The perception that COPD is an individual's own fault is inappropriate and needs to be changed. A new website will help change traditionally held attitudes to COPD, writes Muiris Houston, Medical Correspondent.
Mike is typical of the patient with moderate to severe COPD attending every general practice in the Republic. In his late 60s, he will visit the surgery when he is well, but will often require a house call when his breathing flares up.
A 40-a-day cigarette smoker from the age of 15 until he gave up five years ago, he adopts a stoic attitude to his "bronichals".
Life has never been easy for him; he came from a poor background and his job as a labourer means he never progressed beyond the well-kept council house he and his wife live in.
He takes a number of inhalers on a regular basis and is due his annual flu shot, which he hopes will prevent some of the respiratory infection that tips him over the edge every winter.
Mike is getting close to the point where he will need home oxygen. Recently he was given a diuretic (water tablet) to help deal with the heart failure precipitated by his chronic lung disease.
'Mike' is just one of thousands of Irish people with COPD (see panel), a condition which has existed in somewhat of a backwater for years. Although common - it affects up to 10 per cent of the adult population and kills 300,000 people in Europe every year - it has suffered on two counts.
Because most cases occur in poorer people and are caused by cigarette smoking, it has been seen as a "self-inflicted" illness. And because there is no drug yet available that can alter the natural course of the disease, doctors often feel helpless in dealing with COPD patients, leading to a discernible therapeutic nihilism on their part.
"The negative image of many respiratory diseases - a feeling that it is the individual's own fault and that they are poorly responsive to treatment - these are inappropriate conclusions and we do not agree with them," Prof Walter McNicholas, consultant respiratory physician and immediate past president of the European Respiratory Society, says.
He points out that lung disease causes a significant economic burden in terms of time lost from work and that COPD is a major contributor to the €48.3 billion cost of lost work days across Europe.
The Republic has the highest death rate from lung disease in the 25 countries of the enlarged EU. And our death rate from lung disease is twice the EU average.
Concerned at the poor quality of care offered to patients with COPD, the European Respiratory Society (ERS) and the American Thoracic Society (ATS) recently came together to produce new COPD management guidelines.
The document is novel, in that it is web-based with two components: one for the healthcare professional, promoting the latest advances in disease management; and one for patients, which lays out practical information on all aspects of COPD.
The new website - www.ersnet.org - is available in five European languages and hopes to inform the two-thirds of COPD sufferers who have yet to be diagnosed.
A frequently asked question section deals with issues such as: "Is it too late to stop smoking?", "What is the connection between COPD and sleep?" and "Is it safe for me to fly?" The website also has in-depth information on the role of drugs - such as bronchodilators and anti-inflammatory agents - and how they work. It also shows how exercise can improve the quality of life of patients.
The ATS/ERS initiative emphasises the role of GPs in managing COPD - research in the Netherlands found that specifically looking for cases in primary care led to a three-fold increase in the pick-up rate for the disease.
In a section detailing the importance of rapid action when a patient's condition deteriorates, the guidelines emphasise the benefit of early intervention with steroids and the importance of treating patients to call for help early in an exacerbation.
Doctors from St James's Hospital in Dublin presented research at the ERS Congress in Glasgow last month outlining the success of a dedicated ventilation service for people with severe COPD.
A non-invasive ventilation (NIV) service, introduced in 2002, resulted in a reduction of in-hospital death rates from 24.5 per cent to 4.6 per cent after one year.
Most of the patients treated were extremely ill and might otherwise have required sedation, the insertion of an endotracheal tube and a lengthy stay in the hospital's intensive care unit (ICU).
"In this context, the reduction in three-month mortality from 35 per cent to 15 per cent is particularly significant," the authors noted in their presentation.
Prof Luke Clancy, a consultant respiratory physician at St James's, says they have now extended the availability of NIV to patients at home.
By establishing a respiratory assessment unit at the hospital, patients can now be sent home on ventilators, using the non-invasive technique.
"A physiotherapist and a clinical nurse specialist visit patients at home, starting the day after discharge, so that they are given maximum support in managing NIV," he says.
Clancy also runs one outpatient session a month for COPD patients using NIV.
The St James's initiative is a practical example of the new hope being offered to patients with chronic lung disease, for so long the forgotten consumers of our health service.