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Health experiences of adolescents with uncontrolled severe asthma
  1. Kate Edgecombe1,
  2. Sue Latter2,
  3. Sheila Peters3,
  4. Graham Roberts1,4,5,6
  1. 1School of Medicine, University of Southampton, Southampton, UK
  2. 2School of Health Sciences, University of Southampton, Southampton, UK
  3. 3St Mary's Hospital, Portsmouth, UK
  4. 4Southampton University Hospitals Trust, Southampton, UK
  5. 5David Hide Asthma and Allergy Research Centre, St Mary's Hospital, Newport, Isle of Wight, UK
  6. 6Southampton NIHR Respiratory Biomedical Research Unit, Southampton, UK
  1. Correspondence to Dr Graham Roberts, Paediatric Allergy and Respiratory Medicine, Level F South Academic Block (Mail point 803), Developmental Origins of Health and Disease, University of Southampton School of Medicine, Southampton General Hospital, Tremona Road, Southampton SO16 6YD, UK; g.c.roberts{at}soton.ac.uk

Abstract

Background and aims Many adolescents with asthma experience continued symptoms and impaired quality of life despite modern therapy. This study sought to understand their experience and to use this understanding to improve their clinical management.

Design and subjects Qualitative study based on in-depth semi-structured interviews conducted with adolescents with uncontrolled severe asthma.

Results 22 adolescents (11–18 years) with uncontrolled severe asthma were interviewed. Two of the overarching themes that emerged were: (A) medication and adherence; and (B) interaction with healthcare professionals and adherence with their advice. Despite frequent visits to clinic, some did not understand why they were using medications. Many felt that only some medications worked and were concerned about adverse effects. Factors related to intentional non-adherence were not being ‘bothered’ and conflicts with other activities. In particular, most were not using their spacer. Some though perceived a positive benefit to using their preventer treatment. Half the participants lived with a pet that they were sensitised to and two-thirds lived with a smoker. Adolescents felt involved in the clinic consultation and felt it was helpful but many did not take responsibility for interacting with health professionals. Parents were relied on to report symptoms, translate medical terms and remember the management plan.

Conclusions Adherence was often poor particularly with the use of spacers. Adolescents had a poor understanding of their medication and using it often conflicted with other activities. Adolescents are very reliant on their parents. Healthcare professionals need to work to empower them to gradually take on the responsibility for their asthma.

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Introduction

Asthma is the commonest chronic disease of adolescence, affecting 800 000 adolescents in the UK.1 It therefore accounts for a significant percentage of the healthcare budget.2 3 Despite a prescription of inhaled corticosteroids and bronchodilators, many adolescents with asthma still experience ongoing symptoms and an impaired quality of life.4 5 This group has been labelled as having ‘difficult’ asthma.6 The gap between the availability of apparently effective therapy and ongoing asthma symptoms is likely to be related to both asthma severity and developmental characteristics of adolescents such as risk taking behaviour and desire for autonomy. Non-adherence with therapy is an example of risk taking behaviour.7 These adolescents face additional difficulties in achieving the normal psychological and social developmental tasks of adolescence such as gaining personal identity, independence and autonomy.8 This presents management and communication challenges for their healthcare professionals.

What is already known on this topic

  • Despite the prescription of inhaled corticosteroids and bronchodilators, many adolescents with asthma still experience ongoing symptoms and an impaired quality of life.

  • Young people with severe asthma consume a large proportion of asthma related healthcare resources.

What this study adds

  • Most adolescents did not take their inhaled medication using their spacer device, an example of intentional non-adherence.

  • Most adolescents did not take responsibility for their asthma nor for interacting with health professionals relying on their parents instead.

The health experiences of adolescents with mild asthma in the community have been investigated9 but little is known about the experience of adolescents with more severe asthma. This severe group is important as they consume a large proportion of asthma related healthcare resources.2 3 This study aims to understand the experiences of adolescents living with difficult asthma, particularly with respect to their interaction with healthcare professionals and use of medications. These insights will enable us to propose ways of improving the clinical management of this group of patients and their healthcare experiences.

Methods

Design

A qualitative study of adolescents with severe uncontrolled asthma, investigating their health experiences using in-depth, focused, semi-structured interviews. The study was approved by the Southampton and South West Hampshire Local Research Ethics Committee (LREC05/Q1702/100).

Participants and setting

Adolescents aged 11–18 years were recruited from the paediatric respiratory clinics at Southampton University Hospital NHS Trust, St Mary's Hospital, Isle of Wight and St Mary's Hospital, Portsmouth between June 2006 and August 2007. Participants all had uncontrolled severe asthma defined as symptoms more than twice a week despite the use of at least 800 μg/day inhaled beclometasone equivalent.6 Adolescents with other non-atopic chronic medical conditions that could affect their quality of life were excluded. Initially all patients who met the inclusion criteria were invited to participate in the study. In the second half of the study gender and age were also used as purposive sampling criteria to ensure that there was representation from both male and females, and both younger and older adolescents. Sampling ceased when data saturation had been achieved. Participants were interviewed in the paediatric outpatients department. Informed consent was obtained from both adolescents and their parents.

Methods and analysis

In-depth, focused, semi-structured interviews with the adolescents were conducted using open questions guided by topics (see online supplement at http://adc.bmj.com/). Questions were flexible and responsive to each teenager's narrative. Interviews were conducted in a private room alone with one investigator (KE, fourth year medical student) who did not have any participation in the care of the participant. Adolescents were assured that the interview would be kept strictly confidential with the exception that they disclosed anything that put them or someone else at serious risk of significant harm. Interviews lasted 20–60 min and were recorded by dictaphone. Recordings were transcribed verbatim into an anonymised transcript. Transcripts were systematically analysed using a thematic approach in an iterative process of continual comparison.10 From the transcripts, the emergent themes relating to the research questions were identified and coded. A number of the transcripts were coded by a second investigator (GR) to enhance the reliability and rigor of the analysis process. These were regularly discussed by all the investigators with emerging themes being explored in later interviews within an iterative process. Particular focus was placed on deviant cases that appeared to challenge the emerging pattern.11 Re-synthesis of these themes and subthemes allowed the development of explanatory models based on the over-arching themes.11

For the purposes of describing the proportion of participants expressing a particular view, the following terms are used: ‘great majority/most’ means more than three-quarters of participants; ‘majority/many’ means half to three-quarters; ‘some/a minority’ equates to a quarter to fewer than half; and ‘a small minority/a few’ means under a quarter of participants.8

To quantify the participants' experience of asthma, they completed a short retrospective symptom questionnaire,12 the well-validated Paediatric Asthma Quality of Life Questionnaire13 and a generic quality of life assessment tool consisting of a 10 cm line marked with 0–100.14 Their parents and paediatrician also completed the same generic quality of life assessments on the same day. Participants', parents' and paediatricians' assessments were compared using a Pearson's correlation coefficient. Adolescents, their parents and paediatricians were also asked how often they forgot their preventer medications with answers being compared using the κ statistic. Adolescents additionally underwent spirometry (Jaeger, Wuerzburg, Germany) to assess their lung function.

Results

Characteristics of participants

A total of 22 adolescents aged 11–18 years (median 14; six females) participated in the study. Five others were approached but did not participate (two were unable to arrange appointments at convenient times, one declined, another did not attend and the last had an additional chronic respiratory diagnosis). The included participants had previously been admitted to hospital on a median of 12.5 (IQR 6–30) times with a median of 1 (0–2) admission in the previous year. A third had been previously admitted to intensive care. A quarter were on maintenance oral corticosteroid, half lived with a pet to which they were sensitised and nearly two-thirds lived with a smoker. Their clinic mean per cent predicted forced expiratory volume in 1 s was 92% (range 69–120%).

The symptom questionnaire revealed that most participants complained of experiencing wheeze, cough and shortness of breath in the last week. They were often symptomatic with walking and woke with symptoms a median of three nights per week. The adolescents recorded a median score of 2.7 (IQR 1.4–3.3) on the Paediatric Asthma Quality of Life Questionnaire that indicated they have an impaired quality of life. Despite this, participants thought their asthma had been averagely severe in the previous week and well controlled. Their parents felt they were averagely severe and averagely controlled during this same time period. Meanwhile their paediatricians thought they were doing less well (moderately severe and poorly controlled). A κ analysis suggested that there was only slight to fair agreement between the adolescents' and their parents' or paediatricians' assessments of their asthma severity (κ statistic 0.32 and 0.19 respectively) and control (0.23 and 0.05). When asked to mark a 10 cm line to indicate how good or bad is their health was on that day (100 being best imaginable health state and 0 being worst), adolescents, parents and paediatricians marked the line at 72.5, 60.0 and 60.0 respectively (Pearson's correlation coefficient of 0.50 with p=0.02 for adolescents vs parents and 0.629 with p<0.01 for adolescents vs paediatricians).

Overarching themes

Synthesis of emergent themes from transcripts generated four overarching themes: medication and adherence; interaction with healthcare professionals and adherence with their advice; school and close supportive relationships. This paper will focus only on the first two themes. These themes have been further subdivided into areas related to the biopsychosocial tasks of adolescence: responsibility, experience and experimentation; identity and interaction with others; activities and hobbies15 (figure 1).

Figure 1

Overview of the adolescents' (A) use of asthma medication and adherence and (B) interaction with asthma healthcare professionals in relation to the biopsychosocial tasks of adolescence: responsibility, experience and experimentation, identity and interaction with others, activities and hobbies.14

Medications and adherence with medications

Responsibility

Most adolescents took their medication themselves, without supervision, although most were reminded by their parents. Occasionally friends helped with medications. A few adolescents admitted to lying to parents about having taken medications. Despite being frequently seen by the clinic multidisciplinary team, there was still widespread confusion about their medications. This can be viewed as contributing to unintentional non-adherence. A few of the adolescents explained this by saying that their medication regimen frequently changed (see box 1).

Box 1 Medication and adherence

Responsibility

  • Taking medication themselves: “yeah most of the time coz I can know when to do my blues, coz I've just had it for such a long time I just know, ‘ok I'm getting wheezy, I don't want another asthma attack, I'm gonna go and do some blues’” (T7, 11♂).

  • Reminders from parents: “I take them by myself but my mum has to remind me otherwise I don't do it” (T6, 12♂).

  • Friends helping with medications: “Yeah, well they definitely would help—they would come over. They always like give me my inhalers and stuff like if I need it, so…” (T13, 17♂).

  • Lying to parents: “sometimes, most of the time my mum says, ‘have you took it’ and I just can't be bothered to go and take it but I say I have so she don't get worried, well I can't really be bothered if I'm walking to the kitchen, so I just tell her I have” (T16, 15♂).

  • Confusion about medications: “I usually take my blue inhaler then if it's really bad I take the preventer because it's a—I think it's a steroid based that's quick acting” (T9. 15♂). Perhaps because: “They change nearly every time I come in (to clinic)” (T15, 14♂).

Experience and experimentation

  • Most thought that their medicines worked: “Yeah about 80% of the time they do work” (T6, 12♂). But not all: “The blue one yes, the nebuliser yes, the turbo inhaler yes but I'm not too sure about the tablets and the purple inhaler” (T17, 14♂). But not always: “They have their off days, sometimes—when I need them—they don't tend to work” (T9, 15♂).

  • Downsides with medication: “when I'm bad I'll take a load of steroids and I'll be fine in the coming days … but it's the price you pay for working really” (T14, 14♂).

  • Reasons for complying with medication: previous experience of an exacerbation “I just make sure I do it otherwise I'm gonna be ill, that's one of the reasons I came into hospital was because I carried on forgetting to take my inhalers” (T10, 14♂). To improve sleep “The evening dose cos I'm try to improve my sleeping so I know to like take my inhalers before I go to sleep and I might sleep all the way through” (T17, 14♂).

  • Using less medication than prescribed: “Probably well if I'm meant to take six I probably take half of that” (T20, 14♂). Or more: “on an extremely bad day I tend to dose up on that, I up my dose because it can help later in the day, even though it's a preventer, the time it takes to act, it helps me so if I know I'm bad that day, if I've been bad that night, I'll take, usually I take two puffs, I take four, because it just helps me to react to it” (T9, 15♂).

  • Non-intentional non-adherence with medication: forget: “Sometimes, sometimes I just don't, sometimes I forget for a whole week to take my stuff, when I'm in a rush and stuff” (T10, 14♂).

  • Reasons for intentional non-adherence with medication: perceived lack of effect: “I don't usually forget to take my inhalers cos I know that they help, I can't really feel the tablets helping so I usually forget to take them” (T17, 14♂). Cannot be bothered: “Boring, cos I just have to sit there for like 15 to 20 minutes while I have the medication and I just can't be bothered really” (T17, 14♂). Conflict with other priorities: “I don't really forget to take it but if I'm like doing something and I feel tight and it's something that I don't want to be pulled away from then I won't take it” (T4, 13♂). Adverse effects: “When I'm reaping all the side effects and I was just thinking, you know, nuts to this, look at me I'm a mess and asthma is ok I'm just not gonna take them for a while to see what happens” (T14, 18♂).

  • Not using a spacer with metered dose inhaler. Too time consuming: “Erm it's just you could just take it once through your mouth and just hold your breath for 10 seconds or you have to take puff it once through the spacer and breathe in and out for 10 its just quicker to take it-just squirt it in your mouth” (T17, 14♂). Cannot be bothered: “I need to look for the spacer most of the time and I'm like, ‘oh I can't be bothered to look for this, let's just take it without the spacer’” (T7, 11♂). Not reported: “I usually say ok in the (clinic)… whilst I'm talking to them (healthcare professional) but when I get home I just forget” (T17, 14♂).

  • Preference for a breath activated or dry powder inhalers: “Err cos they're like much easier to use than the others. … Erm well cos they're like erm just like breath activated whereas the other ones you've got to push them” (T19, 16♂). But not all agree: “I had that er the one that you lift or something … oh yeah its like powder, I didn't like that coz it didn't like my chest for some reason” (T11, 13♂). And some do not use these inhalers properly: “No to be brutally honest I take the top off and rip the thing off, I just use it normally. … It is a bit of an effort rather than just a quick fire. … And it's big, it's like that sticking out of your pocket whereas a little inhaler” (T14, 18♂).

Identity and interaction with others

  • Side effects from medications: “I'm not worried about the steroids, its just I'm putting on too much weight, I mean 9lbs I'm nearly 11 stone—its disgusting, its not normal … I'm just heavier than everyone else, I look weird compared to everyone else” (T5, 11♂). “It's cos I'm short, cos I have to take my steroids it actually stunts my growth. … So I am a lot shorter than every one … so annoying, everyone does look at me differently, they always treat me different. … It's hard to get a girlfriend (when you are) short believe me” (T20, 14♂).

Activities and hobbies

  • Using medications to improve lifestyle: “I did have that decision when I was about 10 but now that I'm actually taking it, it's actually improving my lifestyle so I can do more things, coz I like sort of didn't want to be told that I like had to take all this medication, I didn't really like wanna be different from all the other kids … but now I sort of fit in better now that I've actually taken all of it” (T6, 12♂).

Experience and experimentation

Most adolescents thought that their medicines worked although some thought they only worked sporadically. A few adolescents talked about reasons for complying with medication, some talked about previous experiences of an exacerbation following poor adherence with medicines.

Intentional non-adherence with therapy was common and almost all were not taking their medications as prescribed. Many were taking too little but a few were overdosing on their preventer medications when they felt that they may be likely to experience an exacerbation. Table 1 describes how often adolescents reported that they failed to take their prophylactic medication in the study questionnaire. There was only fair agreement (κ 0.23, p=0.03) between adherence reported by adolescents and parents with parents underrating how often their child forgot their medication. There was even less agreement between the adolescents and their paediatricians (κ 0.05, p=0.34) with physicians under and overrating adherence. In the interviews many adolescents said they simply forgot to take their medication. Many also talked about why they were intentionally non-adherent. A lack of perceived effect was mentioned by a few adolescents and some described just not being ‘bothered’. Some adolescents talked about their asthma medication regimen conflicting with other priorities.

Table 1

Adherence with prophylactic therapy as reported by teenager participants, their parents and physicians

Interview data also highlighted that many of the adolescents were prescribed a metered dose inhaler to use with a spacer device for delivery of both their reliever and preventer medications, but almost all were not using the spacer. Reasons for this included that the spacer, ‘takes too much time’, and that they, ‘can't be bothered’ with it. A couple of adolescents talked of deliberately not reporting this to a healthcare professional. Of the adolescents prescribed a breath activated or dry powder device, most had switched because they ‘didn't like’ the spacer. However, a couple of adolescents did not like the breath activated/dry powder inhalers and a few admitted to not using these inhalers properly either.

Identity and interaction with others

A minority talked about the adverse effects of the medications such as weight gain influencing their decision to be non-concordant with therapy. This is an example of the effect of treatment on their self-image and its perceived effect on their interaction with peers.

Activities and hobbies

Some adolescents mentioned that taking medications had improved their lifestyle and helped them to better integrate with their peers.

Interaction with healthcare professionals and adherence with their advice

Responsibility

The majority of adolescents attended clinic with a parent. Some felt parents were needed to report symptoms on their behalf. Some of the adolescents also needed a parent to ‘translate’ terms used in clinic and others felt that they needed them to take responsibility for remembering what was discussed and decided with the healthcare professionals. Most adolescents felt though that they were part of the consultation (see box 2).

Box 2 Interaction with healthcare professionals

Responsibility

  • Parents taking responsibility for remembering what was discussed and decided: “Mum coz she remembers what I'm taking and what all the medications are for otherwise I get them all muddled up” (T6, 12♂).

  • Parents needed to be present report symptoms: “I forget very quick and my mum don't” (T16, 15♂).

  • Parent required to ‘translate’ terms used in clinic: “I dunno coz sometimes they say stuff and I don't really understand what they're saying but my mum or my step dad does and then they'll say something and I'll say, ‘yeah’ but then I dunno what it means—I'll just keep going, ‘yeah’, like I try to think so I gotta understand but I don't” (T16, 15♂).

  • Felt part of the consultation: “Talk to me about as much as they talk to my parents” (T1, 11♂).

Experience and experimentation

  • Not attending outpatient clinic: “It's quite annoying having to come here especially if it's good (weather) and I wanna go out boarding so yeah—its just quite an effort to come up really … Yeah, it's quite boring you just wait around” (T13, 17♂).

  • Advantages of attending clinic: “… if I hadn't come here my whole life with asthma, if I hadn't come here and known what asthma meant, medication I should have taken I would be dead by now” (T7, 11♂).

  • Missing school to attend clinic: “Even though it is I do miss out on school its worth it because my health—my health's better than education—it comes just above it because as much as I wanna be at school working I need to sort out my health” (T9, 15♂).

  • Smoking: “I don't know why I started smoking again … compared to how I was before I wasn't smoking and now, it hasn't really made a difference, probably because I don't smoke that much, if I smoked more it might affect me more…” (T21, 18♂).

  • Being seen in a paediatric clinic: “(It's) weird cos I see little toddlers running about and I'm 18 so … old enough to be father to most of them” (T14, 15♂).

Identity and interaction with others

  • Apprehension about attending clinic on their own: “I would really want mum to come with me, I'd be a lot more nervous, I wouldn't be as positive as I am now, but I try to do as much as I can, but with mum it's a lot more helpful and good and I feel that I can tell someone about myself with mum around” (T8, 11♂).

  • Not interested: “If I like talk to the Dr or something I sometimes get really bored—he's just going on about the same thing for about an hour—that's really annoying” (T10, 14♂).

  • Doctor prefer to see mother: “No coz I think the Dr would rather see her (mother)” (T5, 12♂).

  • Confidentiality: “yeah because I can say about some other stuff that I might need help with or mainly medical issues, but there's some stuff that you don't feel comfortable talking about around your mum” (T9, 15♂).

  • Seeing a doctor on their own: “Umm recently I have when I reached 17, 18. … When I was younger my mum had a bit more of a say … I'm an adult now so, I'm on my own basically … I don't get nervous or anything” (T14, 18♂).

Activities and hobbies

  • Denial of problem with pet exposure: “The dog it's not really, it's a bit of an issue when she sits on me coz it's just the strong sort of smell of the actual dog which makes me sort of short of breath, but as soon as she hops off my lap I'm like so much better again I don't even need to use my inhaler” (T6, 12♂).

  • Living with a smoker: “Mum and Dad like smoke but they don't smoke IN the house” (T1, 11♂).

Experimentation and experience

Most adolescents saw the advantage to attending clinic, in spite of having to miss school. But some felt that being seen among young children in a paediatric clinic was alienating. A few of the adolescents admitted to smoking themselves, in spite of advice about its negative consequences for their asthma.

Identity and interaction with others

Most adolescents were apprehensive about attending outpatient clinic on their own, some were just not interested and one girl thought the doctor wouldn't want to see her on her own.

Some of the older adolescents discussed confidentiality when talking about sensitive issues with regard to parents being present during the consultation. One of the oldest discussed coming to see the doctor on his own as a positive experience.

Activities and hobbies

All participants had ongoing asthma symptoms and the majority were not avoiding asthma triggers. Having a pet in the home was a common theme and most didn't recognise that this affected their asthma. The majority of adolescents talked about avoiding smoke, a known trigger. Some lived with a smoker and some had friends who smoked around them.

Discussion

This qualitative study demonstrates that this group of adolescents with severe, uncontrolled asthma experience considerable morbidity. This study highlights that this group has poor adherence with therapy, particularly with the use of spacers. Underlying this are incorrect beliefs about medicines in terms of their purpose and adverse effects, failure to remember treatment, a lack of motivation or competing priorities. This pattern of non-adherence was also seen in their continued exposure to triggers such as exhaled tobacco smoke and pets. These issues may, in part, reflect the less than ideal relationship that this study suggests adolescents have with their health professionals.

Interaction with healthcare professionals

Although adolescents felt they were involved in the clinic consultation and valued the session, many adolescents did not take responsibility for interacting with healthcare professionals. Parents were required to report symptoms, translate medical terms and remember what had been discussed and decided. The majority of adolescents felt uncomfortable about the prospect of attending clinic on their own, although some of the older adolescents could identify advantages to this, especially regarding the issue of confidentiality. A previous qualitative study of chronically ill adolescents' experiences of communicating with doctors has highlighted a number of barriers to effective communicating.16 These include a lack of consistency in medical staffing, presence of other medical professionals and the use of a condition-centred rather than a person-centred approach. As in this study, they also found that adolescents were ambivalent about the presence of a parent; although they needed the support they provided, adolescents felt inhibited about discussing challenging issues such as adherence with management and smoking. This lack of responsibility and engagement in the consultation by adolescents may lead to the incorrect and incomplete knowledge and beliefs they held about their medicines, as well as their lack of motivation and poor memory for taking their medicines. The important contribution that good communication between patient and healthcare professional can make to adherence is highlighted in the recent National Institute for Health and Clinical Excellence guideline on adherence.17 This along with the present study therefore highlights the need to take a specific adolescent approach seeing older adolescents alone, in an adolescent environment, establishing confidentiality, using developmental appropriate language and taking adolescents' other priorities into account when developing a management plan. Without this, they are unlikely to successfully self-manage their condition or make the move into an adult respiratory clinic.

Adherence with medication

This study highlights that adherence with medications is as poor in this group of severe asthmatics as milder ones.9 18 The reasons identified for this, such as forgetfulness and inconvenience, are similar to those identified in other studies involving adolescents with less severe asthma.9 17 As in other studies, some adolescents reported concerns about adverse effects of their medication, particularly inhaled corticosteroids.9 19 20 The most striking and novel finding from the present study however is the almost total non-adherence with spacer devices for the delivery of high dose inhaled corticosteroids. Such behaviour is likely to lead to both local and systemic side effects as well as reduced drug delivery to the lung.21 This may explain why a number of this group of teenage asthmatics are experiencing ongoing symptoms despite the prescription of high doses of inhaled corticosteroids. This information provides strategies to improve adherence with therapy and improve asthma control. For example, education can be specifically directed at why a spacer is required while other patients may benefit from being prescribed an appropriate breath activated or dry powder device.

Adolescents frequently have problems adhering to medications prescribed by health professionals.22 Their poorly developed abstract thinking may impair their ability to imagine the future consequences of undertreatment of their asthma. This, and the invulnerability that seems to be typical of adolescence, means that medium or long-term complications are not a strong motivating factor for adolescents. Thus they may overuse rapid acting bronchodilators, as they provide them with a degree of control of their asthma, while under-using prophylactic inhaled corticosteroids. The problem of this short-term focus is further magnified by the barriers that may exist between teenagers and health professionals as discussed above. National Institute for Health and Clinical Excellence guidelines on adherence recommend understanding patient's knowledge, beliefs and concerns, increasing patient involvement and providing information. There were some examples of engaged patients in this study who were adherent to their treatment. It is critical that health professionals explore teenager's beliefs and knowledge about their prescribed medication. If appropriate, they can then provide them with a clear rationale for their asthma medication, particularly inhaled corticosteroids, explaining why they are necessary, how they will improve their quality of life and why their benefits outweigh any risks.20 Adolescents should feel that their treatment plan has been developed in partnership with them to promote adherence with management, for example, some adolescents may prefer the variable preventer approach.23

Avoidance of asthma triggers

Another important factor highlighted by this study is the lack of trigger avoidance displayed by this subgroup of asthmatics. Almost all had either a pet or smoker in the home. Most did not either recognise or acknowledge that these affected their asthma. Despite all the education they had received in clinic, they were continuing to expose themselves to these triggers rather than further limiting their lifestyle.19 Developing an approach to help adolescents avoid these triggers without affecting their lifestyle remains an important challenge.

Limitations of the study

This is a relatively small study but data saturation was achieved as no new themes emerged in the last five transcripts. There was a suggestion from the transcript data that there is a transition in the themes from early to late adolescence in parallel with adolescent development.15 A larger study would have enabled us to address this issue. It is possible that the setting of the interviews in the paediatric outpatient department may have limited the narrative from some participants. The interviewer was a medical student, her identification as a trainee healthcare professional by the adolescents may have also influenced their narrative. Our sample did not include adolescents who chose to not attend their clinic appointment. It is important to understand this group to help them access medical care.

Implications of the study

This study has highlighted that severe asthma impacts on many aspects of adolescents' lives. Having severe asthma has the potential to adversely interact with the developmental tasks of adolescence including establishing autonomy and responsibility, gaining experience and developing identity and forming strong peer relationships. Adolescents need to know that their clinicians understand what having asthma means to them and take this into account when making suggestions about avoiding triggers and deciding on the appropriate treatment strategy. Non-adherence with treatment was found to be very common, particularly for spacer devices. This must be considered when deciding on an appropriate management plan. Healthcare professionals must elicit adolescents' beliefs and knowledge about their medicines and provide information accordingly. Adolescents must be involved in the development of their treatment plans to promote adherence with management. Adolescents with other chronic diseases are likely to experience similar issues. This study also highlights the challenge of transition from paediatric to adult services as many of the older adolescents were still very reliant on their parents' help to manage their asthma. All these issues may be best addressed by providing specific training for paediatricians in adolescent medicine. This will help them provide a specific adolescent approach within their clinical service, promoting self-management, independence and autonomy and improving the health experience of their adolescent patients.

Acknowledgments

The authors would like to acknowledge the staff at the three sites who helped with the study, in particular Gary Connett, Julian Legg, Hannah Buckley, Tricia McGinty, Solena Lovic, Sharon Matthew, Heather McKenzie and all the Wellcome Trust Clinical Research Facility team. The authors would also like to thank the adolescents and their families.

References

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Footnotes

  • Funding University of Southampton.

  • Competing interests None.

  • Ethics approval This study was conducted with the approval of the Southampton and South West Hampshire Local Research Ethics Committee.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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