Researchers need to understand that asthma is a disease that can affect all areas of a person's life and is not just a respiratory illness that affects the lungs, said patients in a meeting at the Royal Society of Medicine in London.
Patients attending the meeting also said that family doctors need to do more to educate their patients about asthma, its triggers and treatment in easy-to-understand ways. This will ensure that asthma patients have the best chance of controlling the disease and leading full lives.
Medicine and Me: Asthma Research was a 1-day meeting organised by The Royal Society of Medicine and the charity Asthma UK that brought together patients, their families and carers, researchers and health professionals to discuss, in an accessible way, the key issues surrounding the science of asthma.
Professor Peter Helms, from the University of Aberdeen in the UK, explained that asthma is caused by "a very complicated interaction between environment and genes", while Professor Stephen Holgate, from the University of Southampton, added that "asthma should be seen [as] a disease that affects the whole body – not just a disease that affects the lungs".
One of the main areas of concern for patients was the need for more awareness among scientists that asthma does not just affect a person's respiratory health, but can impact on all parts of their private and family lives, such as where they live, how and where they socialise, where they go on holiday, how they take exercise and where they work.
"It's important that researchers realise the realities of living with asthma," said Jackie Fielding, mother to Michael, a child with severe asthma. She explained that her family had to move house from an area near busy roads to one in a more rural setting because the pollution was triggering Michael's asthma.
Asthma patients also expressed concern about the amount of information on asthma they were given by their family doctors. Indeed, a number of patients said their doctors had given them no information about potential triggers with one patient told to "just take your medication and you'll be OK".
Ivor Cook, a 64 year old with asthma, said he was not aware that infections could cause asthma attacks and only became aware of the link after taking part in an asthma focus group.
"Around 75 to 85% of asthma attacks are caused by infections, with most caused by viral infections," explained Professor Sebastian Johnston, from Imperial College London in the UK.
People attending the meeting were told that issues regarding the need for improved information for asthma sufferers should be addressed as a matter of urgency.
Donna Covey, from Asthma UK, said that, while research is ongoing, much more needs to be done to realise the charity's vision of "control of asthma today, freedom from asthma tomorrow".
Professor Tak Lee, from King's College London, summarised: "The key questions that have to be addressed to find a cure for asthma have now been identified. It is essential for funders to provider adequate support to researchers so these critical questions can be answered."