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.
Presentation Summary:
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.
Key Points:
- People with severe asthma have a sizeable day-to-day burden
- Very few qualitative studies have been performed with this population, and little is known about the life experiences of people with severe asthma
- Current health messages are directed at people with mild-to-moderate asthma, and not relevant for severe asthma
- The Living with Severe Asthma (LISA) study assessed the impact of severe asthma and treatment to identify unmet personal, healthcare and resource needs
- Most participants experience daily asthma symptoms
- Analysis revealed the following themes: emotional impacts, the burden of treatment and practical issues
- The body as a hindrance: severe asthma placed limits on personal life with physical hindrances, loss of spontaneity, loss of independence
- Severe asthma hindered inter-personal life, including social life, family life and intimate relationships
- Severe asthma limits extra-personal life, including reduced career choices, changes in employment and for some, having to stop work completely
- Many with severe asthma felt they were alone with their disease
- Participants felt poorly understood and often thought that other people felt their asthma should be ‘fixable’, while others concealed their asthma due to a perceived stigma
- Emotional distress was common and sometimes severe, including feeling of frustration, self-directed anger, hopelessness, worthlessness and low mood or depression
- For some participants, the emotional and physical burden was so severe that they felt little pleasure was left in life
- The burden of treatment is substantial, particularly for oral corticosteroids (OCS)
- Long-term OCS contributed to significant negative side effects and having negative impacts on personal body image
- Participants felt hope for new targeted therapies (e.g. monoclonal antibody treatment)
- Reliance on treatment and the constant need to take medications led to feelings that medications took over their lives
- For some participants, the cost of medication was a significant issue
- A range of coping strategies (both positive and negative) were apparent
- Positive coping strategies included accepting severe asthma, acquiring self-management skills and learning to manage emotional problems
- Negative coping strategies included denying a severe asthma diagnosis, restriction of exertion and over-vigilant monitoring of symptoms
- Some described general practitioners (GPs) as being accessible, skilled and providing opportunity for discussion. For others, GPs were poorly accessible, had gaps in severe asthma knowledge or had limited communication
- Most described specialists as professional, knowledgeable and reported good rapport and communication. Some felt uncertain about asking questions in specialist appointments
- Participants reported very frightening asthma attacks / flare-ups and some took extreme risks to avoid emergency department visits to limit life disruption
- High quality paramedic and in-patient care were common, although some noted a lack of consistency between hospitals
- Asthma attacks cause fear or even trauma for family members, including children
- Day-to-day practical needs depended on symptom severity and limitations
- Those living alone struggled the most to cope with the unpredictability of asthma symptoms
- The day-to-day burden of asthma also impacts family members and partners
- Patients suggested resources that should be developed, including counselling for life goals, support for children and family members and improving knowledge on severe asthma in general practice
- Resources are also required to provide guidance on what to do during an asthma attack and following hospital discharge
- There is an urgent need to improve the quality of primary and specialist care for severe asthma
- Consumer messages are required that raise awareness of different types of asthma
About Prof. Helen Reddel:
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).
About A/Prof. Lorraine Smith:
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.
