“It is kind of like a responsibility thing:” Transitional challenges in asthma medication adherence among adolescents and young adults

Abstract

Objective:

Nonadherence to asthma medications is prevalent among adolescents and young adults (AYAs) with asthma, leading to worsened control of asthma symptoms and more frequent exacerbations. AYAs have unique developmental transitional challenges that may alter medication adherence. We aimed to use a socio-ecological framework to explore the effect of transitional challenges from adolescence to young adulthood on asthma controller medication adherence and to identify possible strategies to promote medication adherence.

Methods:

We conducted qualitative semi-structured interviews by phone with 7 adolescents (14 to 17 years), their respective caregivers, and 7 young adults (18 to 30 years). Participants were recruited from a respiratory clinical trial network and pulmonary clinics in 4 states at 6 different sites through convenience sampling. Interviews were audio recorded, transcribed and coded using thematic analyses.

Results:

Participants identified personal challenges affecting adherence to asthma medications during the transition from adolescence to young adulthood including responsibility for asthma self-management, understanding of asthma condition and severity, embarrassment, and life demands. Health systems factors including medication cost, challenges with insurance, difficulties obtaining refills, and difficulty with access to medications at school also impacted asthma medication adherence. Participants recommended adherence strategies including improved access to inhalers, incorporating asthma medications into daily routines, and using reminders.

Conclusions:

Focusing on the transitional challenges of AYAs during the time period from adolescence to young adulthood is necessary for supporting their asthma medication adherence and creating future interventions. Socio-ecological and systems factors should also be targeted for improved asthma medication adherence.

Introduction

Asthma is a leading chronic condition among children and adolescents.¹ In recent years, asthma prevalence rates have continued to rise among adolescents, despite trends showing declining asthma prevalence among younger age groups.² For optimal management of asthma, guideline based therapy recommends use of short acting medications for acute symptom relief and daily use of controller therapies to prevent exacerbations for patients with persistent asthma symptoms.^3,4 Nonadherence to asthma medication regimens leads to worse control of symptoms and more frequent exacerbations.⁵

Adherence to asthma medications is often inadequate among AYAs, ranging between 30–70%.^6,7 While adolescents are less studied than other age groups, there is concern that adolescents have lower adherence compared to young children and adults,⁷ with studies showing decreasing adherence rates as children age.⁸ To improve asthma control, understanding the unique barriers to adherence present during the transition period from adolescence to young adulthood with asthma is necessary. Notably, adherence to prescribed medications is influenced by both characteristics of the individual, and by factors within an individual’s environment.⁹ A socio-ecological model can help understand the individual, interpersonal, community, and societal factors^10–12 that may impact adherence to asthma medications.

During adolescence, a number of individual physical and emotional changes, interpersonal social peer relationship changes, and community and systems changes may make asthma medication adherence challenging. Based on the social-ecological model, on an individual level, adolescents progress to take on more mature roles expected of them in adulthood. As teenagers become older and more autonomous, they assume more responsibility in self-management of medications with reduced parental supervision.¹³ Prior studies among adolescents suggest individual factors contributing to nonadherence include forgetfulness, lack of routines, perception of no benefit from taking medications, negative beliefs about inhaler therapy, difficulty using inhalers, and limited engagement in self-management.^14–18 As adolescents transition to young adults, their executive functioning further develops, which is critical to assessing benefit and risk when making decisions. Notably, young adults may have their own challenges with adherence to asthma medications including normalization of chronic symptoms, misperceptions about inhalers, and belief there was not enough personal benefit in medical interactions to make preventative asthma care worthwhile.¹⁹

On an interpersonal level, adolescents are influenced by their peer groups and wish to be socially accepted among peers, with social stigma being a prior factor identified contributing to nonadherence.²⁰ From a community and systems perspective, as adolescents with asthma age into young adulthood, they will transition care, or move from pediatric focused care to adult oriented health care as well as experience changes in their health care insurance.²¹ Young adults with asthma making the transition from pediatric to adult care have described the need to take more responsibility in transition.²² Additional systems factors such as insurance coverage and limited coverage for medications and extra cost may also influence asthma medication adherence.²³

Few studies have looked at transitional challenges to asthma adherence from adolescence to young adulthood, and no studies have considered these challenges through a socio-ecological framework. We aimed to better understand the impact of transitional challenges from adolescence to young adulthood on asthma medication adherence and identify potential strategies to promote adherence within the context of a socio-ecological framework and through a qualitative study using semi-structured interviews with adolescents, their caregivers, and young adults.

Methods

Participants

Participants were recruited from American Lung Association Airways Clinical Research Centers (ACRC) network in 4 states, at 6 different sites from February to August 2019. While some participants had previously expressed interest in participation in research studies, additional participants were recruited directly from pulmonary clinics at ACRC sites to ensure racial/ethnic diversity. To meet inclusion criteria for the study, participants were required to meet age criteria (age 14 to 17 years for adolescents and age 18 to 30 years for young adults) and adolescents were required to have a caregiver also willing to participate in a separate interview. Additionally, we prioritized adolescents and young adults (AYA) taking an inhaled corticosteroid in order to assess factors affecting use of a daily chronic medication. Participants were excluded if they did not speak English. Participants in this study were not actively participating in other clinical trials at the time of this study.

Procedures

IRB approval was obtained from Nemours Children’s Health with Johns Hopkins School of Medicine as a relying organization prior to initiation of the study. All participants were recruited by researchers at Nemours Children’s Health System; therefore, none of the other sites required IRB review. An alteration for the consent process to allow telephone consenting and waiver of documentation was approved. Participants were recruited through convenience sampling. Each site was provided information about the study to give to potential participants. Individuals in the ACRC network who had previously expressed interest in participation in future research studies were approached by telephone and asked to contact research staff at Nemours if they were interested in participating in the study. As a supplement to ensure racial/ethnic diversity, providers approached potential participants in clinic and asked them to contact research staff at Nemours if they were interested in participating in the study.

Nemours’ research staff then confirmed interest in engaging in an audio Web-ex interview and ensured potential participants met eligibility criteria. Parents of adolescents who were interested had the informed parental permission and assent form for adolescents e-mailed to them. Young adults had an informed consent e-mailed to them. The consent process included a telephone appointment to review the consent documents with the study staff and have questions answered prior to participation, with the adolescent present. Verbal parental permission and consent for the study was provided by caregivers and assent was provided by adolescents. Consent was also provided by young adults. After obtaining verbal consent and/or assent from the participant, demographic information about participants including gender, age, race, ethnicity, education level, marital status, employment, and living situation, was collected. Participants were then scheduled for their audio Web-ex interview and received $25 compensation for completion of the interview.

Semi-structured qualitative audio Web-ex interviews were conducted by a single researcher ER, a female research program manager who has completed her Masters of Public Health and is a trained qualitative interviewer with over seven years of experience. Adolescents and caregivers were interviewed individually. The interviewer had no prior relationship with participants and was independent from the clinical care team. Only the interviewer and participant were present during the audio Web-ex interviews. All audio Web-ex interviews were audio recorded and transcribed by a professional medical transcriptionist. Transcripts were deidentified prior to being analyzed.

Interview guide

The interview guide was developed with expert guidance from study authors, including a clinical pharmacist, pulmonologist, and a clinical psychologist. Questions were modified throughout the interview process using an iterative process. Open-ended questions included topics such as participant’s medication routines, factors influencing their medication adherence, potential strategies and recommendations for interventions to support adherence for AYAs with asthma (Supplement 1).

Analysis

A qualitative descriptive design was used with a thematic analysis approach to analyze the data. Transcripts were analyzed using NVivo12.0 (QSR International Pty Ltd, Doncaster, Australia) software. Two investigators (ME and CA) read all transcripts and inductively developed a codebook. The codebook is included as Supplement 2. Following the codebook development, investigator CA performed line by line coding of the transcripts, and iteratively updated the codebook as needed.²⁴ Two independent investigators (SZ and ML) then used the created codebook to double code each interview. Threats to validity and reliability were addressed by triangulation among investigators by ensuring consensus among coders in two ways. Investigators met with the principal investigator to resolve discrepancies in coding and discuss iterative changes to the codebook. Coding comparison was calculated using Cohen Kappa’s coefficient and by calculating a percent agreement. During analysis of the transcripts, it was determined that thematic saturation occurred as no new themes emerged for at least three interviews. Transcripts were not returned to the participants for comment or correction.

Codes were then organized into themes using thematic analysis and content analysis to create conceptual themes related to transitional challenges and strategies to improve asthma medication adherence.²⁵ Participants did not provide feedback on study findings.

The Consolidated Criteria for reporting qualitative research (COREQ) checklist was used.²⁶

Results

Twenty-three caregiver and young adult participants contacted the research staff at Nemours with interest in participating in the study and 20 were consented (10 caregivers/adolescents and 10 young adults). Fourteen of those who were consented completed interviews (7 caregivers and adolescent pairs conducted separately and 7 young adults), along with 7 adolescents who provided assent. Reasons for noncompletion are presented in Supplement 3.

Demographic characteristics are included in Table 1. Adolescents ranged in age from 14 to 17 years (median of 15.5), all were in high school, and 3 (43%) were male. Four (57%) adolescents were black, 2 (29%) were white, and 1 (14%) was Hispanic. Young adults ranged in age from 18 to 27 (median of 19) and 2 were male. Four (57%) young adults were white, 1 (14%) was black, 1 (14%) was Hispanic, and 1 (14%) was Asian. Five (71%) young adults had completed some college, 1 (14%) had earned a bachelor’s degree, and 1 (14%) had finished high school. One (14%) young adult was married and 6 (86%) were never married. Caregivers ranged from 36 to 54 and all were female. Two (29%) caregivers completed some college, 2 (29%) had a bachelor’s degree, 2 (29%) had an associate degree, and 1 (14%) had a graduate degree. Five (71%) caregivers were married, 1 (14%) was widowed, and 1 (14%) was never married. One adolescent was prescribed a rescue inhaler as needed, but all other adolescents and young adult participants were prescribed a daily controller for asthma, indicating persistent asthma. The mean length of time of the interviews was 40.5 min, standard deviation 12.9 min.

Table 1.

Characteristics of participants.

Characteristics	Adolescents, N:7 (%)	Caregivers, N: 7 (%)	Adults, N: 7 (%)
Age (median)	15.5	44	19
Gender
Male	3 (43)	0 (0)	2 (29)
Race
Black	4 (57)	4 (57)	1 (14)
Hispanic	1 (14)	1 (14)	1 (14)
White	2 (29)	2 (0.3)	4 (57)
Asian	0 (0)	0 (0)	1 (14)
Marital Status
Married	0 (0)	5 (0.7)	1 (14)
Never Married	7 (100)	1 (14)	6 (86)
Widowed	0 (0)	1 (14)	0 (0)
Highest level of education
High School	7 (100)	0 (0)	1 (14)
Some college	0 (0)	2 (29)	5 (71)
Bachelor degree	0 (0)	2 (29)	1 (14)
Associate degree	0 (0)	2 (29)	0 (0)
Graduate degree	0 (0)	1 (14)	0 (0)
Employment status
Employed, full time	0 (0)	4 (57)	1 (14)
Employed, part time	0 (0)	1 (14)	3(43)
Not employed/Full time student	7 (100)	2 (29)	3(43)
Asthma Medications
Albuterol PRN only	1 (14)	NA	0 (0)
Daily ICS	4 (57)	NA	1 (14)
Daily ICS/LABA	2 (29)	NA	6 (86)

An inter-rater reliability analysis was performed for coding. Cohen’s kappa coefficient was calculated among coders. The resulting kappa indicated substantial agreement κ = 0.85. Percentage of agreement was calculated to be 99.7%.

Challenges to Adherence during Transition from Adolescence to Adulthood

Participants described a number of challenges affecting adherence to asthma medications during the transition from adolescence to young adulthood. Within the socio-ecological framework, themes were identified related to individual factors, including responsibility for asthma health and understanding of asthma condition and severity; themes related to interpersonal factors, including embarrassment about asthma medication use, and a theme related to community factors, life demands altering medication adherence (Table 2).

Table 2.

Challenges during the transition from childhood to adulthood.

Theme	Sample Quotes, Adolescent/Caregivers	Sample Quotes, Young Adults
Individual factor: taking responsibility for asthma self-management	“Maybe when I’m 16 I’ll be better. Or maybe when I’m 21.1 could either be better and not need to take as many medicines as I do now. Or I may be more mature and just be able to take the medicines every day…” – 14 yo F “When [adolescents] are younger… we have to ask them all the time, will you do this, did you do this, did you do that?… – 54 yo F	“I guess I grew up. I would be more responsible in the things that are in my life and I know that having to take my medicine for my life…” – 18 yo M “[Moving away from home] makes you more responsible or alert.” – 19 yo F
Individual factor: understanding of asthma condition and severity	“I will definitely take my medicine if I can feel my asthma is getting worse or … I am having a hard day on my lungs. I will make sure that I am taking my rescue inhaler when I plan to do things and I will make sure that I am taking my Flovent even if I am busy because I do not want to feel bad.” –16 yo F “She actually will go ahead and take it but she knows how important it is and knows the consequences of doing this.” – 44 yo F “…but he has gotten better over the last year about that realizing that, I have got to take this or I am going to get really sick…” – 54 yo F	“[My doctor was] talking about my lungs and my lung function and they said it was getting poorer… I wasn’ really taking [my medication] everyday…. So, after one day when I saw how poor my lung function was, it kind of hit me in the head, ‘oh I need to take these pills.’” 18 yo M “I continually take my medicine just because I have so many health issues…plenty of people in my family die from not taking the medications or taking care of themselves, [which] just pushes me to keep doing what I am supposed to do.” –18 yo F “…because I am becoming a doctor and I am learning about these things… so if anything I am better at taking my meds now as a medical student and future doctor than I was before.” – 27 yo F
Interpersonal factor: embarrassment about asthma medication use	“If you do have to [take medication] in public or in event or something like that, it can be a bit awkward at first, because it is just not something that people typically see…” – 17 yo M “He is a leader in school. He is a leader in the church community, …and sometimes he gets embarrassed…” – 54 yo F “He does not want to do it in front of [his friends], if he spends a night at a friend’s house …” - 36 yo F	“To use a spacer in front of people and tha’s awkward and embarrassing, and honestly if I have to do that even at 27 years old… I probably feel weird about it…” – 27 yo F “When I was younger, I was more worried about how the other kids would either accept [my asthma] or what people would think about me, but now that I am older … most people understand that it is an important thing…” – 19 yo M “Before middle school… kids didn’ really accept it… when people saw me take my inhaler, ’Oh she has got an inhaler, that makes her weak.’” – 18 yo F
Community factor: life demands affecting medication adherence	“There are days when unfortunately our schedule… is horrific so there are occasional mess-ups… we tried to have their medications set up in certain places now so it becomes…part of your daily routine.” – 49 yo F “Just being busy… so if [teens] are not watching TV or doing your homework, you are on your phone… so you are not really thinking about your medication period until it is too late or I am yelling…” – 44 yo F “They are teenagers and they want to stay up and play games, video games all night sometimes.” –36 yo F	“ I will forget trying to get to work on [time]… Sometimes if I don’ work in the morning, I will be able to remind myself to take [my medication] but if I am closing [work] and I just had a long day, I know I’ll forget to take it because I am so tired.” –18 yo M “When I was in high school, I played in the band and I was on different clubs…there were some days that I would take my medicine late… Right now if I plan to go somewhere, I try to bring it with me and then just take it.” – 18 yo F

Individual factor: taking responsibility for asthma self-management

Adolescents, caregivers and young adults emphasized the importance of taking responsibility for one’s asthma in maintaining adherence to asthma medications. As a caregiver stated, “We are trying to make [our son] have more ownership… we do not remind him as much to take his inhalers. When he goes off on his own, I am not going to be there, so he needs to start to understand and know what to ask…and what to do and how to handle and manage himself.” Several young adults agreed that they had less responsibility regarding their asthma management when they were younger. As a young adult said, “It took a lot for [me] to get here…when I was a lot younger, it was difficult for me to get into my own, it was kind of like a responsibility thing and realizing that it [asthma medication adherence] was important.”

Individual factor: understanding asthma condition and severity

Understanding asthma condition and severity was described as a key component of asthma medication adherence, which occurs as adolescents gain autonomy and decrease their dependence on their caregivers. Adolescents, caregivers and adults reported AYAs needed to learn about the course of disease in asthma and the role medication plays in asthma control to take responsibility for their disease. As a caregiver said, “You have to teach adolescents to number one be aware of what the disease is…what it means to have it, you have to teach them the importance of why they have to take the medicine and consequences of not…and we have to teach them to start taking accountability for the disease.”

Interpersonal factor: embarrassment about asthma medication use

Given that adolescents desire social acceptance and to fit in with their peers, adolescents and young adults described embarrassment about asthma medication use as another barrier to asthma medication adherence. As one adolescent stated, “[Taking my asthma medication] was a lot easier in elementary school because I didn’t really care about what other people thought, but as I got older into like middle and high school, I started to care a little bit, and that made it harder.” Several young adults described greater comfort with inhaler use in front of others as they aged suggesting that embarrassment may be unique to adolescents.

Community factor: life demands affecting medication adherence

Finally, life demands during the adolescent and young adult years were believed to make adherence to asthma medications more challenging for AYAs. As one caregiver said, “I think it is the craziness of their lifestyles…they got so many sports and so many extracurricular activities and sometimes they just do not realize it in their brains [to take medications].” An adolescent stated, “Just having a lot of extracurriculars has made [medication adherence] difficult, because there are only so many things I can keep track of.”

Systemic Issues Affecting Adherence to Asthma Medications

Several participants reported that systemic barriers made adherence to asthma medications more difficult for both adolescents and young adults. Within the socio-ecological framework, these barriers encompassed societal themes such as the cost of medications, insurance formulary challenges and difficulties obtaining refills due to the refill process, and community themes such as inconvenient pharmacy hours and school-related factors (Table 3).

Table 3.

Systems issues affecting adherence to asthma medications.

Theme	Sample Quotes, Participant
Society factor: cost of medications	“It usually runs pretty smoothly, but there are incidences where they [insurance] do not cover the cost.” - 19 yo F “She has been on the Merck assistance program for years because her medication was so expensive.” – 44 yo F
Society factor: challenges with insurance	“We recently fixed insurances and my new insurance did not realize that we were on medications…as far as asthma, so they had to be called and approval had to be obtained.” – 18 yo F “We had an issue with the kind of…insurance changes or not and then overall its [the medication] not under your plan…” – 44yo F
Society factor: difficulties obtaining refills	“I have had times where the refill will run out and I had no idea and my doctor is unavailable…my doctor will be in other countries and they will have an issue getting hold of her.” – 19 yo F “…some of the prescriptions from the time the doctor gives them, they expire…and so when we call in the prescription, it is expired…so you have to call and get a new refill.” – 54 yo F
Community factor: inconvenient pharmacy hours	“I get off at 5 o’clock and the drug store closed at 5…” – 18 yo F “Getting to the pharmacy before they close…I work from 7 AM to 7 PM, so by the time I actually leave work, it is almost 8 PM and the pharmacy closes right at 9….” – 28 yo F
Community factor: school factors	“Our high school didn’t have a registered nurse, if you need somebody with a Band-Aid, you could find one of those, but if you need anything else, you might as well just call 911 yourself.” – 18yo F “Some nurses work in elementary schools for three days a week…[Adolescents] are [there] 90 percent of the time. She spends hours at school, so they are doing physical activity there and there is a lot of time that [asthma exacerbations are] going to happen there.” – 44yo F

Societal factor: cost of medications

Caregivers and young adults described the high cost of asthma inhalers, which were sometimes not always covered by insurance, as being prohibitive to asthma medication use. As one young adult said, “Affordability [is an issue with taking daily asthma medication]. The purple diskus that I use for my maintenance inhaler is $150…it lasts a month, so that is $150 that I am spending each month.” Caregivers described participation in pharmaceutical assistance programs to help decrease the total cost of medications. Adolescents did not mention cost as an issue that impacted adherence.

Societal factor: challenges with insurance

Participants explained the need to change asthma medications due to changes in insurance formulary, leading to nonadherence and instances without medication. As a young adult stated, “I have had times where they have stopped covering something…so I ran out of that [medication] temporarily.” An adolescent described, “I used to take Advair, and we had to go to Flovent because my insurance was not happy about paying for it.” Others described changing insurance plans and needing to call the new insurance company to ensure they were aware of the participant’s asthma diagnosis for appropriate medication coverage.

Societal factor: difficulty obtaining medication refills

Systems issues altering the ability of participants to obtain asthma medications were also described as barriers to adherence. Participants reported difficulty getting to the pharmacy due to inconvenient pharmacy hours and had difficulty obtaining refill authorizations from insurance companies and physicians. Obtaining refills is a multistep process which involves interactions between the insurance company, physician, pharmacy and patient that can be fraught with communication problems. As one caregiver described, “Once in a while, I have trouble getting the pediatrician to call back…but then I call the pediatrician and the pediatrician states that we really never got anything from them [the pharmacy] ” Obtaining refills was primarily noted to be a barrier to adherence by caregivers and young adults, whereas adolescents did not report having difficulty obtaining refills.

Community factor: school factors contributing to medication adherence difficulties

With adolescents spending a significant amount of their time in school, school related factors including administrative rules and lack of an onsite school nurse were highlighted as a unique barrier for adolescents. As one caregiver stated, “I had to scream and yell and be ready to call anyone…so I have had that conversation with three different schools in three different districts…[My daughter] needs to be able to hold [her inhaler] for every time she has an asthma attack.” Lack of an onsite school nurse also made asthma medication treatment challenging due to concerns about receiving necessary treatment within the context of an asthma exacerbation. Some adolescents described the need to “go to the nurse” to receive asthma medications.

Strategies to Improve Asthma Medication Adherence

A number of strategies to improve adherence to asthma medications for adolescents and young adults were described by participants. From a socio-ecological perspective, this included individual themes such as incorporating asthma medication administration into daily routines and using reminders such as phone alarms; interpersonal factors such as having others help remind individuals with asthma to take their medication; and an individual and societal theme, the ability to access inhalers in various locations (Table 4).

Table 4.

Strategies to assist adherence across the developmental spectrum.

Theme	Sample Quotes, Adolescent/Caregiver	Sample Quotes, Adult
Individual and society factor: access to inhalers at home, work, and school	“I might carry [my inhaler] in a bag or the school nurse would have it. I also have an inhaler somewhere at home.” – 17yo F “When he spends time in my mom’s house…he has the medications available at both houses and he is not carrying it around from one place to another, just to have prescribed one at each location…” – 36 yo F “One of the things… is asking her doctor for a prescription for two of her rescue inhalers that way she has one for at home and she always has one for her book bag or her purse that way she has a travel one.” – 49 yo F	“I can probably just buy a second one and leave it there, but insurance companies do not really like that.” – 27 yo F
Individual factor: incorporate medicine into daily routine	“At first it was more challenging to fit in taking it [medications] regularly just because I had to get new set of new things, but after I got used to it…” – 17 yo M “After I take my shower I used to just take my medicines and then go to sleep or when I wake up in the morning the first thing I do is take my medicine…” – 14 yo M	“I know if I had a specific time to take it [my medication] I can make this a daily thing in my life. Wake up, shower, take my medication like make that a daily thing.” –18 yo M “School is more routine for me throughout the semester…I also have some friends who have asthma and they do not live too apart from me and I will go down and see them in the morning sometimes and we will go to class together and if I have forgotten to take my medicine and I am watching them take theirs, then I will go back to my dorm and take my medicine.” – 19 yo M “… When I schedule my classes for that semester, so that I have 15 min in between every class so that gives me time to either go outside and take it out of my backpack and take my medications as needed or on a schedule ….”– 18 yoF
Interpersonal factor: others reminding individual to take medications	“[My family asks] me every morning and every night, did I take it [my medication], so they make sure that I am doing what I’m supposed to do.” – 14 yo M “Beside me nagging and putting it out which is now normal routine, she still will forget but daily reminder, “Did you take the medicine?” and everybody in the household so help her to remember it….” –44 yo F	“One of my friends, she is in the Air Force, she really texts me and tells me to take my medications or I am going to die, that is for sure…” – 28 yo F “[My mom] asks me, “Okay how you’ve been taking the Dulera?” and I saw yes. Sometimes she also checks how much dosage it has left in it and if she thinks I am not taking it enough, she reminds me.” – 18 yo M “If I am obviously not doing okay sometimes my coworkers…like you should probably take your inhaler or something right now…” – 19 yo M
Individual factor: reminders, primarily phone alarms	“I used an alarm on my phone…so that I could take it [my medication] every day the same time.” – 17 yo F “I have an alarm set just in case, I have a long day out there doing something and I got home really, just to make sure I do it.” – 14 yo M “He has an alert on his phone that used to help him to take you know remember to do it…” – 36 yo F	“I use my phone for my alarms…I put a little note inside of the alarm that says take medications.” – 28 yo F ”I guess making alarm specifically for taking medicine not just for waking up…on my phone because I am with my phone 90% of the day.” – 19 yo M

Individual and societal factor: Access to inhalers at home, work, and school

Adolescents, caregivers, and young adults explained the importance of having multiple inhalers in different locations, ensuring individuals with asthma have ready access to their medication. For adolescents, that included having inhalers at school and at the homes of caregivers. For young adults, having an inhaler at work was important. As one young adult stated, “I have an extra inhaler at work and have everything that I may possibly need.”

Individual factor: incorporate medication into daily routine

Incorporating use of asthma medications into daily routines was described as a key measure to improving adherence by adolescents and young adults. Both groups described taking controller medications as part of their morning routine with showering and brushing their teeth. As one adolescent explained, “I have it planned in like it is a part of when you wake up in the morning, you brush your teeth, is part of my routine.” The adolescent who was using only a rescue inhaler as needed had previously required daily inhalers for asthma control. She noted that taking inhalers as needed when symptomatic was easier than remembering to take a daily controller, and that daily inhaler adherence required making inhaler use part of one’s routine.

Interpersonal factor: reminders from other people

Participants described the critical role that reminders play in promoting their asthma medication adherence. Adolescents and caregivers described parents and teachers as playing a central role in reminding adolescents to take their medications. As an adolescent said, “My mom will tell me that I’m supposed to take it so that I don’t get sick. My dad and sister help too.” As one caregiver stated, “When he is on a trip with one of them [his teachers], they pay attention and make sure to remind him to take his medication.” Young adults also credited friends and co-workers for reminding them to take medications.

Individual factor: reminders, primarily phone alarms

Both adolescents and young adults set phone alarms, or described visual reminders, that helped them remain compliant with asthma medications. As a young adult said, “I have been using alarms [to remind myself to take my medications] since middle school…Even my teacher would hear it… and know that I was going to get my medication.”

Discussion

In this qualitative study of adolescents and young adults with asthma and their caregivers, we use a socio-ecological context to describe adolescent-adulthood transitional challenges, systems issues contributing to medication nonadherence, and discuss strategies reported by participants to improve asthma medication adherence. These challenges and strategies cover all aspects of the socio-ecological framework, including individual, interpersonal, community, and society factors. This study provides a unique view of the factors affecting adherence for adolescents and young adults from the patient and caregiver perspective. Young adults reflected on how their attitudes and actions changed during this transitional period and caregivers discussed how their child’s actions and attitudes shifted during this period. All participants highlighted the change in beliefs and medication adherence during this time period and the role of the social environment on behaviors.

Understanding the challenges affecting the transition from adolescent to early adulthood care is particularly important in chronic conditions such as asthma. This transition involves planning and integrating into adult care, while ensuring adolescents are independently able to manage their own healthcare. Although the transition in asthma has been understudied, the European Academy of Allergy and Clinical Immunology recently released guidelines on the transition of care for adolescents and young adults with asthma and allergies.²⁷ Notably, transitional challenges extend beyond the physical location that a patient receives care and extends to the life transitions and developmental milestones experienced from adolescence to young adulthood, i.e. graduating from high school and starting college or a job.

Prior research has focused on challenges to adherence in adolescent populations, with nonadherence to treatment regimens previously reported to be prevalent among adolescents.²⁸ Many of the challenges to asthma medication adherence in adolescents that were identified in this study, including a lack of understanding of asthma condition and severity and embarrassment about medication use,^15,16 were concordant with prior studies. Notably, critical stages of development occur during this period as adolescents attempt to develop their independence and autonomy, become emotionally separate from their parents, develop a network of peer relationships, and assume more responsibility.^20,29 Our findings were unique compared to other studies as many participants specifically addressed the changes that occur with adherence during development, with young adults noting increased responsibility about asthma self-management that develops with older age, and caregivers and adolescents reflecting on changes they anticipate will occur in future years. Participants noted that as AYAs began to fully understand their asthma and severity of disease, they were better able to understand the importance of taking medications.

Participants in this study articulated individual and interpersonal recommendations for improving asthma medication management. These management strategies were universal among adolescents and young adults, but had slight differences (i.e. adolescents relied on family and teachers to remind them to take medications whereas young adults relied on friends and coworkers for reminders). Adolescents need developmentally appropriate and accessible ways to develop the skills, knowledge, and confidence to independently manage their asthma. Furthermore, there is a need for parents, adolescents, and clinicians to talk about shared responsibility for adherence to asthma medications, highlighting not only the act of taking medications, but how medications help to improve asthma symptoms. Future areas of research need to specifically address interventions that target the transitional period from adolescence to young adulthood. Strategies for such interventions may include access to inhalers in multiple locations, reminders and education from family and friends, as well as technology and mobile application use, which has been shown to be particularly relevant to this age group.^30,31

Additionally, our results show that community and systems related challenges including cost of medications, availability of medications on insurance formularies, difficulties obtaining refills, and school related factors, are also a necessary component of improving asthma medication adherence. For example, school level policies and interventions may improve access to medications for adolescents with asthma. Legislation in some states allows for stocking of rescue asthma medication, such as albuterol, in schools as well as administration of emergency medication.³² All fifty states have also enacted laws allowing students to self-carry albuterol inhalers.³³ School-based, directly observed therapy (DOT) is another effective intervention at the school level that has been shown to improve medication adherence and asthma symptoms, as well as, adherence directed telemedicine programs.^34,35 Implementation of such programs may help to improve asthma medication adherence among adolescents and typically includes access to inhalers in both the school and home setting.

There were limitations to the study. This study included a small number of participants but was unique for including adolescent and caregiver pairs in addition to young adults to capture the spectrum of challenges across the developmental continuum. Potential sampling bias may exist, as participants who were enrolled in the study initially included those from a clinical trials network with additional participants recruited from specialty clinics at the included institutions. Participants were asked to directly reach out to the study team, thus participants in this study may have had more motivation regarding asthma medication adherence. All participants within the study had insurance. Finally, caregivers of adolescents were all noted to be female with above a high school level of education. The sample population may limit generalizability of these findings to other populations. Of note, this was a cross sectional study, thus we were unable to interview the same participant at different points in time to understand an individual’s perspective over time. Finally, we did not measure participant adherence during this study and relied on self-reported adherence barriers and facilitators from participants. We also did not measure asthma control of participants.

Adolescents and young adults face a number of challenges with asthma medication adherence as they develop and transition from pediatric to adult care, including systems-related challenges. Prior interventions to improve asthma medication adherence have focused on the individual patient, including focusing on psychological elements of adherence, electronic health interventions, and educational interventions.³¹ However, these interventions have not integrated an individual’s broader socioecological framework, with its community and societal factors, that also contribute to medication adherence. Interventions for medication adherence for this group should focus on developmentally appropriate strategies in addition to addressing cost and accessibility of asthma medications.