As part of our ongoing seminar series, the Centre of Excellence in Severe Asthma hosted Prof. Helen Reddel for a webinar on “Living with Severe Asthma”, with discussion facilitated by A/Prof. Lorraine Smith on 19 October 2016.
People with severe asthma have significant disease burden. Severe asthma is a chronic life-long disease with daily symptoms. Little is known about the life experience of people with severe asthma. Most public health messages are targeted at mild-to-moderate disease, and not relevant for severe asthma.
Prof. Helen Reddel provides a summary of the Living with Severe Asthma (LISA) study. Qualitative semi-structured interviews were conducted with participants with severe asthma. Interviews provide insight into the emotional and practical impacts of living with severe asthma, as well as the burden of treatment.
Severe asthma places limits on personal life, impacting social, family and intimate relationships. Many people with severe asthma felt alone with their disease. Emotional distress was common and, in some cases, very severe.
Treatment also contributed to daily burden. In particular, oral corticosteroid (OCS) treatment caused significant negative side effects. The constant need for medication was viewed as a burden, and for some the cost of treatment was an issue.
A number of gaps in clinical care were highlighted. In some cases, participants felt general practitioners (GPs) were poorly accessible and had gaps in severe asthma knowledge. Some felt uncertain about asking questions in specialist appointments. There was also inconsistency between emergency departments during asthma attacks.
The findings highlight the need for better resources for severe asthma, particularly in primary care and for asthma attacks. There is also a need for specific consumer messages that are more relevant for severe asthma.
Prof. Reddel’s research focuses on strategies to improve the management of airways disease, and population level monitoring of asthma and COPD outcomes. She has a strong focus on improving communication between patients and health professionals, and on making guidelines not only evidence-based, but also practical and patient-centred.
She is Chair of the Science Committee of the Global Initiative for Asthma (GINA), a member of the Guidelines Committee for the Australian Asthma Handbook, and clinical adviser to the Australian Centre for Airways disease Monitoring (ACAM).
A/Prof Lorraine Smith’s research focuses on patient self-management of chronic conditions, with a particular interest in exploring patient experiences of respiratory conditions.
She currently leads three respiratory studies: (1) an in-depth study of people’s experiences of living with and managing severe asthma; (2) the design, testing and evaluation of a self-management app to assist young people with asthma; and (3) a study into patients’ experiences of group programs for the management of chronic obstructive respiratory disease.