Living with Asthma: Korin’s Story
Seeing the full picture?
The hidden impact of asthma on patients’ everyday life
How well‐controlled is asthma in your patients? Emerging evidence suggests that people may not always report symptoms to their physician, perhaps because they have learned to live with them. What is happening beneath the surface? Here, we examine the everyday experiences of asthma patients and explore how to uncover the disruption it can cause to their activities, social life and emotional wellbeing.
Asthma is widespread. The WHO estimates that there are 235 million asthma sufferers worldwide.1Prevalence of diagnosed asthma varies widely between countries, ranging from 1% of the population in Vietnam to 21% in Australia.2It can be fatal: national mortality rates vary widely, but more than 80% of deaths occur in lower and middle‐income countries.3The socioeconomic impact is substantial: direct healthcare costs (including therapies, consultations and hospitalisations) are high and increase when control of asthma is suboptimal:4
In addition to these economic consequences, asthma patients also pay a personal price: the physical and emotional effects the condition has on their everyday lives.5
Many patients experience symptoms day and night – despite prescribed treatments. More than half of European patients reported at least one disturbed night’s sleep in the last week,7increasing to 88% for those with uncontrolled asthma (GINA guidelines definition).7Lack of/disrupted sleep can affect subsequent daytime performance.
Most patients have become so accustomed to their asthma experience that they regard symptoms as a normal part of their everyday existence. How do they cope? Evidence from patient surveys suggests they change their behaviour and lifestyle to avoid trigger situations.12
In a Swedish survey, asthma patients felt that ‘the worst thing about living with asthma’ was the restrictions it places on their everyday activities:12
- Physical exertion 67%
- Contact with animals/pets 58%
- Visits to cafés/restaurants 36%
Patients sometimes avoided such activities. In addition to the potential long‐term detriment to their physical health, this has an unseen social impact. Asthma patients miss out: they may be unable to go out with their friends and take their children swimming or have to sit and watch while their friends or family enjoy a day out .12 This is the reality of everyday life for many patients, most of whom may be unaware that their control could be improved; they have learned to live with their symptoms.
Asthma symptoms interfered with everyday activities for more than half of patients who considered their asthma to be well controlled.7
As a result, physicians may not be aware of the effect asthma is having on their patients’ daily lives. One reason is that patients may not report these symptoms during asthma consultations; they may not realise that symptoms and exacerbations are a sign of poor control or that more could be done to help them.
Such patients may not know how it feels to have well‐controlled asthma. The problem may be compounded because physicians, severely pressurised for time during appointments, may not be uncovering the day‐to‐day reality of their patients’ experiences.
There seems to be a dissonance between the patient’s and the physician’s perceptions of good asthma control:
Adapted from Ställberg et al. 2003.12
A survey of GPs found a tendency to overestimate the level of their patients’ control, resulting in an underestimate of the disruption caused by asthma symptoms.12Over time, patients may develop low expectations of their asthma treatment, because they can no longer remember or imagine a life without symptoms.
In part, there seems to be a communication issue leading an incomplete dialogue from both sides:
The key to breaking this deadlock is to identify the most troublesome symptoms for each patient and then involve them in developing an appropriate approach to addressing them. To get the full details from the patient, it is crucial to ask the right questions. Open, general enquiries will provide more informative responses:
- How many days in the week do you notice your asthma?
- What has your asthma stopped you from doing?
- How is your asthma during the Winter/Summer/school holidays?
- How many days a week do you use your reliever? How long does it take to work?
- How do you feel about your asthma?
Clinic tests and examinations can only uncover how well the patient’s asthma is controlled at a single time point – a more accurate picture may be obtained by asking about the last week/fortnight/month.
The dialogue can be improved by using language that is suited to the patient’s age, circumstances and level of education. Some patients may be unwilling to admit their lack of understanding, so using familiar terminology can help. For example, patients may not think of their asthma in terms of ‘symptoms’:
Patients may find it difficult to articulate their personal experiences; they may be reluctant to take up their physician’s valuable time. Allowing them a few moments to find the right words can give them the confidence to explain what is going on in their world, to give specific examples and tell their own story. Just a few minutes could help to uncover the true picture, offering an appropriate opportunity to intervene.
There is great potential to make a substantial difference to the lives of many asthma patients. Gaining a valuable insight into their daily experiences gives the physician a chance to act. Taking time to identify the treatment objectives and the personal priority for each patient is time well spent – in terms not only of improved disease management but also of enhanced personal wellbeing. By finding an approach that helps for each individual, physicians could improve asthma control, helping their patients to make fewer adjustments and live more active lives.
- World Health Organisation. Asthma fact sheet no 307, November 2013. Available at: http://www.who.int/mediacentre/factsheets/fs307/en/ (Last accessed: April 2019).
- To T et al. Global asthma prevalence in adults: findings from the cross‐sectional world health survey. BMC Public Health 2012;12:204.
- World Health Organisation. Asthma: what is asthma?, 2016. Available at: http://www.who.int/respiratory/asthma/en/ (Last accessed: April 2019).
- Chapman KR et al. Suboptimal asthma control: prevalence, detection and consequences in general practice. Eur Respir J 2008;31:320–325.
- Gelfand EW. The impact of asthma on the patient, the family, and society. Adv Stud Med 2008;8(3):57–63.
- Accordini S et al. The cost of persistent asthma in Europe: an international population‐based study in adults. Int Arch Allergy Immunol 2013;160:93–101.
- Price D et al. Asthma control and management in 8,000 European patients: the Recognise Asthma and Link to Symptoms and Experience (REALISE) survey. Prim Care Respir Med 2014;14: 14009; doi:10.1038/npjpcrm.2014.9.
- Holgate ST et al. Asthma out of control? A structured review of recent patient surveys. BMC Pulm Med 2006;6(Suppl 1):S2; doi:10.1186/1471‐2466‐6‐S1‐S2.
- Malonne H et al. Impact of montelukast on symptoms in mild‐to‐moderate persistent asthma and exercise‐induced asthma: results of the ASTHMA survey. Curr Med Res Opin 2002;18:512–519.
- Rabe KF et al. Clinical management of asthma in 1999: the Asthma Insights and Reality in Europe (AIRE) study. Eur Respir J 2000; 16:802–807.
- Antonicelli L et al. Asthma severity and medical resource utilisation. Eur Respir J 2004;23:723–729.
- Ställberg B et al. Living with asthma in Sweden – the ALMA study. Respir Med 2003;97:835–843.
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