Abstract
Purpose:
To assess factors that influence adolescent asthma responsibility and how patient- and parent-reported asthma responsibility changes over a 12-month period.
Methods:
One hundred sixty-four adolescents and their parents completed questionnaires at baseline and 12 months, including the asthma responsibility questionnaire, in which higher scores indicate greater adolescent responsibility. Multiple linear regression was used to assess how baseline asthma responsibility, self-efficacy, outcome expectations, and demographic characteristics were associated with 12-month asthma responsibility.
Results:
Asthma responsibility as reported by both adolescents and parents shifted significantly toward the adolescent over the study period (p<0.001). Most individual scale items (e.g. noticing signs and symptoms of asthma, starting treatment when symptoms occur) also showed significant shifts toward greater adolescent responsibility. In the regression models, higher baseline asthma responsibility and older age were significant predictors of both higher adolescent- and parent-reported 12-month asthma responsibility, while female gender and mild asthma severity also predicted higher parent-reported asthma responsibility.
Conclusions:
Asthma responsibility shifted toward adolescents over a 12-month period. Regardless of age and gender, all types of adolescents were able to improve their responsibility level based on adolescent-reported results. Older females, according to parent reported results, were more likely to improve their responsibility. Providers need to make sure adolescents are learning all the necessary skills to manage asthma independently before they reach adulthood.
Keywords: asthma responsibility, patient education, adolescent responsibility, self-management, transition to adulthood
Introduction
Over 5 million children under 18 have asthma in the US,[1] and over half of those children have had an asthma attack in the last year.[1] Among children under 15, asthma is the third leading cause of hospitalization.[2] Adolescents with an asthma diagnosis and asthma symptoms report increased social anxiety and discomfort when compared to adolescents without asthma.[3]
The Global Initiative for Asthma guidelines for Asthma Management recommends both adolescent and adult patients with asthma should be given training on how to use their inhaler devices and how to self-monitor their asthma symptoms.[4] Studies of interventions to increase asthma self-management in adolescent patients have resulted in fewer emergency department visits and reduced levels of hospitalization.[5, 6]
Asthma responsibility for adolescents is the extent to which an adolescent is responsible for the self-management of their asthma within their household.[7, 8] Higher asthma responsibility scores in adolescents are associated with higher quality of life.[9] Many factors such as adolescent comorbidities (e.g. attention deficit hyperactivity disorder) and age can influence these asthma responsibility scores in both adolescents and their parents.[7, 10] Adolescents, on average, see themselves as having more asthma responsibility than their parents perceive them to have.[9] When asthma responsibility in adolescents is measured longitudinally, both adolescents and parents report that adolescents asthma responsibility increases over time.[7]
Self-efficacy is defined as the belief that one will be effective at performing a behavior or skill,[11] such as asthma management. Self-efficacy is a construct of Social Cognitive Theory, and having higher self-efficacy results in better management of chronic conditions such as asthma.[12] In previous studies, adolescents who have higher levels of self-efficacy report better quality of life than those who are less confident in managing their own asthma.[13–15]
The purpose of this manuscript is to follow pediatric patients with asthma between the ages of 11–17 over a 12-month study period to assess factors that influence asthma responsibility and how patient- and parent-reported asthma responsibility changes over time. We wanted to find out if patterns of asthma responsibility had changed since the last longitudinal study conducted two decades ago.[7] In accordance with Social Cognitive Theory, factors that were investigated included self-efficacy, outcome expectations, sociodemographic factors, and clinical characteristics.
Methods
Procedure
This study was approved by the Institutional Review Board at the University of North Carolina at Chapel Hill. Clinic staff briefly explained the study to all families present for a medical visit whose adolescent was between the ages of 11 and 17 and had an asthma diagnosis. The clinic staff referred interested families to a research assistant to learn more about the study. During pre-visit wait time, the research assistant explained the study, obtained parent consent and adolescent assent, and administered an eligibility screener.[16, 17] Participation in the study involved completing questionnaires at baseline, 6 months, and 12 months, and for families randomized to the intervention group, completing a question prompt list and watching an educational video before seeing the provider; each family’s time with the provider was audio-recorded to understand the communication that occurred during visits. Families were enrolled in the study between June 2015 and November 2016, with follow-up visits continuing until November 2017. The 12-month visit could occur anytime between 9 and 15 months after the baseline visit. The present study is a secondary analysis of families in the control group only.
Adolescents were eligible if they were: ages 11 to 17 years; spoke and read English or Spanish; had persistent asthma; were present for an acute or follow-up asthma visit or a well-child visit; had previously visited the clinic at least once for asthma; and the parent present with them at the office visit was a legal guardian who had knowledge of their asthma. Using information from the eligibility screener that parents completed with the research assistant, persistent asthma was defined as experiencing asthma-related daytime symptoms more than twice a week, asthma-related nighttime symptoms more than twice a month, or receiving one or more long-term controller therapies for asthma.[18, 19] All adolescents were interviewed after their medical visits at baseline and 12 months by a research assistant while their parents completed questionnaires. We chose to interview adolescents to make sure they understood the questions and selected valid responses. The parent questionnaire was written at a sixth-grade reading level. Adolescents and parents each received $25 for their time at each visit.
Measures
Adolescent age, years the adolescent has been living with asthma, and parent years of education were measured as continuous variables. Adolescent gender was measured as a dichotomous variable. Adolescent race was coded into five categories: Caucasian, African American, Native American/American Indian, Hispanic, or Other. Adolescent race was recoded as Caucasian and non-Caucasian for bivariate and multivariate analyses. Asthma severity was classified as mild persistent versus moderate/severe persistent according to the National Heart Lung and Blood Institute’s guidelines.[20, 21] Primary language spoken at home was measured as a dichotomous variable (English, Spanish).
Adolescent-reported asthma management self-efficacy was measured at baseline and 12 months using a 14-item scale that has a reliability of 0.87.[22, 23] Respondents were asked how sure they can do things to help their asthma such as have inhalers with them when they have an attack, know how to use an inhaler correctly, avoid allergens, etc. We calculated the total asthma management self-efficacy score as a continuous measure for each adolescent; higher scores indicate greater self-efficacy.
Adolescent asthma management outcome expectations was measured at baseline and 12 months as a continuous variable using an adapted version of Holden’s 5-item asthma outcome expectations scale.[24] Outcome expectations indicate the degree to which adolescents believe that certain behaviors, such as taking medication or avoiding triggers, will help their asthma. The scale has internal consistency reliability of 0.64, and higher scores represent more positive outcome expectations for following asthma treatment strategies.
The asthma responsibility questionnaire is a validated 10-item scale of asthma management tasks (e.g. avoiding triggers, knowing when to use an inhaler).[7, 25] Adolescents and parents completed the questionnaire at baseline and 12 months so that their responses can be compared. Response options for each task range from 1 (the parent is completely responsible) to 5 (the adolescent is completely responsible). For this study, the majority of adolescents and a near-majority of parents reported that the item “using a peak flow meter by myself” was not applicable; therefore, the summary score was calculated as the sum of the other nine items. Higher scores on individual items and on the summary score indicate higher adolescent responsibility.
Analysis
All analyses were conducted using IBM SPSS Statistics version 26. Descriptive statistics were computed for all demographic variables as well as the asthma responsibility and self-efficacy scales. Paired t-tests were used to compare the adolescent-reported and parent-reported asthma responsibility scores, as well as individual items on these scales, at baseline versus 12 months. Multiple linear regression was used to assess how baseline adolescent-reported asthma responsibility, adolescent age, adolescent gender, adolescent race, asthma severity, parent years of education, language spoken at home, 12-month adolescent self-efficacy, and 12-month adolescent outcome expectations were associated with 12-month adolescent-reported asthma responsibility. Multiple linear regression was also used to assess how baseline parent-reported asthma responsibility, adolescent age, adolescent gender, adolescent race, asthma severity, parent years of education, language spoken at home, 12-month adolescent self-efficacy, and 12-month adolescent outcome expectations were associated with 12-month parent-reported asthma responsibility. All variables were entered into the linear regression models in one step.
Results
One hundred seventy-four families participated, of whom 164 completed the final 12-month interview, allowing them to be included in the analysis. Thirteen percent of eligible families declined to participate; the main reasons for refusal were lack of time, adolescent’s asthma is under control, and adolescent refused with no reason given. A slight majority of adolescents were male, with almost equal numbers of Caucasian (40.9%) and African American (37.2%) adolescents (Table 1). Just over half had moderate to severe asthma. Just over five percent of families spoke Spanish at home. Adolescents’ average age at the time of the baseline visit was 13.1 and they had asthma for an average of almost ten years.
Table 1:
Adolescent and Parent Demographic and Adolescent Asthma-Related Characteristics (N=164)
| Characteristics | Percent (N) |
|---|---|
| Adolescent Gender | |
| Male | 55.5 (91) |
| Female | 44.5 (73) |
| Adolescent Race/Ethnicity | |
| Caucasian | 40.9 (67) |
| African American | 37.2 (61) |
| Hispanic | 9.1 (15) |
| Native American | 9.8 (16) |
| Other | 3.0 (5) |
| Asthma Severity | |
| Mild | 45.1 (74) |
| Moderate/Severe | 54.9 (90) |
| Parent Gender | |
| Male | 12.8 (21) |
| Female | 87.2 (143) |
| Parent Race | |
| Caucasian | 50.0 (82) |
| Non-Caucasian | 50.0 (82) |
| Primary language spoken at home | |
| English | 94.5 (155) |
| Spanish | 5.5 (9) |
| Mean (SD), Range | |
| Youth Age | 13.1 (1.9), 11–17 |
| Years Living with Asthma | 9.9 (4.0), 1–17 |
| Parent Age | 43.2 (9.3), 19–76 |
| Parent Education (in years) | 13.9 (3.5), 4–26 |
| Child self-efficacy summary score at 12 months | 59.7 (7.2), 36–70 |
| Child outcome expectations summary score at 12 months | 39.1 (6.6), 5–45 |
Table 2 shows the change from baseline to 12 months in adolescent-reported responsibility for each asthma management task. The summary score significantly increased from 27.27 at baseline to 30.55 at 12 months (p<0.001), indicating increased adolescent responsibility for asthma management, and all but two individual scale items also significantly increased. The items that did not show significant change were telling teachers about asthma and using a peak flow meter.
Table 2:
Comparison of Adolescent- and Parent-Reported Responsibility for Asthma Management Tasks at Baseline and 12 Months (N=164)
| Asthma Management Task | Baseline Mean (Adolescent) | 12 Month Mean (Adolescent) | Baseline Mean (Parent) | 12 Month Mean (Parent) |
|---|---|---|---|---|
| Noticing signs and symptoms of an asthma episode starting or getting worse | 2.68 | 3.17*** | 2.59 | 2.87** |
| Starting treatment (taking an inhaler, nebulized treatment) when symptoms occur | 2.91 | 3.37*** | 2.69 | 3.00** |
| Taking regular inhaler (like a regular morning dose) | 3.45 | 3.70* | 2.93 | 3.34*** |
| Noticing when medications are running out and will need to be refilled soon | 2.63 | 3.12*** | 2.05 | 2.50*** |
| Remembering to take a preventive medication when you are going to be exposed to a trigger (e.g. exercise) | 2.98 | 3.30** | 2.57 | 2.80* |
| Avoiding triggers (if cat allergy, staying away from cats) | 3.19 | 3.55** | 2.63 | 2.96** |
| Remembering to take the inhaler (or other treatment) along if you are going to be away from home | 3.16 | 3.45** | 2.56 | 2.87** |
| Telling teachers about your asthma (letting them know you have asthma, explaining the symptoms) | 3.04 | 3.23 | 2.27 | 2.74*** |
| Making decisions about adjustments in activity when symptoms occur (e.g. slowing down, sitting out of game) | 3.22 | 3.67*** | 2.80 | 3.09** |
| Using a peak flow meter by myself | 2.74 | 3.05 | 2.60 | 2.92 |
| Summary score | 27.27 | 30.55*** | 23.09 | 26.16*** |
p<0.05
p<0.01
p<0.001
N=164 for all tasks except “Using a peak flow meter by myself”, where N=57 for adolescents and 84 for parents.
Table 2 also shows the change from baseline to 12 months in parent-reported responsibility for each asthma management task. As with adolescent-reported responsibility, the summary score for parent-reported responsibility indicated increased adolescent responsibility for asthma management tasks over time, rising from 23.09 to 26.16 (p<0.001). The only task that did not show significant change was using a peak flow meter. Parent-reported responsibility was about 4 points lower than adolescent-reported responsibility at both time points.
Adolescents took less responsibility as reported by parents (t=1.997, p=0.047) if they were on one or more long-term controller medications, but there was no significant difference in adolescent-reported responsibility between adolescents who were on controller medications and those who were not.
Table 3 shows the multiple linear regression results predicting adolescent-reported asthma responsibility at 12 months. Higher baseline asthma responsibility and older age were significant predictors of higher asthma responsibility at 12 months. Other demographic characteristics, self-efficacy, and outcome expectations did not significantly predict adolescent-reported asthma responsibility.
Table 3.
Linear Regression Model Predicting 12-Month Adolescent-Reported Asthma Responsibility (N=164)
| Independent Variable | Beta (95% CI) | P-value |
|---|---|---|
| Baseline adolescent-reported asthma responsibility | 0.38 (0.24, 0.53) | <0.001 |
| Adolescent age | 0.61 (0.05, 1.16) | 0.033 |
| Adolescent gender – female | 0.52 (−1.52, 2.56) | 0.62 |
| Adolescent race – Caucasian | 1.72 (−0.40, 3.83) | 0.11 |
| Asthma severity – Moderate to severe | 0.37 (−1.67, 2.42) | 0.72 |
| Parent years of education | 0.02 (−0.29, 0.33) | 0.90 |
| Family speaks Spanish at home | 0.65 (−3.93, 5.23) | 0.78 |
| Adolescent self-efficacy | −0.03 (−0.17, 0.12) | 0.71 |
| Adolescent outcome expectations | 0.15 (−0.01, 0.31) | 0.06 |
R2=0.273
Table 4 shows the multiple linear regression results predicting parent-reported asthma responsibility at 12 months. Significant predictors were higher baseline asthma responsibility (meaning the adolescent takes more responsibility), older age, female gender, and mild asthma severity. Other demographic characteristics, self-efficacy, and outcome expectations did not significantly predict parent-reported asthma responsibility.
Table 4.
Linear Regression Model Predicting 12-Month Parent-Reported Asthma Responsibility (N=164)
| Independent Variable | Beta (95% CI) | P-value |
|---|---|---|
| Baseline parent-reported asthma responsibility | 0.47 (0.33, 0.62) | <0.001 |
| Adolescent age | 1.36 (0.76, 1.94) | <0.001 |
| Adolescent gender – female | 2.76 (0.67, 4.84) | 0.010 |
| Adolescent race – Caucasian | 2.19 (−0.03, 4.42) | 0.053 |
| Asthma severity – Moderate to severe | −2.40 (−4.52, −0.28) | 0.027 |
| Parent years of education | 0.24 (−0.08, 0.56) | 0.14 |
| Family speaks Spanish at home | −0.04 (−4.79, 4.71) | 0.99 |
| Adolescent self-efficacy | 0.06 (−0.10, 0.21) | 0.48 |
| Adolescent outcome expectations | 0.14 (−0.03, 0.31) | 0.10 |
R2=0.457
Variance inflation factors did not exceed 1.240 for any variables, suggesting that collinearity was not a significant problem in either of the two regression models.
Discussion
We found that asthma responsibility, as reported by both adolescents and parents, shifted significantly toward adolescents over a 12-month period. Both adolescent-reported and parent-reported data showed that older adolescents took greater responsibility for their asthma. The trends were consistent across a wide variety of tasks that adolescents must learn to perform, including noticing signs and symptoms, using rescue and control medications, and avoiding asthma triggers. Telling teachers about one’s asthma was one exception, where adolescents thought they improved in taking responsibility, but parents disagreed. Further studies should try to understand the reasons for this discrepancy.
We observed somewhat smaller differences between adolescent and parent reports of asthma responsibility than Netz et al.,[9] possibly due to a somewhat older average age, which would have averaged around two years older than the population described by Netz by the time of our 12-month interview. Parent-reported asthma responsibility ranged between 2.50 and 3.34 for the ten individual scale items in our study, compared to between 1.65 and 2.77 in the study by Netz et al.[9] Adolescent-reported asthma responsibility was more similar between the two studies, with most items showing a mean score between 3 and 4. Our sample also differed from the sample of Netz et al. by being drawn from primary care clinics rather than pulmonary clinics, which might explain some differences. We did find that both adolescent and parent reports of asthma responsibility shifted toward the adolescent with older age, unlike Netz et al., but similar to earlier work.[7, 9, 26] Although our findings suggest older adolescents do eventually take greater responsibility for asthma management, early adolescence is not too young for adolescents to start taking responsibility for many tasks.
After 12 months, parents still reported lower adolescent responsibility for asthma management tasks than adolescents themselves reported. Our data do not allow us to tell whether parents or adolescents had more accurate perceptions of who is taking responsibility, but future studies could investigate this. Adolescents do want to take charge of their healthcare and learn to manage their asthma themselves; adolescents in our advisory group suggested they wanted a video module on “how to get mom off your back” so they could learn to take more responsibility.[27] However, partnering with the whole family is also important since parents continue to take responsibility for many tasks, especially for younger adolescents. It is important for parents to also become confident that they can manage asthma-related emergencies and know which medications their child should take and when.
Unlike in our baseline data, we did not find that adolescent self-efficacy was significantly associated with asthma responsibility. Some adolescents may feel high self-efficacy to manage asthma-related tasks even though their parents are taking most of the responsibility for the key tasks. Providers need to make sure that adolescents are learning to manage their asthma on their own to prepare them for living independently. Mild asthma severity was associated with higher parent-reported asthma responsibility of the adolescent, although severity was not associated with adolescent-reported asthma responsibility. Adolescents with more severe asthma may need more provider education to learn to manage their asthma independently. Future research should investigate how to more effectively address the educational needs of adolescents with severe asthma to minimize occasions where they require emergency care.
The study is limited in generalizability in that it was conducted in four pediatric clinics in North Carolina. Another limitation is that we did not assess the literacy level of the parent or adolescent. We recruited adolescents from primary care clinics; the results might have differed if adolescents were recruited from specialty clinics or non-clinic settings. Most parents who participated were female, so results might have been different if more fathers had been included. A strength of the study was a racially and ethnically diverse sample. Despite the limitations of the study, it provides new information on the process of adolescents assuming responsibility for asthma management over a 12-month period.
Implications and Contribution:
Adolescents learned to take greater responsibility for their asthma over the course of a 12-month study period. Older adolescents showed greater responsibility for asthma management tasks, but there is still room for improvement in asthma patient education.
Acknowledgments/Funding:
This work was supported by the Patient-Centered Outcomes Research Institute (grant number CDR-1402-09777). Dr. Sleath is also supported by the National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (Grant Award Number UL1TR002489). The sponsor had no role in study design; the collection, analysis, and interpretation of data; the writing of the report; or the decision to submit the manuscript for publication.
Footnotes
The authors have no conflict of interest.
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