Internet-Based Self-Management Offers an Opportunity To Achieve Better Asthma Control in Adolescents^* FREE TO VIEW

Asthma is the most common chronic disease among adolescents. Its prevalence in this age group is about 11% worldwide.¹ Despite the availability of potent medical treatment, there is a significant burden of asthma in children and teenagers.²³

Guided self-management strategies including self-monitoring, continuous education, regular medical review, and a written action plan have been shown to be effective in clinical trials.⁴⁵ The recently updated Global Initiative for Asthma guidelines⁶ advocate ongoing self-assessment of asthma control as part of a written personal asthma action plan. However, patients and doctors are not enthusiastic about paper-and-pencil self-management programs, and participation rates are low.⁷⁸ Structural barriers to participate in a self-management program should be overcome, and personal benefits should be appreciated.⁸⁹ Lemaigre et al⁹ have demonstrated the importance of external barriers such as time and distance from a medical center to predict the intention to participate in self-management programs. The role of intrinsic barriers such as attitude and perceived ability to manage asthma is unknown.

Internet and short message service (SMS) are potentially powerful tools through which guided self-management programs can be delivered to adolescents with chronic disease.^1011121314 To date, it is unknown whether the internet and SMS can help to overcome intrinsic barriers and can reveal the personal benefits of asthma self-management in adolescents. Since asthma control predicts acute health-care utilization,¹⁵ the level of asthma control might identify those patients who benefit the most from a self-management intervention program.

We conducted focus group interviews with adolescents with asthma. Our aim was (1) to reveal intrinsic barriers to current asthma management and (2) to explore the barriers and benefits of internet-based self-management in patients with good and poor asthma control, stratified by gender and age.

Prior to the focus group sessions, we invited adolescents with asthma to participate in a 1-month observational study on internet-based lung function and symptom monitoring. Participants were recruited from 19 general practices (44 general practitioners) in and around Leiden, the Netherlands, and from the outpatient clinic of the Department of Pediatrics of the Leiden University Medical Center. Inclusion criteria were physician-diagnosed asthma, age 12 to 17 years, use of inhaled corticosteroids for at least 3 months in the previous year, no serious comorbid conditions that interfered with asthma treatment, access to the internet at home, and ability to understand Dutch. The study was approved by the Medical Ethics Committee of the Leiden University Medical Center. All participants gave written informed consent.

Ninety-seven adolescents consented to participate in the observational internet-based monitoring study (Fig 1 ). All participants received a hand-held electronic spirometer (PiKo1; Ferraris; Hertford, UK) and were trained to perform three maneuvers every morning before receiving medication, and to report FEV₁ and peak expiratory flow values by entering them daily into a designated Web application or via SMS during a 1-month period. Participants instantly received a return message with the FEV₁ and peak expiratory flow values expressed as a percentage of the expected or personal best value, respectively. These electronic return messages were not accompanied by any interpretation or treatment advice. The methods have been described previously.¹³ Weekly, the participants completed the Asthma Control Questionnaire (ACQ) via the internet. The Asthma Therapy Assessment Questionnaire (ATAQ) was filled in once.

In March and April 2005, following the electronic monitoring study, we conducted eight focus group sessions lasting 1 to 1.5 h. The goal was to recruit four to eight participants per focus group. We stratified the focus groups on the basis of asthma control, gender, and age (Fig 1).

Asthma control was measured through the ACQ and the control domain of the ATAQ.¹⁶¹⁷ The ACQ contains six questions on asthma symptoms and includes one lung function measurement (FEV₁). Scores range from 0 (well-controlled asthma) to 6. The control domain of the ATAQ for adolescents contains seven items; sum scores range from 0 (no control problems) to 7. Participants with well-controlled asthma were identified by low scores on both the ACQ (maximum ACQ score during 1 month, < 1.0) and the ATAQ (control score, 0). Participants with poorly controlled asthma were identified by a maximum ACQ score of > 1.0 and an ATAQ control score of ≥ 1.¹⁸¹⁹²⁰

Attitude and self-efficacy were measured using the Knowledge, Attitude and Self-Efficacy Asthma Questionnaire (KASE-AQ).²¹ Mean scores range from 1 to 5, with higher scores indicating a more positive attitude and higher self-efficacy toward asthma management.

We used the focus group procedures of Morgan and colleagues²² in preparing and conducting the sessions. One moderator and one observer guided the interviews according to a carefully constructed protocol (Table 1 ).

With regard to our first objective (adolescents’ intrinsic barriers to current asthma management), we used the theory of planned behavior as a theoretical framework.²³²⁴ It assumes that attitude, perceived social norm, and self-efficacy (ie, perceived ability) expectations determine a person’s intention to perform a specific behavior, in our case asthma management behavior.

In order to explore adolescents’ views on the barriers to and benefits of internet-based self-management, we addressed the four major elements of asthma self-management in the focus group discussions. These elements are self-monitoring of lung function and symptoms, transfer of information about asthma, regular medical review, and the use of an individualized action plan.⁷

All focus group sessions were audiotaped and transcribed in full for analysis. We analyzed the transcripts using methods of theory-based and data-based analysis. In theory-based analysis, the text is organized according to preexisting theoretical categories. In data-based analysis, units in the text are identified to form data-developed categories.²⁵ We coded the transcribed text into categories using a software program for qualitative data analysis (Nvivo, version 1.3; QSR International; Doncaster, VIC, Australia). The first two transcriptions were independently coded by two researchers (HvS and VvdM). Disagreements were solved after discussion. One author (HvS) coded the remaining transcriptions.²⁵

We counted the number of participants who made comments fitting a specific category. If a participant made many similar comments, these comments were counted only once. We present frequencies of categories and comparative statistics (Fisher exact test) to support our qualitative analysis and to provide insight into the representativeness of the statements.²⁶²⁷

Eighty patients were eligible for participating in the focus groups (well-controlled asthma, 33 patients; poorly controlled asthma, 47 patients). On the basis of asthma control, age, and gender, 56 adolescents with asthma were invited to participate, and 35 adolescents (62.5%) attended the focus group sessions. Sessions lasted on average 71 min (range, 40 to 100 min).

Patient characteristics are listed in Table 2 . Participants with poorly controlled asthma had significantly lower self-efficacy scores on the KASE-AQ self-efficacy subscale than participants with well-controlled asthma. Attitudes toward asthma did not differ between the groups (Table 2).

Participants experienced symptoms as annoying; however, nobody perceived asthma as a serious disease. A minority of participants expressed a negative attitude toward current asthma management. Two participants with well-controlled asthma expressed attitudes of laziness in taking medications and unwillingness to take medications; three participants with poor asthma control were bothered by the face-to-face medical reviews, since they had learned to live with their symptoms and saw no need for regular consultations (Table 3 ).

Only three participants with poorly controlled asthma reported negative social influences during sports and social activities (Table 3). They had experienced social rejection by teachers or peers at school, who took no account of the patient’s asthmatic symptoms.

About two thirds of the participants with poor asthma control expressed limited perceived ability to control asthma (Table 3). There were situations in which they felt helpless with regard to gaining asthma control. They thought nothing could be done about symptoms or about an attack. Patients said they experienced symptoms or an attack even after administering medication. The majority of these participants experienced symptoms, but said that they were used to symptoms as a part of everyday life and that they had learned to live with them (Table 4 ).

The majority of participants held the view that internet-based monitoring and reporting was feasible (Table 3). They mentioned that it was not time consuming and did not interfere with their daily activities. Sending lung function values and symptom scores via the internet or SMS was easy and fast.

Patients in the well-controlled group had fun doing the measurements but did not think it was very useful. They felt able to personally register deteriorating symptoms without using electronic lung function measurements or symptom scores. They did not observe benefits from daily electronic monitoring and feedback, since they did not experience any symptoms at the moment.

About a quarter of patients with poor asthma control reported the usefulness of measuring their lung function daily and getting instant feedback (Table 3). Observing symptoms and lung function over time and being able to react to changes in asthma were mentioned as personal benefits of internet-based monitoring, reporting, and feedback. Almost no one with poorly controlled asthma worried about monitoring for a long time (ie, > 1 year).

In general, participants noted that they had not obtained much information on asthma or asthma medication in the past. Some said that they had received some information many years ago, but could not remember what information or only remembered that they had not understand it.

A quarter of all participants expressed a need for information about asthma. Participants wanted to obtain information about the cause of asthma, the functioning of the lungs, and the mechanisms of asthma medication. We did not observe differences between participants with good and poor asthma control (Table 3).

The majority of participants did not express a need for extra information about asthma. They believed they had sufficient knowledge regarding how and when to use puffs of controller and reliever medications. Some participants with well-controlled asthma thought it would be useful to provide information about asthma to patients with more severe symptoms, but not to themselves. All patients agreed that if information was offered it should be offered through the internet and not through, for instance, leaflets or books from the Asthma Foundation. The internet is easy to use, is easily accessible (“I have a computer with internet connection in my bedroom”), and provides the opportunity to show graphics and short films. Most participants thought that just plain text was rather boring.

Most participants thought it was not necessary to visit their physician if their asthma was under control. Three patients even mentioned that doctor visits were annoying. During doctor visits, lung values were measured, and if these were acceptable, you could leave. Patients preferred to visit their doctor only when symptoms were getting worse.

Participants were enthusiastic about the internet-based review of lung function by sending lung function values and symptom scores to their physician via the internet or SMS, with the possibility of adding comments or questions (Table 3). Patients with both poorly and well-controlled asthma mentioned that e-mail communication and electronic consultation was useful (Table 5 ). Almost everyone used the computer daily. Most participants felt no need to see their physician or nurse in person for regular review.

Almost 80% of the patients with well-controlled asthma saw no need for an individualized written action plan (Table 3). They mentioned that they did not need it, that they already managed their asthma themselves, and that it was unpleasant or difficult to develop a personalized action plan with a health-care professional on how to adjust their treatment in response to worsening asthma control. Some said that it may be useful for others, but not for themselves. Only two participants were willing to use an electronic action plan, which involved daily monitoring, for a long period of time.

In contrast, two thirds of participants with poor asthma control mentioned that it was useful to formulate an action plan on the internet (Table 3). They appreciated receiving messages when lung function or symptoms deteriorated, and they valued advice on how and when to change asthma medications. Participants with poorly controlled asthma were able and ready to use an internet-based asthma self-management plan for a long period of time (ie, at least a year).

We conducted focus group interviews with adolescent asthma patients to reveal the intrinsic barriers in current asthma management and to explore the barriers and benefits of internet-based asthma self-management. A limited perceived ability to control asthma was the most striking barrier to current asthma self-management in adolescents with poor asthma control. Patients indicated their inability to adequately manage symptoms and, therefore, accepted the symptoms to a large extent. This particular group clearly expressed the following several benefits from internet-based asthma self-management: electronic monitoring and feedback; easily accessible information; e-mail communication; and an electronic action plan.

Our study protocol was unique in its design. Since we had performed an observational study on electronic lung function and symptom monitoring prior to the focus groups, we were able to identify patients with poorly controlled and well-controlled asthma and to focus on the differences between these groups. The most striking difference in intrinsic barriers to current asthma management between patients with poorly controlled and well-controlled asthma was the fact that the former group did currently not feel able to manage asthma and accepted asthma symptoms as part of their everyday life. It is, however, well known that there is no need to accept asthma symptoms, since good asthma control can be achieved in the vast majority of patients.²⁸ In the context of guided asthma self-management, it is important for patients to become aware of achievable asthma control through information and education and to empower patients in self-managing their asthma by using feasible management programs.

Another advantage of the study design is that patients participated in electronic monitoring via the internet and SMS prior to the focus group sessions, which informed their opinions. In contrast to the use of a questionnaire survey¹⁴ and a recent study²⁹ using discrete choice experiments with hypothetical scenarios, which raised concerns about workload and interference with day-to-day lives, we learned that electronic monitoring and reporting was no burden at all and was easy to incorporate into the daily activities of adolescents. Previous studies³⁰³¹ have doubted the compliance and reliability of home monitoring by asthmatic patients when they were also required to keep a conventional paper diary. However, the use of electronic monitoring alone appears to improve outcomes of compliance and reliability, and may thus provide a useful tool in guided self-management.¹³³²

Some patients expressed a need for information on, for example, the cause of asthma, the functioning of the lungs, and the mechanisms of asthma medication. From the intrinsic barriers to manage asthma, which was mentioned by participants with poorly controlled asthma, we learned that there is room for the improvement of self-efficacy activities. Inaccurate beliefs about the need to accept asthma symptoms and the cause of asthma can be addressed during information or education sessions. Participants have indicated that the internet is the most convenient way for obtaining information on asthma, rather than, for instance, reading the leaflets produced by the Asthma Foundation. The preference for using internet-based information over leaflets is likely to relate to the existing practices of this particular age group but would not necessarily be reported by elderly patients.¹¹

Adolescents’ views on regular medical review are in concordance with what we know from adult interviews.³³ Face-to-face consultations are appropriate in those patients with deteriorating asthma but are not accepted for reviewing the conditions of participants with well-controlled asthma. Participants did not mind communicating by e-mail or SMS without having face-to-face contact with a health-care provider.

In accordance with previously published focus group research in which patients did not appear to be enthusiastic about guided self-management plans,⁸ we observed that patients with good asthma control are not willing to use self-management plans. They did not think that these plans are useful for them or they believed that they were already managing their asthma competently. In contrast, most participants with poorly controlled asthma favored the further use of electronic self-management plans.

A limitation of our study is that we counted only verbal statements made in the focus groups. A drawback of this analysis is that nonverbal expressions are not counted (eg, nodding agreement with a statement made by another participant).²⁵ Nevertheless, in our opinion these quantitative counts of verbal utterances support our qualitative findings.

A second limitation concerns the selection of patients. Since 63% of patients responded to our invitation to join the focus groups, we must be cautious in generalizing our results. We may have observed the opinions of a selected group of patients who were willing to participate in asthma self-management programs. On the other hand, this assumption does not hold in patients with well-controlled asthma who were reluctant to use guided self-management plans.

Our findings reveal that there is a need to overcome the limited perceived ability for current asthma management in adolescents with poor asthma control. Internet-based self-management appears to be a powerful tool to overcome limited self-efficacy in this group of patients. Adolescents with poorly controlled asthma recognize the extensive potential benefits of internet-based self-management, and are ready and able to use a guided self-management program including the internet and SMS over a long period of time (ie, at least 1 year). This group can be easily identified by administering short questionnaires on asthma control. Adolescents with well-controlled asthma are unlikely to use internet-based self-management programs. Internet-based self-management should therefore target adolescents with poor asthma control.

W.J.J. Assendelft, MD, PhD; E.H. Bel, MD, PhD; S.B. Detmar PhD; J.C. de Jongste, MD, PhD; A.A. Kaptein, PhD; V. van der Meer, MD; W. Otten, PhD; K.F. Rabe, MD, PhD; E.R.V.M. Rikkers-Mutsaerts, MD; A.C. Roldaan, MD, PhD; J.K. Sont, PhD; H.F. van Stel, PhD; P.J. Sterk, MD, PhD; H.A. Thiadens, MD, PhD; and P.J. Toussaint, PhD.