TREATING AND COMMUNICATING 

ABOUT ASTHMA: 

Insights from Patients, Caregivers, 

and Health Care Providers

nhlbi.nih.gov/BreatheBetter

 
WHAT IS ASTHMA?

1

nhlbi.nih.gov/BreatheBetter COPD Learn More Breathe Better® is a trademark of HHS

Background

Understanding how asthma treatment 

decisions are made, how practice guidelines 

are used, and the communication needs 

of asthma patients, caregivers, and health 

care providers is critical to ensuring asthma 

patients receive the highest quality care. In 

fall 2019, the National Heart, Lung, and Blood 

Institute’s (NHLBI’s) Learn More Breathe 

BetterSM program commissioned qualitative 

research on these topics with adult asthma 

patients, caregivers of children with asthma 

who are ages 12 years and younger, and health 

care providers who treat asthma. 

Learn More Breathe Better will use the 

results to inform development of asthma 

education materials.

Ten focus groups were conducted with groups 

who traditionally have high rates of asthma, 

including English- and Spanish-speaking 

lower- to lower-middle income adult patients 

and caregivers. There were few differences 

in the perspectives of adults with asthma 

versus caregivers and English versus 

Spanish speakers. 

In-depth interviews were conducted with 

11 board-certified physicians, physician 

assistants and nurse practitioners in family 

practice and pediatrics, and an allergist/

immunologist. One-fourth or more of each 

provider’s patient population was uninsured 

or publicly insured. Among about one-fourth 

of the providers, at least one-fourth of their 

patients were Spanish speakers. 

Asthma Facts1

1

All data from the Centers for Disease Control and Prevention, Asthma 

Surveillance Data https://www.cdc.gov/asthma/asthmadata.htm.

Accessed March 4, 2020.

1 in 13 Americans has asthma

19 million adults

6 million children

Increasing since 

early 1980s in all 

age, sex, and racial groups

Highest prevalence in

lowest income households

Most prevalent

among black and Puerto Rican 

children and adults

1⁄2 of people 

with asthma had an 

asthma attack in past year
WHAT IS ASTHMA?

2

nhlbi.nih.gov/BreatheBetter COPD Learn More Breathe Better® is a trademark of HHS

Treatment Goals 

Far and away the most important goal of patients and caregivers was getting symptom relief so that 

patients can be more physically active. Caregivers also wanted fewer hospital visits, and Spanishspeaking caregivers in particular sought better control of nighttime symptoms.

“She can’t do normal activities 

like her siblings. She always has 

to be near her medication.”

—Spanish-speaking mother, 

daughter age 9

“As I tell everyone, I only run for 

my life because if I run any other 

time, I can’t breathe.” 

—English-speaking male patient

“I’m not able to improve my 

quality of life [exercise, go 

outside] if I can’t get up and do 

something.”—English-speaking 

female patient
WHAT IS ASTHMA?

3

nhlbi.nih.gov/BreatheBetter COPD Learn More Breathe Better® is a trademark of HHS

Making Treatment Decisions

Insurance coverage affected caregivers’, patients’, and health care providers’ decisions about 

treatment. Most patients and caregivers would forego uncovered treatment, though caregivers were 

more willing than patients to pay for uncovered medications. Other factors that may affect decisionmaking about asthma treatment include safety, side effects, benefits, success rates, and asthma 

severity. A few adult patients were concerned about developing a drug dependency or addiction 

(especially to pills). Patients with comorbidities also were concerned about drug interactions and 

contraindications, especially for oral medications.

“So I think the biggest hurdle 

probably that we face is getting 

patients the medication that 

they need in terms of insurance 

companies.”—M.D., allergist 

“The percentage of kids it’s 

worked for. That’s a big thing 

for me...that was always the 

first thing I went to. What was 

the pool, the testing pool?”

—English-speaking mother, 

sons ages 4 & 9

“I would rather use 

whatever is more 

affordable as long as 

[insurance] covers the 

treatments.”—Spanishspeaking male patient

Health care providers said that poor treatment adherence, particularly once symptoms are controlled, 

can be a problem. Other challenges they confront include patients and caregivers who have a poor 

understanding of asthma, medications, device technique, and allergen management. 

“Once [patients] feel that their asthma is 

well controlled, they automatically stop 

taking their inhaled corticosteroids...”

—M.D., pediatrician

“Most patients don’t 

know which medication 

does what and why 

they’re taking it.”

—M.D., allergist
WHAT IS ASTHMA?

4

nhlbi.nih.gov/BreatheBetter COPD Learn More Breathe Better® is a trademark of HHS

Inhaled Versus Oral Medications

Patients and caregivers discussed various aspects of taking asthma medications. They preferred 

inhaled medications over pills or liquids. They said inhaled medication is easier to take or administer, 

faster acting, and more effective (because it is delivered directly to where it is needed). 

“...the inhaler’s an instant relief 

so you know it’s working but 

I don’t know that the pills are 

working all of the time.” 

—English-speaking male patient

“My inhaler...it’s like an extension of 

my body. I’ve had it since I was five.” 

—English-speaking female patient

“...the inhaler is definitely the easiest route to go...he’s four. 

It’s hard for him to take pills, to swallow something ...and with 

liquid as well.” —English-speaking mother, son age 4

Number of Daily Medications

Patients and caregivers preferred one medication per day and viewed more than two to three as 

excessive. Caregivers were concerned with potential long-term effects of children taking more 

medications. They also mentioned the challenges of more frequent administration of medications 

at school. 

“Three right now, it seems like a lot just because she is 

still so young...she really hasn’t started developing yet 

so we don’t know how that’s going to play out in the 

future.” —English-speaking father, daughter age 5

“[Adding medication] 

is a big issue when kids 

get to school age and 

schools refuse to give 

medication...” 

—English-speaking 

mother, daughter age 8
WHAT IS ASTHMA?

5

nhlbi.nih.gov/BreatheBetter COPD Learn More Breathe Better® is a trademark of HHS

Scheduled Versus As Needed

Taking medication on a set schedule versus as needed received mixed reactions. A set schedule was 

seen as easier to adhere to and more effective, including for preventing exacerbations in patients 

with severe asthma. 

“I think the daily because of 

the routine...having a routine 

is what gets us through all the 

medications that we have to 

take on a daily basis.”

—English-speaking mother, 

son, ages 4 & 9

“...but I think when we’re 

having an asthma attack...it’s 

actually scarring our lungs, 

our airways...so if there’s 

something that’ll prevent that, 

that’s what I’d prefer.”

—English-speaking male patient

“I prefer a daily medication to prevent, sometimes 

the rescue inhaler isn’t enough. I’ve had to go in the 

ambulance with him and the rest of my kids.”

—Spanish-speaking mother, son age 8

“I like it better on a 

schedule because I know 

what time to take it...I 

know how long it’s going 

to last.”—English-speaking 

male patient

In contrast, others felt taking medication as needed offers flexibility and potentially reduces side 

effects and dependency. This option was more appealing to those with mild to moderate asthma and 

Spanish-speaking caregivers. 

“[For daily medication]...

maybe your body get[s] 

addicted to it, where if 

you quit taking it you’d 

have more problems.”

—English-speaking 

female patient

“[As needed] if it works. 

You hate [to] give your 

kids medication unless 

you have to.”—Englishspeaking father, son age 10

“I want to decide the 

time, life is hectic. I’m 

not home at the same 

time every day.”

—Spanish-speaking 

mother, son age 9
WHAT IS ASTHMA?

6

nhlbi.nih.gov/BreatheBetter COPD Learn More Breathe Better® is a trademark of HHS

Using One Inhaler to Treat Asthma 

and Prevent Attacks

Patients and caregivers generally were receptive to using the same inhaler to both treat asthma and 

prevent exacerbations. However, some questioned whether one inhaler could do both effectively.

“It would be ideal. It would save time 

and money and I would feel prepared 

to combat asthma.” 

—Spanish-speaking male patient

“I would have a lot of questions about 

how you’re going to prevent and treat the 

symptoms...if you’re treating the symptoms 

after an attack, then you didn’t prevent them.” 

—English-speaking mother, daughter age 8

Allergy Shots, Allergens, and 

Bronchial Thermoplasty 

Patients and caregivers also discussed other asthma treatment and management strategies, including 

allergy shots, reducing home allergens, and—for adult patients only—bronchial thermoplasty. 

(Biologics were not discussed). 

• Awareness of allergy immunotherapy (allergy shots) was low to moderate. Some said they would 

consider immunotherapy if it was shown to be effective. Others were skeptical, citing concerns 

about pain, inconvenience, and side effects. 

• Most of the caregivers and adult patients said they tried to reduce allergens in their homes. 

They used mattress and pillow covers, removed curtains and mold, controlled pests, and dusted 

and vacuumed often. They also reported keeping windows closed during pollen and wildfire 

season to reduce allergens and irritants. Some kept pets, but said they kept the pets outside 

more or vacuumed more frequently after an asthma diagnosis. Very few would stop inexpensive, 

easy allergen reduction efforts, even if those efforts were proven to be ineffective. Before they 

changed how they control allergens, they would want information on the cost and difficulty of 

those changes. 

• Most adult patients thought bronchial thermoplasty was too risky, citing concerns about 

anesthesia, multiple hospital visits, having their muscle tissue heated, and possible impact on 

other health conditions. They wanted more information on side effects, risks, complications, 

success rates, and how the procedure is done. Spanish-speaking adult patients were more 

receptive to the procedure than their English-speaking counterparts.
WHAT IS ASTHMA?

7

nhlbi.nih.gov/BreatheBetter COPD Learn More Breathe Better® is a trademark of HHS

Unique Challenges Facing 

Adolescents

Although we did not interview adolescents with asthma, their caregivers and health care providers 

described some of their common challenges.

DENIAL

Parents often think of 

asthma as a handicap. So, 

they don’t want to admit 

their child has asthma and 

therefore don’t want to start 

or stay on meds.

—M.D., pediatrics

EMBARRASSMENT 

OR SHAME

They see other kids around 

who don’t have the same 

issues they do; they don’t 

want to be different.

—P.A., family practice

I think he was more 

embarrassed for his 

teammates to know that he 

had it. 

—English-speaking mother, 

son age 12

LIMITED 

SELF-RELIANCE,

SCHOOL ISSUES

Getting teens to take 

ownership of their asthma 

care as they get older and 

have more autonomy. I tell 

them ‘It’s your issue, not 

your mom’s.’

—M.D., family practice

...there was a lot of red tape 

to go through just to make 

it so she could bring her 

inhaler to school and keep 

it in her backpack...They’re 

very strict about medications 

only being in the office. 

—English-speaking mother, 

daughter age 13

SMOKING, 

VAPING, 

MARIJUANA 

USE

I have quite a few 

adolescents who smoke... 

though the news is 

helping a lot with this, 

the people who vape, the 

hookah smokers, and the 

weed smokers.

—N.P., pediatrics

nhlbi.nih.gov/BreatheBetter COPD Learn More Breathe Better® is a trademark of HHS
WHAT IS ASTHMA?

8

nhlbi.nih.gov/BreatheBetter COPD Learn More Breathe Better® is a trademark of HHS

Using Clinical Practice Guidelines

Most health care providers said they referred as needed to clinical practice guidelines, which they 

found online. Few had guidelines integrated into their electronic health record system. When 

evaluating whether to apply a guideline to a patient who was outside of the guideline’s age range 

or severity, providers said they considered the patient’s history, insurance coverage, and likely 

compliance; treatment costs; and their prior experience using the treatment and its outcomes. 

Clinicians liked algorithms and decision-support tools, including the stepwise 

approach from the National Asthma Education and Prevention Program’s 

Expert Panel Report 3: Guidelines on the Diagnosis and Management of 

Asthma (EPR-3). However, some thought EPR-3’s stepwise approach 

was too complex. In the EPR-3 Asthma Care Quick Reference, clinicians 

said the most useful sections were the initial and follow-up visit sections, 

with the dosage section the least useful. Reactions were mixed on 

the sections describing key clinical activities and how to respond to 

patients’ questions. 

Health care providers suggested the following content for the Asthma 

Care Quick Reference: advice on verifying asthma in patients presenting 

as diagnosed; guidance on how to monitor/adjust the height/weight 

information in the parameters section of the pulmonary function test 

as children grow; when to refer to a specialist or consider skin testing; 

how to sensitively raise the risk of oral thrush; strategies for addressing 

patient adherence; and a flowchart or form providers can use to teach patients how 

to monitor their asthma, including questions to help assess what’s working, what’s not 

working, and what each medication does.

9 patient’s history

9 insurance 

coverage

9 likely patient 

compliance

9 treatment costs

9 prior experience
WHAT IS ASTHMA?

9

nhlbi.nih.gov/BreatheBetter COPD Learn More Breathe Better® is a trademark of HHS

Communication Sources and Needs2

PATIENTS AND CAREGIVERS

Their most common and preferred information sources included the internet 

(particularly Google and WebMD), a physician (most trustworthy among 

caregivers), a pharmacist, and family members who work in health care.

9 Many patients and caregivers wanted information about a cure and how 

to prevent asthma.

9 Patients wanted more information on medication safety, efficacy, and 

dosing frequency.

9 Caregivers wanted help understanding the disease; what the different 

classes of medications do; and guidance on device techniques, allergen 

management, and dosing.

Most patients and caregivers preferred web-based materials (apps, videos, 

websites), though a few preferred print materials to post at home. Some 

Spanish-speaking patients liked text messages.

HEALTH CARE PROVIDERS

Health care providers preferred receiving updates on practice guidelines 

in emails from professional associations and credentialing organizations. 

Preferred sources for asthma information included websites such as 

UpToDate, AAP SmartBrief, NHLBI, WebMD, and Mayo Clinic, or apps such 

as Lexicomp, AAP, PDR, and Medscape.

For patients and caregivers, health care providers wanted handouts and 

user-friendly websites on: 

9 Symptom recognition

9 Functions of classes of medications

9 Asthma as a chronic, not acute condition

9 Guidance for teens on troubleshooting their asthma management

For themselves, they wanted information on: 

9 When to use anticholinergics and biologics

9 When to refer for skin testing

9 Decision supports, like EPR-3 stepwise approach 

2Mention of brand names does not imply endorsement. 
WHAT IS ASTHMA?

10

nhlbi.nih.gov/BreatheBetter COPD Learn More Breathe Better® is a trademark of HHS

METHOD

Qualitative research was conducted in fall 2019. Virtual data collection 

methods (i.e., telephone and online platforms) were used to conduct 10 

online focus groups with asthma patients and caregivers, and 11 in-depth 

interviews with clinicians who treat patients with asthma. Analysis used a 

notes- and transcript-based process. 

Focus group participants were English and Spanish-speaking, lower- to 

lower-middle income (<$50k annual household income) adults with 

asthma (n=27) and adult caregivers of children with asthma (n=26). 

Interviews and focus groups were 75 minutes or less to minimize burden 

and facilitate engagement. Health care providers were a mix of boardcertified physicians, physician assistants and nurse practitioners in family 

practice (n=6) and pediatrics (n=4), with one allergist/immunologist. All 

had patient populations with one-fourth or more uninsured or publicly 

insured. In addition, about one-fourth had a patient load of at least onefourth Spanish speakers. 

Qualitative research techniques permit flexible exploration of topics and 

thus provide insights into participants’ reactions and ideas that would 

be unattainable with structured quantitative research. However, findings 

are not statistically projectable to some larger group due to small sample 

sizes and purposeful sampling methods.