Originally published on 6 September 2017
Asthma is one of the most common chronic conditions, impacting an estimated 334 million people worldwide.1 Although it is often seen as a low-risk condition that can be “fixed” with an inhaler, asthma is serious, especially for those with more severe forms of the disease.
Approximately 10% of all asthma patients worldwide – about 33.4 million individuals – have severe asthma, which can require specialist assessment, personalised support and targeted treatments.1,2,3 And yet, severe asthma is not that well understood outside of the asthma community. It does not generate the headlines that would be expected of a life-threatening disease that affects tens of millions of people every day. Why? Well, part of the reason may lie in how, and how little, severe asthma is talked about.
AstraZeneca has conducted research on social media across several countries and found that there are few severe asthma conversations happening online. We learned that despite a desire for information, severe asthma conversations are under-represented in the overall asthma conversation online. When conversations do take place, they tend to focus on sharing experiences or seeking solutions, rather than sharing information. Furthermore, the information that does exist can be inconsistent and difficult to find.
A closer look at the dialogue taking place on platforms like Facebook and Twitter highlights a disconnect between patients and physicians in terms of the language each uses. Patients describe their condition in many varying ways. While some use emotive language to discuss their experience, few identify themselves as having ‘severe asthma’. They may talk powerfully about frequency and severity of their attacks, but use a range of words like “uncontrolled” or “serious” rather than chronic or severe. On the other hand, physicians tend to use specific, medical language so it is easy to see how anyone searching online for information could have difficulty in finding information that feels relevant to them. This variance in vocabulary may be important for us to keep in mind as we work to disseminate news and information.
In addition to our research, we hear anecdotal evidence from leading members of the asthma community that people with severe asthma are hungry for more information. Some suggestions on topics of interest include:
- Prevalence: Asthma affects 334 million individuals worldwide, and up to 10% of asthma patients have severe asthma.1,2,3 Of those patients with severe asthma, more than 40% remain uncontrolled despite high doses of standard-of-care asthma controller medicines and can require the use of chronic oral corticosteroids (OCS).4,5
- Risk: Severe, uncontrolled asthma is debilitating and potentially fatal with patients experiencing frequent exacerbations and significant limitations on lung function and quality of life. 4,5,6
- OCS dependence: Uncontrolled asthma can lead to a dependence on OCS, with systemic steroid exposure potentially leading to serious short- and long-term adverse effects, including osteoporosis, anxiety, depression, cardiovascular disease and immunosuppression. 7-11
- Physical and socio-economic burden: There is also a significant physical and socio-economic burden of severe asthma with these patients accounting for 50% of asthma-related costs despite compromising only 10% of the asthma population.12
We believe facilitating online conversations that connect members of the severe asthma community more easily could be helpful, especially given research that has led to the increase in understanding of severe asthma and the rise of innovative medicine. There is a real opportunity to improve access to effective information through a standardised terminology and the search terms we use.
AstraZeneca is committed to playing our part in helping improve the digital experience of people with asthma, and ensuring they get access to the information they need. Be sure to follow us on Twitter for updates at @AstraZeneca and @MedImmune to see where this ambition takes us.
1. The Global Asthma Network. The Global Asthma Report 2014. [Online]. Available at: http://www.globalasthmanetwork.org/publications/Global_Asthma_Report_2014.pdf. Last accessed: April 2018
2. Chung KF, Wenzel SE, Brozek JL, et al. International ERS/ATS guidelines on definition, evaluation and treatment of severe asthma. Eur Respir J 2014; 43: 343–73.
3. Wenzel, Severe Asthma in Adults. Am J Respir Crit Care Med. 2005; 172 VOL 172; 149–160, 2005.
4. Price D, Fletcher M, van der Molen T. Asthma control and management in 8,000 European patients: the REcognise Asthma and LInk to Symptoms and Experience (REALISE) survey. NPJ Prim Care Respir Med 2014; 12; 24: 14009
5. Adelphi Real World Respiratory Disease Specific Programme. 2012-2014. [Asthma patient data file], Bollington, UK. Unpublished raw data, cited with permission.
6. Peters SP, Ferguson G, Deniz Y, et al. Uncontrolled asthma: a review of the prevalence, disease burden and options for treatment. Respir Med 2006: 100(7):1139-51.
7. Global Initiative for Asthma. Global Strategy for Asthma Management and Prevention. 2017. Online Appendix. http://ginasthma.org/2017-online-appendix-global-strategy-for-asthma-management-and-prevention/. Last accessed April 2018.
8. Global Initiative for Asthma (GINA). Global Strategy for Asthma Management and Prevention. Updated 2017. Available from: http://ginasthma.org/2017-gina-report-global-strategy-for-asthma-management-and-prevention/. Last accessed April 2018.
9. Hyland ME, Whalley B, Jones RC, Masoli M. A qualitative study of the impact of severe asthma and its treatment showing that treatment burden is neglected in existing asthma assessment scales. Qual Life Res. 2015 Mar;24(3):631-9. doi: 10.1007/s11136-014-0801-x. Epub 2014 Sep 9.
10. Iribarren C, Tolstykh IV, Miller MK, Sobel E, Eisner MD. Adult asthma and risk of coronary heart disease, cerebrovascular disease, and heart failure: a prospective study of 2 matched cohorts. Am J Epidemiol. 2012 Dec 1;176(11):1014-24. doi: 10.1093/aje/kws181. Epub 2012 Nov 8.
11. Zazzali JL, Broder MS, Omachi TA, Chang E, Sun GH, Raimundo K. Risk of corticosteroid-related adverse events in asthma patients with high oral corticosteroid use. Allergy Asthma Proc. 2015 Jul-Aug;36(4):268-74. doi: 10.2500/aap.2015.36.3863.
12. World Allergy Organization (WAO). The management of severe asthma: economic analysis of the cost of treatments for severe asthma. Available from: http://www.worldallergy.org/educational_programs/world_allergy_forum/anaheim2005/blaiss.php. Last accessed April 2018.