Suboptimal Control of Asthma Among Diverse Patients: A US Mixed Methods Focus Group Study

Figures & data

Table 1 Sociodemographic and Clinical Characteristics of Participants

Characteristic	Overall (N=74)	Caregivers of Children with Asthma (N=35)	Adults with Asthma (N=34)	Adults with Dual Diagnosis of Asthma and COPD (N=5)
Age of participant (years), mean (SD)^a	42.1 (13.3)	39.4 (6.9)	40.5 (13.4)	71.2 (7.2)
Age of child (years), mean (SD)	10.9 (3.7)	10.9 (3.7)	N/A	N/A
Sex of adult participant, n (%)
Female	58 (78)	29 (83)	27 (79)	2 (40)
Sex of child, n (%)
Female^b	18 (55)	18 (55)	NA	NA
Employment status, n (%)^a
Employed, full-time	38 (52)	18 (53)	19 (56)	1 (20)
Employed, part-time	11 (15)	7 (21)	3 (9)	1 (20)
Homemaker	6 (8)	3 (9)	3 (9)	0 (0)
Student	2 (3)	0 (0)	2 (6)	0 (0)
Unemployed	5 (7)	2 (6)	3 (9)	0 (0)
Retired	6 (8)	0 (0)	3 (9)	3 (60)
Disabled	3 (4)	2 (6)	1 (3)	0 (0)
Other	2 (3)	2 (6)	0 (0)	0 (0)
Education level, n (%)^a
Up to secondary/high school	19 (26)	10 (29)	8 (24)	1 (20)
Technical/vocational degree or some college	21 (28)	10 (30)	10 (29)	1 (20)
College/university degree or higher	32 (44)	13 (28)	16 (47)	3 (60)
Other	1 (1)	1 (3)	0 (0)	0 (0)
Ethnicity, n (%)^a
Hispanic or Latino	30 (41)	15 (44)	15 (44)	0 (0)
Not Hispanic or Latino	43 (59)	19 (56)	19 (56)	5 (100)
Race, n (%)
Black or African American	22 (30)	11 (31)	10 (29)	1 (20)
White	35 (47)	14 (40)	17 (50)	4 (80)
Other	19 (23)	11 (29)	8 (21)	0 (0)
Health insurance for adult, n (%)
Employer-provided insurance	26 (35)	11 (31)	15 (44)	0 (0)
Medicaid	36 (49)	22 (63)	13 (38)	1 (20)
Medicare	10 (14)	1 (3)	4 (12)	5 (100)
Other	8 (10)	3 (9)	4 (12)	1 (20)
None	2 (3)	0 (0)	2 (6)	0 (0)
Health insurance for child, n (%)
Employer-provided	10 (14)	10 (29)	NA	NA
Medicaid	23 (31)	23 (66)	NA	NA
Medicare	1 (1)	1 (3)	NA	NA
Other	2 (3)	2 (6)	NA	NA
Asthma severity, n (%)^b,c
Mild	30 (42)	15 (45)	13 (38)	2 (40)
Moderate to severe	42 (58)	18 (55)	21 (62)	3 (60)

Notes: ^aN=73. ^bN=72. ^cSeverity was defined as mild for GINA steps 1–2/NAEPP steps 1–2 and moderate-to-severe for GINA steps 3–5/NAEPP steps 3–6.

Abbreviations: COPD, chronic obstructive pulmonary disease; NA, not applicable; SD, standard deviation.

Figure 1 Use of medications to treat asthma symptoms and exacerbations.

Table 2 Patient-Reported Outcomes

Measure	Overall (N=72) ^a	Mild Asthma (N=30)	Moderate-to-Severe Asthma (N=42)	P-value (Mild vs Moderate to Severe)
ACT or ACT-CR score, mean (SD) ^b	16.5 (5.2)	17.7 (4.9)	15.5 (5.4)	0.081^e
ACT classification^b, n (%)
Well controlled	20 (28)	10 (33)	10 (24)	0.232^f
Not well controlled	19 (27)	10 (33)	9 (22)
Very poorly controlled	32 (45)	10 (33)	22 (54)
AIRQ score, mean (SD)^c	5.3 (3.3)	4.6 (3.3)	5.8 (3.3)	0.323^e
AIRQ classification, n (%)^c
Well controlled	6 (18)	2 (15)	4 (20)	0.635^f
Not well controlled	7 (21)	4 (31)	3 (15)
Very poorly controlled	20 (61)	7 (54)	13 (65)
AAAQ
Medication plan, n (%)
Barrier absent	40 (56)	15 (50)	25 (61)	0.497^f
Barrier present	31 (44)	15 (50)	16 (39)
Barriers to treatment
Forgets, n (%)	26 (37)	13 (43)	13 (32)	0.450^f
Need, n (%)	31 (44)	22 (73)	9 (22)	< 0.001^f
Side effects, n (%)	29 (41)	7 (23)	22 (54)	0.020^f
Cost, n (%)	21 (30)	9 (30)	12 (29)	> 0.999^f
TSQM scores, mean (SD)^d
Effectiveness	61.5 (20.1)	61.9 (17.6)	61.3 (21.9)	0.937^e
Convenience	70.7 (17.7)	71.1 (20.2)	70.4 (16.4)	0.906^e
Global satisfaction	68.5 (21.0)	73.3 (20.5)	65.5 (21.2)	0.259 ^e

Notes: ^aAsthma severity was unavailable for two participants. ^bN = 71. ^cN=33. ^dN=39. ^eWelch t-test of sample means. ^fChi-squared test of sample proportions.

Abbreviation: SD, standard deviation.

Table 3 Sample Quotes for Theme 1: Asthma Symptom Control and Monitoring are Often Inadequate

Subtheme	Quotes
Variable frequency of rescue medication use	Caregiver: “She takes the Ventolin twice a day. Right now, she’s at three times a day. Sometimes it’s more”.
	Adult with asthma: “I get desperate and I will take five or six puffs, and then I will still feel out of breath when I walk upstairs or walk so many feet”.
Frequent OCS use needed to control symptoms	Adult with asthma: “I am steroid dependent, every day”.
	Adult with asthma: “I used it, prednisone three times last month because the treatment I was taking, I felt like it wasn’t helping me”.
	Caregiver: “When it’s bad, [my child uses OCS] every few months…during the winter when she is sick and it just won’t go away”.
	Caregiver: “ My son is on [OCS] six/seven times a year”.
Asthma monitoring is insufficient to control symptoms	Caregiver “His problem is at school, I don’t think the nurses have a good grip of asthma because they will call me…. At home I feel like we’ve got [his asthma] under control, it’s when other people have him, that is when [the problem] starts….”.

Abbreviation: OCS, oral corticosteroids.

Table 4 Sample Quotes for Theme 2: Treatments are Often Used Incorrectly

Subtheme	Quotes
Using someone else’s rescue treatment	Adult with asthma: “I was at a party when I was in college and started having symptoms, it was pretty bad. I didn’t have mine, so my friend let me use hers”.
	Caregiver: “[My child used] mine, because we are both on the same thing. Hers empty take mine, pump yourself”.
Frequency of taking maintenance medication not as prescribed	Adult with asthma: “Sometimes you start feeling better…and you think everything is alright, so you stop using [the maintenance medication]”.
	Adult with asthma: “I will be fudging sometimes…because I need to feel what I need to feel right then and there, so sometimes I don’t take what they say on that box…”.
	Caregiver: “[My child’s] symptoms are so mild that I don’t like to give him a lot of medication. Sometimes I just pull back and see how he does”. Caregiver: “[His asthma] doesn’t really affect him, so I don’t use the medication every day as doctors prescribed”.
	Adult with asthma: “I have taken [the maintenance medication] a little less than prescribed and then I don’t take the albuterol daily as I’m supposed to”.
Forgetting to take maintenance medication	Adult with asthma: “I will take it in the morning, that’s not a problem, but I work so hard at work that when I get home I just want to pass out and I just forget sometimes”.
	Caregiver [responding to a question about whether their child ever forgets take their maintenance medication]: “The morning [is] the hardest because they are rushing out the door”.
Take more maintenance medication than prescribed	Adult with a dual diagnosis of asthma and COPD: “I follow [maintenance routine] and take more as needed”.
Using maintenance medication as rescue medication	Adult with asthma: “I have like taken my [maintenance medication] …during an asthma attack if my [rescue medication] is not helping…I mean when you can’t breathe you get desperate, so you start taking whatever”.
	Adult with asthma [responding to the question about whether they ever took maintenance medication for rescue]: “The controller medication does more than what the albuterol could do for you, so I felt amazing”.

Abbreviation: COPD, chronic obstructive pulmonary disease.

Table 5 Sample Quotes for Theme 3: Communication Between Health Care Professionals and Patients or Caregivers is Often Ineffective

Subtheme	Quotes
Do not have an asthma action plan	Adult with asthma [when asked about their action plan:: “It’s not like written down”.
Have an asthma action plan but do not follow it or following it irregularly	Adult with asthma [when asked whether their doctor has developed an asthma action plan]: “They have but I don’t really use it to be honest”. Adult with asthma: “It’s engrained in me to know what to do, when, I don’t have a piece of paper in front of me and go oh, this happened, I need to do that. You learn as an adult what to do”.
	Caregiver: “When it comes to the treatment, I do it when he has his flare-ups…If he’s around something that triggered the asthma, then I will follow the treatment plan until those symptoms go away”.
	Caregiver: “When he had [drug] on his asthma action plan I would do it as little as possible. And then we would change our asthma action plan if I found that we were either visiting the ER or having to go on the [drug] more often”.
Do not receive enough information from their doctor about asthma	Adult with asthma: “…my doctor told me about the good things. Okay, well maybe this will prevent it, but he didn’t really sit down and explain it, the side effects or anything like the negative parts of it”.
Do not feel fully or at all involved in decision-making when selecting asthma treatment	Adult with asthma: “They just assigned [my treatment]”.
	Adult with asthma: “…with my doctor, after we had our conversation and we is talking about medication he just recommends whatever it is that he [decides]”.

Abbreviation: COPD, chronic obstructive pulmonary disease.

Table 6 Sample Quotes for Theme 4: Treatment Concerns and Desires

Subtheme	Quotes
Concerns about device not functioning	Adult with asthma: “Sometimes if I’m puffing it could clog a little bit, would stall…so it may cause me to be frustrated”.
	Caregiver: “…sometimes we don’t get the best use out of them because sometimes it clogs and then I can’t use it anymore so I have wasted my money and I have to start another one”.
Concerns about efficacy	Adult with asthma: “I wish sometimes that [the rescue inhaler] had a little bit more power where you didn’t have to go to the nebulizer”.
	Adult with asthma: “I wish that they were longer lasting…I get desperate and I will take five or six puffs, and then I will still feel out of breath…I wish they could come out with something that would tackle all that”.
	Caregiver: “I just don’t feel like anything works preventative wise, he’s always having asthma problems”.
Preferring nebulizer-based rescue therapy	Adult with asthma: “My nebulizer works faster than my pump rescue inhaler. When I am really bad, I definitely have to use my nebulizer because that’s what works best”.
	Caregiver: “To me it seems like the pump takes too long. [My child] is going [draws breath] then he has to do it again, so at least with the machine he is sitting there and he gets to breathe it all in”.
Concerns about side-effects of rescue inhalers	Adult with asthma: “The jittery side effects of the inhaler are pretty unavoidable”.
	Adult with asthma: “I had to go through the emergency…my heart rate was so elevated they didn’t even want to send me home…and I literally felt like my chest we going to explode. I hate that”.
	Caregiver: “My son takes it he gets the white tongue, he gets jittery. Dizzy, headaches. So, most of the time when he gets his pump, I put him straight to bed. Because if not he can’t even function”.
Concerns about or avoid using oral or injectable corticosteroids	Adult with asthma: “I don’t want to take anything oral like a pill or something like that simply because it’s not only going to affect your asthma, it’s going to affect the rest of your body, and I am overly concerned about the side effects of these medications”.
	Adult with asthma: “I have not taken [drug] specifically because it was the steroid. So, I actually refused to take it. I just did not want to take a whole another steroid…any time that they offer it to me I will try and refuse unless I absolutely have to take it, and usually they can find something else for me to take”.
	Caregiver: “You got to gargle every kind of steroid that they give you, and then it gets worse if he gets really sick and they put you on oral steroids along with it, and then the possibility of getting thrush increases tenfold”.
	Caregiver: “If I could avoid having to get her the steroid, I would at all costs…”.
Concerns about cost of treatments	Adult with asthma: “I was on [drug] forever and then it’s so expensive my insurance changed, so I had to get on the [drug] because obviously a lot cheaper…”.
	Adult with asthma: “I had to have clearance from the doctor to get that specific one because the insurance had changed what type of medication you can get”.
	Adult with asthma: “If your insurance doesn’t cover it then you’re left without it, unless they give you…a sample then it works…”.
Effectiveness, onset, and duration of rescue inhalers	Adult with asthma: “Rescue one puff, done for the day”.
	Adult with asthma: “…I would rather use it one time in a day, than once every four hours I would say”.
	Adult with asthma: “I guess I would want my inhaler to work instantly instead of having to wait for it to work, 30 minutes, maybe an hour. I would like for it work on the first try”.
Rescue inhaler device	Adult with asthma: “I like the discreteness of my [rescue] inhaler because nobody can see. I don’t want to look helpless…I like the smallness that I can even go to the restroom and use it and people don’t say you’re sick”.
	Caregiver: “It would be nice if it was easy for them as a child, she’s seven, it would be nice if she could have a device like this but easier for her to use instead of actually depending also on the school…because literally like I said before the school sometimes they are just like they do not do anything”.
Side effects of rescue inhalers	Adult with asthma: “Something that doesn’t make you either shaky”.
Effectiveness, onset, and duration of maintenance inhalers	Adult with asthma: “That it’s going to work, it’s going to have it under control”.
	Adult with asthma: “I’m looking for something…that’s very fast, that would actually work, that you can do at home”.
	Adult with asthma: “I would like to see an inhaler that I use once a day…end of story”.
Maintenance inhaler devices	Adult with asthma: “I wish it was similar to my rescue where I could pump it”.
	Adult with asthma: “To be able to tell that you actually got what you need…”.
	Caregiver: “[My child] has to be able to be able to push it down to get the full dose”.
Combined rescue/maintenance inhaler	Adult with asthma: “I wish they would just combine the long lasting with the rescue inhaler all in one instead of having to carry on with so many pumps”. Adult with asthma: “[My ideal rescue device is] small, compact, that can go with you wherever you want to go, as long as it fits in the purse we go, and not multiple”.
	Caregiver: “If we can just make it all into one nice pump for the kids”.

Figure 2 Most concerning treatment attributes for rescue (A) and maintenance (B) medications. There are >15 different desired attributes or concerns related to device characteristics reported. The three most mentioned were related to convenience/ease of use, size/discreteness, and dosing-related features (eg, dose counter).