Study on the needs of asthma sufferers

National Asthma Campaign chief executive Anne Smith said:
“This research starts to help us understand what it is really like to live with asthma in the 21st century. We are both shocked and saddened to find that for such a large number of people with asthma, the condition dominates their life to such a degree that it is having a major impact. People with asthma have a right to expect more from life with asthma.”

National Asthma Campaign chief medical adviser Dr Martyn Partridge said:
“We still need more research to understand why this is the case. Early analysis of this study suggests a possible combination of factors. It may be that health care professionals are not providing the advice and treatment needed for individuals to manage their asthma effectively, from initial diagnosis. For others it may be that they are receiving the advice and treatment but not acting upon it, and for a significant minority of people with the most severe asthma, it may be that available medicines are simply not effectively treating their condition.”

The National Asthma Campaign, in light of the study’s initial findings, is calling for immediate action. The existing best practice guidelines on asthma care and advances in treatments should mean the vast majority of people with asthma are able to control their condition with minimal or no restrictions. That is why the charity is calling on people with asthma who are experiencing frequent symptoms to contact their doctor or practice nurse; calling on health care professionals to elicit under-treatment and reassess their patients who are experiencing frequent symptoms; and calling on Government to set out the minimum standard of care that all people with asthma should receive.

The Needs of People with Asthma Study Methodology

This scientific representative study of people with asthma and parents of children with asthma is unique in terms of size and scope, involving over 1,000 hours of interviewing. A two-phase design was chosen to establish contact with the study respondents: a postal sift to locate people with asthma, followed by face to face interviews. The questionnaire used in the interviews was developed from initial desk research of comparative studies, focus groups with people with asthma and consultations with a wide range of experts who formed a scientific advisory group.

The sample comprised of over 800, 75-minute face to face interviews over a six week period. All of the respondents had doctor diagnosed asthma.

1. Questionnaire content
The topics covered in the final face to face interview were:

• Diagnosis of asthma and symptoms experienced
• Impact of condition on the person with asthma, including impact on others
• Management of asthma and views of medical help
• Medicines prescribed and actual use of medications
• Other help and support received and required
• Understanding and beliefs about asthma 
• Awareness and use of the National Asthma Campaign
• Information about household circumstance
• Additional analysis and publication of further results is scheduled for 2000 / 2001.

2. Severity of asthma measure
We devised a composite severity measure to assess and measure the severity of the asthma experienced by respondents. The composite severity measure assesses both the impact of asthma on an individual’s quality of life as well as their level of medication. Initial findings show that 42 per cent (1.4 million) of the population has asthma that has a significant impact. This figure was derived from answers to questions about the following: 

• Restrictions on activity
• Number and range of symptoms
• Frequency of symptoms
• Level of prescribed medication

i. Restrictions on activity
To look at restrictions on activity, for each of 32 activities, respondents were asked to rate the extent to which their asthma limits them doing the activity (totally limited, very limited, fairly limited, not very limited, not at all limited or do not do the activity). Those that said that they were either ‘totally’ or ‘very’ limited were deemed to have a limitation in the relevant activity.

Activities used where a broad range of every day functions including going for a walk, walking up stairs, playing with children, housework and gardening (more examples can be given).

ii / iii. Range and frequency of activities
The range and frequency of the symptoms element of the severity indicator was based on the types of symptoms experienced by respondents, and how often they were experienced during the day and night.

iv. Level of prescribed medicine
Information was collected about prescribed medicines taken in the last year – this was analysed for the medication part of the severity indicator.

Using these four factors, each respondent was allocated to one of the following five groups: 

Severe – 21 per cent - this group includes those who are on high level medication, and / or who are limited in more than eight everyday activities, and / or who experience asthma symptoms every day and every night, and / or who have eight or more symptoms.

Moderately severe – also 21 per cent - those on additional preventer medication, and / or between four to seven activities limited, and / or who experience asthma every day or every night, and / or those who have six to seven symptoms.

Moderate asthma – the biggest group at 42 per cent - on preventer and reliever medication, and / or who have two to three limitations, and / or those who have both day and night symptoms but not daily or nightly, and / or those with four to five symptoms.

Mild asthma – nine per cent - on reliever only medication, and / or with one limitation, and / or with any symptoms during the day or night, and / or those with one to three symptoms.

No asthma currently – the smallest group at seven per cent - those that are not on medication, who have no limitations, nor any symptoms.

The figure of 42 per cent above comes from combining the first two severity groups (severe and moderately severe). Looking at the first group only – one in five (21 per cent) of people with asthma (around 700,000 individuals) have severe asthma. These people are either reliant on a combination of medicines to enable them to lead a normal life, or they make take their medication but still suffer from multiple limitations to their everyday activities or experience a wide range of symptoms every day and night.

3. Field work
This involved 785 interviews with people with asthma and 224 interviews with parents of children with asthma.

The survey population was as follows:

People with asthma by age and gender  

 We are indebted to the National Asthma Campaign for their help in compiling this section