Disease awareness

The impact of COPD extends far beyond individual patients to families, businesses, and society. Despite this, there is a lack of awareness about COPD among professionals and policymakers who may act against it. Consequently, COPD is not considered a priority. A patient from the French patient association stated: “The doctors and even the patients don’t care about COPD, and the public is not aware of COPD. Why should politicians care?”.

COPD awareness should target a variety of figures and settings (Figure 7). Patients’ associations have traditionally played a huge role in increasing disease awareness through various initiatives and campaigns (Table 2) such as the World COPD Day, which is organised at the national and European level, in collaboration with pulmonologists and other healthcare professionals.

Based on the replies to EFA’s survey, health literacy among the general population is still an issue, particularly in countries with low education levels, as reported by Turkey. Awareness of the risk of smoking (cigarettes or e-cigarettes) is not yet fully widespread in some countries (Austria, Portugal, and Turkey), and the use of e-cigarettes is increasing among the younger population. Interestingly, the COVID-19 pandemic played a role in increasing public awareness of the importance of lung health, thanks to the fact that respiratory infections were at the centre of the media discourse. In some countries, namely Ireland and Sweden, investments in healthy lungs have increased. For example, Sweden has invested in nationwide medical education on lung health.

Increasing awareness of COPD will have a positive impact at all levels by improving early diagnosis, reducing the stigma tied to COPD, improving quality of life and quality of care, and ultimately reducing the societal burden of the disease.

Figure 7. Awareness of COPD: needs and targets

Patients with COPD

Treatments and self-management

At-risk population

Symptoms and risk factors

National Health Authorities

Evidence-based management guidelines

Healthcare providers (in particular primary care physicians)

Early diagnosis

Policy makers

Social and economic burden of COPD

Society as a whole

What is COPD

Table 2. Examples of disease awareness actions organised by EFA members

The Swedish Heart and Lung Association – Lung Month

November is the Lung Month. Around the country, the Swedish Heart and Lung Association focuses on lung disease, diagnosis, treatment and rehabilitation. Local associations arrange lectures, meetings and other activities throughout Lung Month.

Icelandic Lung Association Reykjavik Marathon

Partnership with the Reykjavik Marathon.

Longfonds – COPD risk test

Online tool that allows to see whether you are at-risk of COPD.

COPD Support Ireland Love Your Lungs

In collaboration with the Coalition of Irish Lung Health Charities. A five point advocacy campaign launched during the 2023 World Lung Days.

COPD Patients’ Society of Türkiye

The “Healthy Future March: Breathe, Be Breathe” project, aims to draw attention to the importance of early diagnosis in COPD. With this project, the real steps that people take in their daily lives will come together in the digital environment and turn into a virtual tour of Turkey. For every 1,000 steps taken by project supporters, 10 TL will be donated to the COPD Patients Association.

FENAER – Madrid Respira

“Yo Lucho Contra La EPOC”: Collective awareness campaign for World COPD Day (2021).

FENAER asks for the collaboration of patients with COPD, family members and caregivers to create a large mosaic of faces that will be the image of the commemoration of World COPD Day.

The mosaic composed an image that reflects themotto of the campaign: “I fight against COPD.”

With this campaign, the Federation wants to involve patients, family members, caregivers, friends and health professionals in this campaign, the people who know most closely and most intensely the difficulties that a patient with COPD faces day after day.

Respira – World No Tobacco Day

Awareness digital campaign about the importance of quitting smoking, with the theme “Breathe MORE CLEAN AIR, breathe in LESS TOBACCO.” The initiative is part of World No Tobacco Day, which is celebrated on May 31st and is made up of contents and testimonials campaign for the social networks of Respira and the Portuguese Lung Foundation and a webinar with the theme “MORE LIFE LESS TOBACCO: Quit smoking, we can help!”

Respira – Living with COPD

This initiative is intended to raise awareness of the impact of COPD on people’s lives, stressing the importance of prevention and early diagnosis. The Amoreiras Shopping Centre hosted an exhibition to raise awareness of the social weight of the disease and a spirometry screening action.

FFAAIR – Tour de France COPD 2023

This Tour de France COPD 2023 is an initiative intended to raise awareness of COPD among the general public and to encourage COPD patients of the benefits of exercise, to encourage them not to isolate by participating in a national event and to join a patient association.

This event brings together several hundred respiratory patients from all the cities and countryside of France. During the week, everyone will walk or cycle at home, at their physiotherapist, in their rehabilitation centre or with their local association. All types of bicycles are allowed.

FFAAIR – SPEAK UP FOR COPD Campaign

SPEAK UP FOR COPD is a digital campaign intended to raise awareness and understanding of COPD amongst policymakers and healthcare decision makers by amplifying the voices of patients, the COPD community and the public. The goal is to make COPD a public health priority.

Lungenunion Austria – How fit are your lungs

The Austrian Lung Union launched the 10 days awareness and education campaign “How fit are your lungs?” taking place throughout Austria. The campaign focuses the importance of lung function measurement (spirometry) is for early diagnosis of respiratory diseases. Free spirometry is available on site.

“Governments spend little money to promote disease awareness.”

COPD Patient, Austria

“Improving quality of life cannot be done alone. It should be a joint effort at national and EU level.”

COPD Patient, Portugal

“People are not sufficiently aware of COPD and tend to underestimate the consequences of the condition, including the effects on other organs.”

COPD Patient, Italy

“The Covid pandemic increased awareness of healthy lungs (although this is now beginning to decline again).”

COPD Patient, The Netherlands

“Authorities should support patients better and provide more education.”

COPD patient, Italy

Box 6

The smokers’ stigma: A barrier to optimal treatment

People living with COPD are often associated with the stigma of having a self-inflicted disease due to smoking, but smoking is not the only cause of COPD.

The “smokers’ stigma” negatively impacts the quality of care for patients with COPD. Even healthcare professionals may unconsciously give up on patients, particularly when interacting with those who are unwilling or unable to quit smoking. Furthermore, a paper published in The Lancet reports that in the UK it is standard practice to refuse current smokers with COPD access to potentially life-saving domiciliary oxygen on the grounds of fire safety, rather than advising patients to simply not smoke in the same room [2].

Smokers may tend to accept their symptoms as a consequence of their behaviour, and they may even feel they do not deserve to be treated. As a result, they may not seek additional support from their treatment plan, even if it is not effective for them.

Prejudice against COPD patients may also account for the underfunding of COPD research compared to less stigmatised diseases such as cancer. Despite a greater burden, in 2019, COPD got 96% less public funding than cancer. In the USA, COPD received 96% less funding than cancer by the government, despite accounting for 64% more lost disability-adjusted life years [2].

Breaking the stigma by better communicating the varied underlying causes of COPD could improve quality of care and increase compassion, support, and funding.

[Contrary to the experience of patients with lung cancer] Patients with COPD described encounters with gatekeeping generalist health care professionals who did not recognise or understand their disease. [1]

Improving Care and Awareness in Austria (German)

Learn about the COPD Patient Charter from the Austrian Lung Union to enhance understanding and care for COPD patients. It focuses on early diagnosis, personalised treatment plans, and reducing stigma.

Recommendations

Investing in Lung Health through Public Health Initiatives

Since COPD is a preventable disease, investing in lung health requires public health policies and actions aimed at preventing risk factors exposure and improving health literacy. Both angles, legislation and education, are fundamental to decrease the prevalence of COPD and improve healthcare outcomes.

At national level:

Disseminate information on COPD risk prevention: Support the dissemination of information on the prevention of risk factors for COPD, through public health measures aimed at increasing health literacy.
Adopt and enforce public health laws to protect lung health: Implement and enforce public health legislation to protect lung health, including measures to reduce smoking and vaping, limit exposure to second-hand smoke for vulnerable groups and groups-at-risk, and offer free-of-charge support for smokers who wish to quit, including accessible smoking cessation programmes.
Reduce outdoor air pollution and provide public information: Implement ambitious measures to tackle outdoor air pollution and improve access to public information on air quality, with advice specifically addressed at vulnerable groups such as chronic respiratory disease patients, especially in areas impacted by exceeding air pollution levels, such as big size cities, industrial and mining areas and regions dependent on the burning of fossil and solid fuels.
Improve indoor air quality: Adopt a comprehensive framework to reduce indoor air pollution, including national and local schemes for health-based renovations (i.e., incentivising renovations in buildings where COPD patients live in), ventilation improvements and building maintenance.
Prioritise measures to reduce the impact of climate change related risks on COPD patients: Prioritise actions towards vulnerable populations, like people living with COPD and reduced lung function. Such actions should include early warning systems, healthcare systems and information plans to address risks such as wildfires and floods, expand green areas in urban environments to combat heatwaves, and reinforce civil protection mechanisms.

At European level:

Strive for a ‘Tobacco-Free Generation’ by 2040: Escalate efforts to achieve a tobacco-free generation before 2040 through additional restrictions on the commercialisation and use of smoking and vaping products, and by expanding the enforcement of smoke-free environments to all indoor and public spaces, and private spaces where children are exposed.
Align EU air quality legislation with WHO standards: Align European air quality legislation with WHO ambient air pollutant standards and ensure effective implementation at the national level.
Propose harmonised indoor air quality measures: Harness scientific evidence to propose basic harmonised measures to address indoor air quality standards and performance.
Act on the WHO/Europe Budapest Declaration Commitments on Environment and Health: Act on the commitment made in order to address the environmental and climate crisis that affect lung health.
Set minimum standards for civil protection services and promote research on the impact of climate hazards on lung health: Propose minimum standards for civil protection services and for information during climate emergencies that affect air quality. Promote research on the impact of climate hazards on lung health, particularly on people with chronic respiratory diseases.

References

1. Lippiett KA, Richardson A, Myall M, Cummings A, May CR. Patients and informal caregivers’ experiences of burden of treatment in lung cancer and chronic obstructive pulmonary disease (COPD): a systematic review and synthesis of qualitative research. BMJ Open. 2019;9:e020515.↩

2. Mathioudakis AG, Ananth S, Vestbo J. Stigma: an unmet public health priority in COPD. The Lancet Respiratory Medicine. 2021;9:955–6. ↩

Previous chapter

Cost of COPD

Next chapter

COPD Prevention

Disease awareness

Disease awareness