Asthma is a very individual disease, and this is often not well understood. The majority of Australians have mild to moderate asthma, and though still a serious illness, if patients follow the right treatment regime, avoid triggers and are mindful of relevant lifestyle factors, they can attain good asthma control and reduce their risk of life-threatening flare-ups or need for urgent treatment.
Although people with mild to moderate asthma can also face significant wellbeing issues, in terms of the personal impact on patients, severe asthma is in a league of its own.
Severe refractory asthma is thought to affect up to 10% of people with asthma; in other words, up to 275 000 Australians. It’s difficult to treat with conventional therapies; some patients only achieve good control if they remain on long term high doses, and others fail to achieve good control despite long term high dose conventional treatment.
It’s unsurprising, therefore, that severe asthma is more likely to result in urgent care and hospital stays, and accounts for around 60% of asthma health care costs.
But more than that, people with severe asthma experience serious life limitations due to frequent, and for many daily, debilitating symptoms. The debilitating nature of severe asthma can have a significant emotional impact – resulting in depression or hopelessness, particularly given that asthma is often considered in the community to be a mild disease easily managed with a blue puffer. Severe asthma may be thought of as just “bad asthma” and not recognised as a distinct disease.
This is an important reason for differentiating severe asthma from its milder forms. Such clear differentiation will assist health professionals to more readily identify people in need of referral to a specialist for diagnosis and increase recognition of the everyday life-limiting reality of patients with the disease — be it reduced ability to work, socialise, parent or succeed in relationships.
Patients often hold great hope for newer medications, such as biological ones, for the treatment of severe asthma. While highly effective for some, as with all treatments, other patients will not respond as well, or side effects may be problematic. Continued research is thus imperative for improving lives and available treatment options.
Outside of the research space much can be done too. Severe asthma is not well recognised, leading to delays in referral and diagnosis and gaps in the support available to those who need it. Patients with asthma may normalise or minimise their symptoms in order to meet the demands of their daily life, and that can lead to delays in seeking medical help and appropriate diagnosis and treatment.
Increased awareness of the prevalence of severe asthma among patients with asthma as well as among medical practitioners will support the early referral of those at risk. But to do this, we also need to understand the disease and patient experience more fully.
Together with my colleagues from the Woolcock Institute of Medical Research, the Hunter Medical Research Institute, the Centre of Excellence in Severe Asthma and the Australasian Severe Asthma Network, we collaborated on research, funded by Asthma Australia, on the experiences of people with severe asthma. The research was published in 2017. The purpose was to uncover the true burden of the disease, in the hope of finding out what are the medical and emotional care and support needs of patients.
We conducted interviews to paint a picture of what life is like with severe asthma. What we found was often sad, sometimes shocking, and it clearly showed the great need to better educate patients, health practitioners and the wider community about severe asthma.
One key theme from our interviews was “misunderstandings” about severe asthma, with many people feeling that friends and family did not understand the severity of their illness or how difficult it was to treat and live with.
Interviewees also felt that the emotional impact of severe asthma was poorly understood by treating health professionals and that additional services were needed, including better mental health support for patients and education and support for family members caring for them.
Several organisations in the asthma world have come together to try and address gaps, such as those highlighted by our interviewees, to improve care for people with severe asthma from diagnosis to education and support.
In March 2018, the Centre of Excellence in Severe Asthma launched their Severe Asthma Toolkit for health professionals. The launch coincided with a consumer advertising campaign by Asthma Australia targeting people who may have undiagnosed severe asthma.
The toolkit is an excellent practical and educational resource for health practitioners treating people diagnosed with severe asthma or those at risk who may need referral for investigation of severe asthma. Importantly, it includes information on mental health topics such as anxiety, depression and panic disorders that can be associated with severe asthma.
Asthma Australia has recently launched a new section on their website to provide key information about severe asthma to people with asthma and their families. Its aim is to speak to those who may have undiagnosed severe asthma and to highlight that life-limiting severe asthma affects many and they are not alone.
It is clear from the experiences shared by our interviewees that the burden of this disease reaches beyond the individual. It also has an impact on families and is often a source of great sadness and guilt. Parents were often unable to lift or play with their children, and many people felt they were not contributing enough or were a drain on those they lived with. Severe asthma was also a cause of strained or broken relationships, exacerbating feelings of isolation.
With all this in mind, it is clear that uptake of the Severe Asthma Toolkit and a commitment by health care providers to do better for people with severe asthma is an essential next step. With greater awareness, education and action, we can improve the lives of people with this debilitating and often invisible illness.
Dr Juliet Foster is a research psychologist whose expertise includes the lived experience of respiratory patients and effective health behaviour change strategies. She is outgoing Thoracic Society (TSANZ) Primary Care Special Interest Group convener. She can be found on Twitter at @Juliet_M_Foster
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