Chronic obstructive pulmonary disease (COPD), is a progressive disease affecting almost 10% of all adults. Currently ranked at number six on the WHO’s mortality list, it is predicted to become the 3rd leading cause of death by 2030 despite remaining an unknown disease to many people. COPD is a condition leading to a constant degradation of lung functions, causing muscles and organs to slowly and steadily suffocate. Unlike asthma, COPD is an irreversible condition that can only be maintained meaning that prevention and a timely diagnosis, plus effective treatment, are all the more important in managing the condition.
In 2010, the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) launched its book on COPD in Europe – Sharing and Caring (Franchi, 2009) issuing a corresponding call to action (EFA, 2010) for Europe and the European Parliament, together with a broad coalition of healthcare, tobacco control and environment stakeholders to address the disease. The book features information on COPD from EFA member associations in 12 countries covering the epidemiology, economic burden, social impact, access to care, available support services, preventive measures and early diagnosis of the disease, as well as specific national successes as judged by patient groups.
Based on this publication, the EFA has, over the course of 2011 invited leading specialists, public health experts and national patient representatives to discuss potential action on COPD with European policymakers from the European Parliament, European Commission and the European Council. The discussions were hosted by EFA in the European Parliament in two separate workshops on 29 June and 9 November 2011, with the former concentrating upon the prevention and diagnosis of COPD, while the latter focused on the care and research of the disease.
Workshop 1: Prevention and diagnosis of COPD
The first workshop was hosted by Sean Kelly MEP (Member of European Parliament) and supported by MEPs Eva-Britt Svensson, Catherine Stihler and Francoise Grossetête. Professor Ronald Dahl, former President of the European Respiratory Society, informed participants of the medical impact of COPD and the available treatment options available. Depending on the severity of the disease, the international GOLD (Global Initiative for Chronic Obstructive Lung Disease) guidelines suggest cumulative measures such as the ‘exclusion of risk factors such as smoking’ and vaccination against influenza, pharmacological treatment, rehabilitation, long-term oxygen and transplantation (GOLD, 2010). Generally, earlier diagnosis of the disease reduces costly treatments and can improve the quality of life for the patient. For instance, participant Michael Wilken, a COPD patient and in dependent coach and management consultant from Hannover, Germany, was diagnosed with COPD in 2004, developing the first symptoms of the disease more than 10 years before his diagnosis. Wilkin’s life is severely impacted by the disease, as he cannot walk fast, use stairs, or walk for more than 100 m if the temperature is below 5 degrees Celsius.
Monica Fletcher, Chair of the European Lung Foundation, highlighted the severe repercussions of COPD for the patient’s family, their working environment and society overall. Addressing the myth that COPD only affected elderly men of a low socioeconomic status, she noted that equal numbers of women are now being diagnosed due to an increasing prevalence of the disease in female smokers. In fact, COPD affects just as many people between 40 – 65 years old, an age group that is otherwise at the peak of its economic and social productivity. COPD severely hampers this productivity—quantifable as €32.8 billion work days lost across Europe, it is even more alarming therefore, that so many patients live in complete ignorance of their condition. In England, for example, 900 000 people are known to have COPD but the estimated prevalence is 3.7 million, implying more than 75% remain undiagnosed (Shahab, 2006).
‘In England, for example, 900,000 people are known to have COPD but the estimated prevalence is 3.7 million, implying more than 75% remain undiagnosed’
Smoking cessation was identified as the most effective treatment in many patients and the best means for prevention of COPD prevalence within society. However, regret was expressed by participants that smoking cessation programmes remained inadequately supported along with the absence of support and reimbursement for healthcare professionals who had helped smokers fight their addiction. Ronald Slootweg, Director of Health Services of Dow Benelux, illustrated his company’s efforts to prevent smoking prevalence within its workforce. Among the measures suggested by the company was the implementation of a non-tobacco day in all of its plants around the world, and rewards for employees who refrained from smoking. Furthermore, as of 1 January 2010, the Dow’s Dutch factory is smoke-free, meaning that employees are required to leave the plant’s site if they wish to smoke. In addition, participants specifically recommended mentioning COPD as a fatal and debilitating condition directly linked to tobacco smoke as one possible means for increasing public awareness. Low diagnosis of COPD has also been linked to general practitioners, who can misdiagnose a COPD patient with asthma or other respiratory conditions.
Workshop 2: Care and research of COPD
The second COPD workshop was co-hosted by Sean Kelly MEP and Karin Kadenbach MEP. Additional participants included representatives from the Polish EU Presidency of the European Council and from the European Commission Services ‘Public Health’ and ‘Employment, Social Affairs and Inclusion,’ as well as partnering health non-governmental organizations (NGOs). COPD patient, Elizabeth Sutton began the workshop by articulating the necessity for an early diagnosis for COPD patients, and her own experience demonstrates that effective treatment can lead to vast improvements in their quality of life. Juliëtte Kamphuis then presented on the behalf of her employer, Birgit van den Bos (former head of an agency which supports comparative clinical trials) a flexible work plan which effectively accommodates for her own chronic lung condition. The plan simultaneously allows Kamphuis to work full hours while providing holiday or time off when air quality conditions are the most severe for patients of chronic respiratory illnesses, leading to an increase in staff productivity.
Professor Jørgen Vestbo from the University of Manchester, UK, and chair of GOLD, highlighted the costs involved for inpatient care due to exacerbation, at an incredible €2.9 billion per year. He emphasized the necessity for individualized therapy sessions for COPD patients to provide an active role in their treatment and therapy strategies. Participants agreed, and its importance was further evidenced in a case of best practice from Finland, where the National COPD Programme within the Finnish healthcare system is geared towards empowering patients to self-manage their disease. Dr. Anne Pietinalho presented the case study, in which the societal costs of COPD were reduced by an astounding 88% in the course of ten years, bringing down the costs related to disability in particular from more than 550 million euros to less than 100 million from 1998–2007. This was achievable through complementing measures, from broad campaigns promoting COPD awareness among healthcare workers and the public, to enhancing multidisciplinary education programmes through seminars and online training tools with specialists, those working within primary and occupational care, as well as doctors and nurses.
The President elect of the European Respiratory Society (ERS), Professor Francisco Blasi, called for more research concerning risks to COPD patients of exacerbations leading to irreversible damage, irrespective of immediate impacts of symptoms. In addition, he added translational research must be complemented by improving the cooperation between specialists and primary care physicians in order to mitigate hospital deaths related to COPD exacerbations.
Dr Miguel Rodríguez, President of the International Primary Care Respiratory Group (IPCRG), emphasized the need for pragmatic studies to assess the effectiveness of COPD care in real life. Randomized control tests (RCTs), he said, often overlook specific patient characteristics, so real life tests could provide useful information for individual patients with co-morbidities. Information and data from everyday consultations may be collected and compiled for different studies which can pragmatically refect the realities gof many COPD patients within different situations and contexts. Returning from the first COPD Workshop, COPD patient Michael Wilken concluded discussions by advocating patient self-help groups, which he said can serve to assist COPD patients avoid depression and promote independent lifestyles and proposed researching potential links between decreasing cases of exacerbations and a patient’s involvement in these self-help groups.
Conclusions and policy recommendations
EFA aspires to aid efforts within the EU to stem the huge economic, social and human burden that COPD presents in the coming years. It is the hope of EFA and workshop participants alike, that the European Parliament can move forward through the compilation of an own-initiative report on COPD. Sean Kelly MEP confirmed his support for an own-initiative report within the European Parliament, but warned that increased awareness among his peers would be required for such a report to be adopted, emphasizing that politics within the European Parliament exists as a reactive process. Constructive proposals from the workshops have the capacity to increase pressure on the EU and promote COPD awareness, attracting more importance and increased political backing.
Since public awareness of COPD is significantly lower than other chronic diseases, such as diabetes, cardiovascular disease, and cancer, Karin Kadenbach MEP, recommended the establishment of local grassroots campaigns to increase pressure on national governments across the EU in order to provide a constructive means for fighting the disease. Through these means, In this way, conditions for COPD patients locally may improve, while efforts at the EU level build momentum. The recent publication of the European Council Conclusions, spearheaded by the EU Polish Presidency in December 2011, provides a much needed boost towards publicizing and highlighting the increasing prevalence of chronic respiratory diseases, including COPD.
Both COPD workshops provided valuable information and facilitated discussion between policymakers and the various stakeholders seeking to counter the societal burdens of COPD. Several recommendations across a range of topics were suggested, including the promotion of smoking cessation involving remuneration for healthcare professionals for their efforts in helping smokers quit the habit and fight addiction. COPD should be included on cigarette packages in the EU firstly to discourage smoking as well as a means to increase public awareness of COPD. The prevention of occupational and passive exposure to certain risk factors, such as cigarette smoke, should be a prioritized by policymakers, an investment into the health and productivity of employees through retaining a healthier workforce. Indeed, employers should consider exercising greater flexibility and providing options for staff with COPD to maintain production and retain their workforce.
In addition to these suggestions, participants in the workshops underscored the necessity to educate healthcare professionals about COPD in order to enhance cooperation between primary care and specialists and streamline correct interpretations of lung function tests. Access to spirometry testing itself should be given to all patients considered to be ‘at risk,’ which should include, as of age 35, all smokers, former smokers, and those with occupational hazards if they have display any symptoms of COPD. In this respect, equal access and provision should be available across Europe to COPD patients in need of oxygen or rehabilitation programs as well as self-help groups. Patients should also be provided with all possible means encouraging them to proactive ownership of disease management to prevent costly and irreversible exacerbations through care tailored especially for patients’ needs as well as the optimization of ways to gauge effects of potential co-morbidities.
Finally, increased biomedical and health research was strongly recommended by COPD workshop participants with the aim of significantly increasing sustainable growth in quality of life for COPD patients in Europe. Research areas proposed during the workshops included: how to reduce the risks of exacerbations; how to improve the cooperation within a multidisciplinary team; real life studies to compliment randomized controlled trials; co-morbidities, such as depression, and other interdependencies such as the impact of patient self help groups. EFA posits these research areas comprehensively address present shortcomings in COPD studies and that opportunities to increase the knowledge base in these specific areas could help to pinpoint further actions to reducing the burden of COPD on European societies. The next step for EFA 2012 is to continue to advocate for the own initiative report on COPD by the European Parliament and arrange opportunities for EFA membership to visit and learn from the Finnish best-practice model to boost the European strategy, halting the COPD epidemic and creating better conditions for patients.