Asthma in adolescence

INTRODUCTION 

Adolescence is a time of intense physical, emotional, psychological and social change (Table 1).1 It should be a time of excitement when teenagers strive to reduce their dependency on their parents and gain the freedom to make their own decisions. Asthma, and the way in which it is treated, can impede these changes and increase the stress that is a part of normal adolescence.1., 2.

Table 1. The challenges of adolescence and asthma.

		Issues
	Physical/health	Puberty
		Concerns about general health and growth
		Concerns about asthma
		Concerns about medication
	Emotional	Wish for autonomy
		Peer pressure and approval
		Dislike of being different
		Sexual impulses
		Risk-taking behaviour
		Denial of illness or need for treatment
		Rejection of advice
	Social	Leaving home
		Smoking (active and passive)
		Organisation of care
		Paying for prescriptions

Between 4 and 4.5 million teenagers live in the UK; based on recent prevalence figures,3., 4. it is estimated that 800000 of these have asthma.5 Although it is widely recognised that asthma is often difficult to manage in adolescence, there is relatively little guidance for clinicians on the best way of working with this age group. The 45 pages of the two previous versions of the British asthma management guidelines, for example, contain one sentence about the special needs of adolescents.6., 7. Recommendations on treatment place adolescents together with older children and adults but although this may be reasonable for decisions about medication, it is not appropriate for the wider issues of communication and organisation of care. In contrast, all guidelines have separate detailed sections on the special needs of pre-school children with a wheeze, even though these constitute a smaller proportion of the population with asthma.

Improving the care of teenagers with asthma is impeded by several myths and misconceptions. It is widely believed that asthma is less common in teenagers than children, that it is less severe and causes less morbidity than in children, that most children grow out of their asthma during puberty, and that poor asthma control in teenagers usually occurs because they do not take their treatment. All of these statements are untrue or simplistic.

THE PREVALENCE OF ASTHMA IN ADOLESCENCE 

We know that the prevalence of asthma and wheeze in children has increased steadily over the past 30 years8., 9., 10. but it is less well recognised that the prevalence of asthma has also risen among adolescents in that time.11., 12. The prevalence of wheezing among British teenagers, for example, increased by 70% between 1974 and 1986.11 In 12-year-old boys, the prevalence of wheeze in the previous year rose from 9.8% in 1973 to 15.2% in 1988.12

In the 1990s, the world-wide prevalence of wheeze, asthma and other atopic conditions was assessed in over 460000 13–14-year-olds in 56 different countries in the International Study of Asthma and Allergy in Childhood (ISAAC) project,3 showing a 20–60-fold difference in the prevalence of these illnesses in different countries. The UK, New Zealand and Australia had the highest rates of asthma and wheeze, whereas Eastern European countries, India and China had some of the lowest. The British ISAAC study used a self-completed questionnaire to measure the prevalence of wheeze and asthma in a representative sample of 27500 12–14-year-olds.13 One third of the children reported wheeze in the previous 12 months, 19.8% had used asthma therapy in that time, and 20.9% had been diagnosed as having asthma. These figures are similar to or higher than the prevalence rates in younger children. Underdiagnosis and undertreatment were common.

In a study of 28000 Nottingham 11–16-year-olds, 19% reported wheeze in the previous year, although only two-thirds had been diagnosed as having asthma.4 That study showed that the male predominance of wheeze in the first decade of life is reversed around the time of puberty because of a rise in the incidence of wheezing in girls and a fall in boys. Whether this gender shift reflects hormonal changes or differences in the airway growth and function of boys and girls is unclear.14., 15.

UNDERDIAGNOSIS, UNDERTREATMENT AND MORBIDITY 

Diagnosing asthma is more straightforward in teenagers than in younger children and infants as a narrower range of conditions needs to be considered in the differential diagnosis of the adolescent who presents with recurrent cough, breathlessness or wheeze. Hyperventilation, vocal cord dysfunction, habit or psychogenic cough, bronchiectasis and a variety of rarer conditions can all masquerade as asthma, but a careful history and examination will usually identify the characteristic features of these conditions.16 Unlike the situation with the pre-school child who has suspected asthma, it is possible to measure lung function at baseline and in response to bronchodilators or exercise for objective evidence of reversible airway narrowing.

Given the relative ease of diagnosing asthma in this age group, it is discouraging to note that underdiagnosis and, as a result, undertreatment are common. In the UK ISAAC study, 34% of the pupils who reported having frequent nocturnal wheeze over the previous 12 months had not been diagnosed as having asthma.13 Over a third of pupils with frequent symptoms or repeated attacks of wheeze had not used an inhaler in the year before. Morbidity was also high in those who had been diagnosed as having asthma by a doctor at some point, particularly in those who reported wheeze in the previous 12 months. Of these, 70% had had four or more attacks, 66% had sleep disturbance at least once a week, 62% had suffered a speech-limiting episode, and 76% reported disruption of their daily activities in the previous year. Exercise-induced symptoms were common. The authors concluded that a substantial proportion of adolescents with asthma that interfered with their daily lives were not being treated.13

Siersted et al. found that a third of Danish 12–15-year-olds with asthma had undiagnosed asthma.17 Underdiagnosis was associated with low physical activity, high body mass, family problems and passive smoking. Girls were twice as likely to have undiagnosed asthma as boys (69% vs. 33%) and cough rather than wheeze or breathlessness was the major symptom. Less than a third of those with undiagnosed asthma had reported their symptoms to a doctor. The authors proposed a targeted community campaign to identify undiagnosed asthma in adolescents.

The National Asthma Campaign’s “Impact of Asthma” survey analysed 52000 self-completed questionnaires from patients with asthma, including 5200 from 12- to 17-year-olds and 6000 younger children.18 Although both daytime and night-time symptoms were more frequent in the adolescents than in the children, more children than adolescents had contacted either their GP or the hospital in the previous year (Table 2). This tells us that the level of morbidity from asthma is as high (and often higher) in teenagers as in younger children but teenagers are less likely to seek medical help, either in an emergency or routinely. More recent data support this, with the rate of hospitalisation falling from 27 per 10000 boys aged 5–9 years to 15 per 10000 aged 10–14 years and 7.2 per 10000 for young men aged 15–19 years.19

Table 2. National Asthma Campaign impact of asthma survey.

		Children <12 years (n = 6400); %	Adolescents 12–17 years (n = 5200); %
	Frequent symptoms
	More than once a week	46	69
	Most/every day	18	29
	Woken more than once a week	34	36
	Moderate/severe effect on quality of life	61	61
	Visit to GP in last year	78	73
	Home visit by GP	26	14
	Out-patient clinic	20	13
	Emergency hospital visit	17	13

With such a high level of morbidity, it is not surprising that deaths resulting from asthma are more common in teenagers than in younger children. Asthma mortality is six times higher in 15–19-year-olds than in 5–9-year-olds, with 87 deaths in this older age group in the UK over a 3-year period.1 Many deaths are preventable. A denial of symptoms or of the need for treatment, and poor perception, are common factors. Many teenagers underestimate the severity of their asthma and overestimate their response to bronchodilators.20

COMPLIANCE AND CONCORDANCE 

Although underdiagnosis is an important cause of morbidity in teenagers, it is clear that there is an unacceptably high rate of symptoms even when asthma has been diagnosed and treatment prescribed. In a minority of patients, poor control reflects particularly severe or refractory asthma. In others, the problem is that they have been given inadequate or inappropriate treatment. In many teenagers, however, poor compliance is an important factor.

Compliance, when used in a medical context, means taking treatment as it has been prescribed.21., 22. It has been suggested that the terms “compliance” and “adherence” imply an overly prescriptive or paternalistic model of care and that it is preferable to use the term “concordance”.23 Concordance is meant to reflect a partnership between the patient and clinician that results in an agreement about the treatment that is appropriate for that patient, rather than being one-sided obedience. The term “non-concordance” indicates a failure to come to an agreement and is meant to be less accusatory than “non-compliance”, which implies a failure of patients to do as they have been told.

Non-compliance or non-concordance is not unique to teenagers or to asthma. Poor compliance with maintenance therapy is, for example, a common cause of relapse from leukaemia and of the rejection of transplanted organs. From studies of a wide variety of treatments, it is estimated that about a third of patients comply adequately, a third comply more or less adequately, and a third do not comply.24., 25., 26.

Understanding poor compliance 

Many factors influence compliance or concordance (Fig. 1). In general, poor compliance is not closely associated with patients’ age, sex or race, with their educational ability or with the disease being treated. Anxiety or depression can both reduce compliance. A lack of knowledge or understanding of the treatment is an important cause of non-compliance, but this is often not the reason for not taking therapy.24., 27. Compliance is dynamic rather than fixed: some patients will change from taking their treatment as prescribed to having periods when they stop taking it, often for reasons that are not evident. Non-compliance may be unintentional or intentional.21., 24. Unintentional non-compliance may reflect forgetfulness, social chaos or a lack of understanding or teaching about how the treatment should be used. Intentional non-compliance may result from a denial of the need for, or the benefits of, treatment, a fear of side-effects or the rejection of advice from a person in authority.

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Figure 1. Factors affecting compliance.

There are many reasons why adolescents are reluctant to take their asthma medication, particularly preventive therapy.1., 21., 24. They may be self-conscious about using inhalers because they do not want to appear different from their peers. Many adolescents are angry, resentful or feel as though they have somehow failed when they are diagnosed as having asthma. Denying the severity of their symptoms and the need for regular treatment is common, as is reluctance to seek medical help. Many worry about the side-effects of medication, especially inhaled corticosteroids; indeed, they may blame their inhaled steroids for the delayed onset of puberty that is seen in many asthmatic children.1 Some adolescents are concerned about becoming dependent on their medication; others dislike it because drugs are “unnatural”. They may believe that prophylaxis is ineffective because of the lack of any immediate benefit. Complicated drug regimens with frequent doses of multiple agents are more likely to be rejected than simple ones.

The clinicians’ communication skills, a patient-centred approach to education and regular feedback and reinforcement have all been shown to improve compliance and reduce morbidity.21., 22., 23., 24., 34., 35. Good communication is the key component of improving compliance. If we hope to communicate effectively with adolescents with asthma, we need to listen to, recognise and respond to the issues that are important to them. We need to understand the attitudes of adolescents with asthma, and their peers, to the disease and its treatment.

ATTITUDES OF SECONDARY SCHOOLCHILDREN TO ASTHMA 

Our understanding of these issues was increased by a large national survey that was performed by the National Asthma Campaign in 1997.36., 37. The aim was to examine the views towards asthma of a representative sample of British secondary schoolchildren. Identifying the key issues led to the development of a range of National Asthma Campaign information sheets and other resources for teenagers with asthma, their parents, teachers and health professionals.

Results 

There were 4188 completed responses from 11- to 16-year-olds, with an equal number of boys and girls; 89% of the respondents were white. Of the respondents, 789 (19%) said that they had asthma, a figure similar to the 21% of 12–14-year-olds in the UK ISAAC study who had been diagnosed as having asthma.13 Seventy-five per cent answered that they did not have asthma, and 6% did not know.

Three-quarters of all the respondents agreed that “asthma is a serious problem”: 89% said that they thought everybody should be taught about asthma so that they would know what to do if they saw somebody having an attack. Only 41% of the respondents said, however, that they would know how to help a friend in an attack. A higher proportion of asthmatics (72%) said that they would know what to do.

The responses of the 789 asthmatic subjects to the question “Which of these things have you ever worried about?” are given in Table 3. The most common concerns were having asthma for ever (50% of respondents) and being with people who did not know what to do in an attack (43%). Some responses, such as having to take treatment for ever, or being unable to do sports, were as predicted. Concerns about asthma affecting their job prospects or chance of getting a boyfriend or girlfriend, and about putting on weight with medication, were present in 12–38% of the respondents – these are issues that are often not raised in clinical consultations. Only 10% of the asthmatics had no concerns about any of the issues listed.

Table 3. National Asthma Campaign/MORI survey of attitudes of secondary schoolchildren to asthma.36., 37.

	“Which of these things to do with asthma have you ever worried about?”	% Positive responses
	The possibility of having asthma for ever	50
	Being with people who don’t know what to do in an attack	43
	Having to take treatment for ever	38
	Not being able to get the kind job that I want because of my asthma	38
	Being unable to do sports/games because of my asthma	35
	Having to use inhalers	25
	Putting on weight because of medication	25
	Not understanding why I get asthma	23
	Taking my inhalers in front of people	22
	Not being able to have my inhaler because the teacher has it	18
	Not getting boyfriend/girlfriend	12

Base: 789 respondents who answered that they had asthma.

The questionnaire also explored communication with health professionals. Fewer than half of the respondents with asthma believed that their doctor or nurse told them what they needed to know about their asthma. A fifth said that they did not understand what their doctor or nurse told them, and a similar proportion answered that they did not feel confident about asking for information about their asthma. A third of the subjects said that they felt as if health professionals talked to them as though they were younger than they were, this being particularly true of the younger girls.

Fifty-one per cent of all the respondents answered that they had never smoked, 20% said that they had only smoked once or twice, and 12% of the asthmatics and 9% of the non-asthmatics had smoked but given up. In both groups, 4% smoked between 7 and 21 cigarettes a week, and 6% smoked more than 21 cigarettes a week. In line with other surveys,38., 39. more girls than boys (21% vs. 15%) were current smokers. The numbers of respondents who smoked at least one cigarette a day rose from 1% at 11 years of age to 24% at 16. There was no difference between the asthmatic and non-asthmatic subjects for any of these figures. Others have shown that adolescents with asthma are at least as likely as non-asthmatics to smoke, perhaps as a part of the risk-taking behaviour that is a feature of chronic illness in adolescence.1., 40., 41.

An Australian study of over 4000 13–14-year-old high-school students and 1000 teachers showed some similarities to the National Asthma Campaign/MORI survey.40 In that study, the prevalence of current asthma was 23%. Twenty-two per cent of asthmatics reported they were current smokers. Of the respondents, 36% of the students with asthma were embarrassed about using their inhalers in class, 20% believed that their teachers had a negative attitude towards students with asthma, and 54% thought that teachers were worried about taking someone with asthma on a school trip. There was a widespread belief among teachers and students that students played on or exploited their asthma. An assessment of asthma knowledge showed a very poor level of recognition of acute asthma and of treatment in general among all the groups.

The key messages from these studies are that young people see asthma as a serious problem and that adolescents with asthma are frightened by their disease to a degree that is not always evident to clinicians. They worry about the effects of asthma on their activities and on how their peers see them. They want more information about their asthma and treatment, and they want a more responsive approach from those involved in their care.

A PRACTICAL APPROACH TO IMPROVING COMPLIANCE 

These surveys are helpful in identifying the issues that are of importance to adolescents with asthma. We need to move way from the traditional model of care in which the doctor decides what the important issues are and tells the patient what to do. Such an approach is unlikely to be successful, particularly with a teenager who is trying to establish autonomy. We need a much more patient-centred approach, in which the clinician listens to, identifies and addresses the patient’s concerns rather than unilaterally deciding what is important. Using open-ended questions such as “What is it about your asthma that bothers or worries you most?” and “What do you think about your inhalers?” make it clear that health professionals are interested in what is important to the adolescents rather than following their own agenda.21., 22., 23., 24., 34., 35.

Once patients’ concerns or goals have been elicited, it is possible to suggest what treatment will best help them to achieve these goals, and to agree a treatment plan that is tailored to their needs. The clinician should be prepared to negotiate. Giving inhaled steroids once rather than twice a day may, for example, be more realistic and acceptable for a teenager with a busy lifestyle and mild-to-moderate asthma. The clinician may prefer to use a large-volume spacer but the patient may want a dry powder inhaler because it is easier to use without peers being aware of it. Be realistic about compliance too. Asking how often adolescents are managing to take their inhalers rather than whether are they taking their brown inhaler twice a day is more likely to gain an honest answer and indicates that the clinician recognises the difficulty of taking treatment regularly.

It is important to keep the discussion simple and to focus on practical skills such as how to recognise that the asthma is worsening and what they should do. Information overload should be avoided. Age-appropriate information leaflets, such as those produced by the National Asthma Campaign for adolescents, can reinforce what has been discussed. Education is a process rather than an event, so a review should be arranged to assess progress towards the agreed goals, to reinforce and repeat the key points, to reassure and to praise success.22 Simple written, individualised self-management or action asthma plans can reduce exacerbations and the frequency of symptoms and improve the quality of life in patients of all ages with asthma,22 yet many patients are never given one. Discussions need to include the avoidance of triggers that are relevant for that individual as well as smoking. Continuity of care and a consistent approach reduce confusion about the advice given.

ORGANISING AND TRANSFERRING CARE 

Although it is accepted that the emotional and psychosocial needs of adolescents with asthma differ from those of younger children or of adults, it is not clear what the best model of care should be.1., 41., 42., 43. It is often inappropriate for teenagers to be seen in a paediatric clinic or admitted to a children’s ward but it may also be premature for them to be seen in an adult setting. In North America, Australia and some parts of Europe, specialist clinicians provide adolescent care in dedicated adolescent units. In the UK, adolescents are poorly served at all levels of the health service:41., 42. there are very few adolescent facilities or specialists, although there is a well-argued case for having them.41., 42., 43. In 1998, for example, only 8% of health authorities had adolescent facilities in the UK.42 Young people themselves would welcome dedicated facilities.

How young people move from the care of paediatricians to the care of an adult chest physician varies widely from centre to centre, illustrating the lack of consensus about how this important transition should be accomplished. Transfer is often haphazard, and there is a serious risk of the young person being lost to follow-up, particularly if he or she moves to a job or higher education.41 Many young people do not register with a new family doctor when they move. Preparation, co-ordination and information are all needed if an efficient and caring transfer is to be achieved, and clinical nurse specialists often have a key role to play here. It needs to be recognised that, for adolescents with a chronic illness, severing ties with “their” team of paediatric staff and the transfer to another, very different, service is a major, often frightening, life event. If handled insensitively, they may feel rejected and abandoned. Joint clinics between adult specialists and paediatricians, and a period of overlap between the two services, have been advocated but may not always be achievable.

Views on whether transfer should occur at a set age, such as 16 or 18, or at a particular time in social transition, such as when they leave school, vary greatly. There should ideally be some flexibility about the age of hand-over that takes into account the wishes of the child and the parents, the child’s maturity and the presence of any complicating co-existent illnesses. However, the transition is achieved, it is essential that the primary care team is fully involved.

PRACTICE POINTS