Getting diagnosed

There is no single test for asthma. Doctors make the diagnosis of asthma when a person has breathing symptoms typical of asthma (wheeze, shortness of breath and/or cough) that come and go, and there is also evidence that sometimes air does not flow out of their lungs normally. People with asthma have a much bigger difference than healthy people between how their lungs work at their best and at their worst. [Reference: National Asthma Council]

By contrast, a diagnosis of severe asthma is made when asthma symptoms and attacks continue despite treatment, or high doses of inhaled corticosteroids and long acting reliever medications are needed for asthma control. [Reference: Severe Asthma Toolkit].

How well the lungs work (lung function) is tested using a spirometer. The patient blows into the spirometer through a tube as forcefully as possible for more than 6 seconds if possible, after taking in as deep a breath as possible. The spirometer measures the amount of air forcefully exhaled.  This is most often given as the amount of air that comes out in one second and the total amount of air that comes out.

Frank explains about spirometry and how the results provide unbiased information.

In our interviews people talked about what lead to their asthma diagnosis, how the diagnosis was made, how they felt once they knew they had asthma, and how the term ‘severe asthma’ sat with them. The diagnosis of asthma came at different stages of their lives, as did the label of severe asthma. Sometimes the person had signs and symptoms when quite young, but the actual diagnosis of asthma did not come until much later.

From a clinical angle, due to improved healthcare provider knowledge about asthma over time, participants response to diagnosis-related issues will likely be very much dependent upon their age. Before the 1980’s there were various terms for symptoms such as bronchitis, wheezy bronchitis, asthmatic bronchitis; and a reluctance to make diagnosis due to lack of effective treatments and higher death rates.

From the 1980s-2000 there was an increased awareness of asthma, and more effective therapies.  Severity of asthma was classified based on treatment requirements. Terms included allergic asthma, episodic asthma, cough-variant asthma. Since 2000 there has been an even greater awareness of asthma and the tendency to label symptoms as asthma or COPD and more recently “overlap syndrome”, which continues to worsen the terminology problem.

For older participants in our study, asthma was often confused with bronchitis by family members but also by doctors, who appeared not to be keen to say the person had asthma. In some cases even the doctors appeared unsure of the diagnosis. This proved frustrating for some people we talked to:

In Jemma’s case the doctors appeared unsure of the diagnosis.

Wayne was frustrated that the healthcare providers did not seem to know or agree on the actual diagnosis.

The process of when and how the person was diagnosed varied. Asthma sometimes followed a chest infection, whilst allergic reactions were the trigger for other people. For some people we talked to, the diagnosis of asthma came unexpectedly after other tests even though they had been given puffers in the past. Rarely, people were given medication without a good explanation of asthma and its causes.

Kim was diagnosed with severe asthma after a sleep study

Leanne realised that being around cats affected her breathing

Allen was told that he has exercise -induced asthma after some tests, but it was not well explained.

Asthma frequently presents in childhood but can occur for the first time at any age.

It was not always the case that people we interviewed were diagnosed with asthma as children, although looking back, some were able to pinpoint a time when symptoms started. For some people in our study a diagnosis of asthma was not unexpected as there was a family history of asthma, and there was an understanding of what the disease was like to live with. Waiting to find out if asthma would emerge was a bit of a lottery for some people. For others, even with a family history, their asthma wasn’t necessarily identified as such, or given the name asthma.

Karen had a family history of asthma on both sides which made the diagnosis quite frightening.

Justin’s father suspected asthma due to other family members having it:

Marion was not diagnosed until the age of 30.

People in this study had different reactions to their asthma diagnosis. Some just accepted it and got on with life, resolving that it would not beat them. Others were angry, or in denial because their perception of a person with asthma was different to how they saw themselves, or they didn’t want to be seen as different or weak.

Denise knew she was different to the other kids.

Ed didn’t fit his perceived picture of an asthmatic.

Nearly everyone we talked to was diagnosed with severe asthma quite a long time after their first asthma diagnosis. The diagnosis did not come as a surprise for those people who understood their symptoms and could see when things were getting more debilitating.

Clive thinks being medicated may have masked the disease progression.

Ed saw the diagnosis of severe asthma as a weakness and leading to negative mindset.

Jemma felt angry at her parents and having to give up her chosen profession