung disease and for the identification of new biomarkers for very early diagnosis.

 

Access to COPD care: A fragmented picture

Along with early diagnosis, access to optimal care for COPD patients is the second pillar to prevent the progression of COPD. Regional and local differences hinder access to care, with patients living in rural and less populated areas facing the highest inequality in receiving adequate healthcare compared to those in more urban or populated areas.

EFA’s report reveals profound health inequalities, as not all patients with COPD have guaranteed access to healthcare, including personalised management plans for all COPD patients and access to vaccination.

 

Active living and improving quality of life

Maintaining an active lifestyle is crucial for improving quality of life, yet many patients struggle with physical activity as a consequence of decreased lung function, this leads to worse disease control and negative effects on mental and physical health [13]. Patients’ organisations propose community-based programmes to promote active living, but they require more structured funding to support these initiatives.

 

Digital health solutions for patients with COPD

Digital health solutions have the potential to enhance access to care, treatment adherence, and empower COPD patients to take an active role in their own care.

Patients, particularly those of advanced age, are more comfortable using familiar technologies, such as smartphones [14]. Moreover, factors like digital literacy continue to impact access to telemedicine. Digital health initiatives should be designed to align with patients’ preferences and should not replace in-person interactions with healthcare professionals [15].

 

The impact of Covid-19 on the care of COPD patients

COPD patients are more vulnerable to developing severe respiratory infections. Moreover, the restrictions due to the pandemics increased the feeling of isolation and hindered access to follow-up visits. The main impact of the pandemic on COPD care was the delay in diagnoses, after the pandemic years, the number of newly registered COPD patients decreased by 44%. Moreover, as a consequence of the increased demand for pulmonary rehabilitation for patients recovering from Covid-19infection, COPD patients experienced restrictions in accessing such important therapy.

The project

Transparency

November 2024

© EFA, European Federation of Allergy and Airways Diseases Patients’ Associations.

EU Transparency Register Number: 720047092329-73

Written by Daniela Finizio and Roberta Fabiani, Scientific Communication Srl, Naples, Italy.

Edited by Isabel Proaño Gómez, EFA Director of Policy and Communications.

Project managed by Agata Papotto, EFA Project Manager.

Medical Advisor: Prof. Alessandro Vatrella, Full Professor of Respiratory Medicine, Department of Medicine Surgery and Dentistry “Scuola Medica Salernitana”, University of Salerno, Italy.

We extend our heartfelt gratitude to the EFA COPD Working Group Members for their invaluable insights and national perspectives, which have shaped this report. Our deepest thanks go to the volunteer patient experts from Associação Portuguesa de Pessoas com DPOC e Outras Doenças Respiratórias Crónicas (Portugal) and representatives from Österreichische Lungenunion (Austria), Fédération Française des Associations et Amicales de malades, Insuffisants ou handicapés Respiratoires (FFAAIR, France), Samtök lungnasjúklinga (Iceland), COPD Support Ireland (Ireland), APS Respiriamo Insieme (Italy), Federación Española de Asociaciones de Pacientes Alérgicos y con Enfermedades Respiratorias (FENAER, Spain), Riksförbundet HjärtLung (Sweden), LongFonds (the Netherlands), and KOAH Hastalari Derneǧi (Türkiye). Their collective vision and commitment have been invaluable to this initiative.

 

Acknowledgements

EFA is thankful to its sustainable corporate partners Roche and Sanofi and Regeneron Alliance for their unrestricted grants 2023 for the COPD Standards of Care project that made this Report possible.

EFA is thankful to its sustainable corporate partners AstraZeneca, Roche and Sanofi and Regeneron Alliance for their unrestricted grants 2024 for this COPD Beyond Care project.

 

Aims and methods

This report is an update of the EFA Minimum Standards of Care published in 2013. It focuses on early diagnosis, primary and secondary prevention, access to care, and pulmonary rehabilitation, as well as emerging needs such as the persisting negative impact of the Covid-19 respiratory pandemic on access to care for COPD patients and the potential of digital healthcare solutions to improve access to care for patients with COPD. The report evaluated data from 19 countries (Austria, Belgium, Bulgaria, Czech Republic, Finland, France, Germany, Iceland, Ireland, Italy, Poland, Portugal, Serbia, Spain, Sweden, Switzerland, The Netherlands, Turkey, and the UK).

The 2024 Minimum Standards of Care for COPD Patients in Europe aim to achieve the following:

  • Provide an assessment of the current standards of care for COPD against EFA’s 2013 minimum standards of care recommendations, thereby highlighting successes, gaps, and best practices;
  • Foster a better alignment between the societal and individual burden of COPD and the attention and investment it receives in Europe;
  • Empower the COPD community with data and recommendations necessary to pressure health authorities for improved prevention and care.

For data collection, we used a three-phase multifaceted approach. First, we conducted a desk review to collect state-of-the-art data on COPD epidemiology, socioeconomics, and research. We then compared the results with those from a survey and interviews with national patient organisations. Finally, two workshops with patients’ representatives further consolidated the results.

The findings provided an overview of the implementation of COPD standards of care in Europe, as well as trends among national and international policymakers and health authorities.

References

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2. OECD. Realising the Potential of Primary Health Care. 2020.

3. Marshall DC, Al Omari O, Goodall R, Shalhoub J, Adcock IM, Chung KF, et al. Trends in prevalence, mortality, and disability-adjusted life-years relating to chronic obstructive pulmonary disease in Europe: an observational study of the global burden of disease database, 2001–2019. BMC Pulmonary Medicine. 2022;22:289.

4. Benjafield A, Tellez D, Barrett M, Gondalia R, Nunez C, Wedzicha J, et al. An estimate of the European prevalence of COPD in 2050. European Respiratory Journal. 2021;58 suppl 65.

5. Stolz D, Mkorombindo T, Schumann DM, Agusti A, Ash SY, Bafadhel M, et al. Towards the elimination of chronic obstructive pulmonary disease: a Lancet Commission. The Lancet. 2022;400:921–72.

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9. Rehman AU, Hassali MAA, Muhammad SA, Harun SN, Shah S, Abbas S. The economic burden of chronic obstructive pulmonary disease (COPD) in Europe: results from a systematic review of the literature. Eur J Health Econ. 2020;21:181–94.

10. Chen C-Z, Shih C-Y, Hsiue T-R, Tsai S-H, Liao X-M, Yu C-H, et al. Life expectancy (LE) and loss-of-LE for patients with chronic obstructive pulmonary disease. Respir Med. 2020;172:106132.

11. EFA. EFA 2019 Active Patients Access Care. Brussels, Belgium: European Federation of Allergy and Airways Diseases Patients’ Associations; 2019.

12. Agusti A, Faner R. Lung function trajectories in health and disease. Lancet Respir Med. 2019;7:358–64.

13. Rodriguez MR, Small M, Fermer S. Real World Burden of COPD: Employed vs Not in Paid Employment Patients. JOURNAL OF HEALTH & PRODUCTIVITY. 2013.

14. Socha-Dietrich K. Empowering the health workforce to make the most of the digital revolution. OECD Health Working Papers. 2021.

15. EFA. The asthma and COPD patients’ digital Journey in Europe. European Federation of Allergy and Airways Diseases Patients’ Associations. Brussels, Belgium; 2022.

Next chapter

What is COPD