Don A Bukstein1, Adam Friedman2, Erika Gonzalez Reyes3, Mary Hart4, Bridgette L Jones5, Tonya Winders6. 1. Allergy, Asthma & Sinus Center, Milwaukee, WI, USA. 2. Department of Dermatology, George Washington School of Medicine and Health Sciences, Washington, DC, USA. 3. Department of Internal Medicine, University of Texas Health Science Center, San Antonio, TX, USA. 4. Allergy & Asthma Network, Vienna, VA, USA. 5. Children's Mercy Kansas City & University of Missouri-Kansas City School of Medicine, Kansas City, MO, USA. 6. Allergy & Asthma Network, Vienna, VA, USA. twinders@AllergyAsthmaNetwork.org.
Abstract
INTRODUCTION: Little is known about how patients with asthma and eczema perceive their medical care and burden of disease. A survey was conducted to evaluate the perceptions among the general patient population with asthma and/or eczema regarding disease and treatment burden and barriers to adequate care. METHODS: An online survey was completed by market research panelists in the USA between March 24, 2020 and April 6, 2020. Eligible participants were at least 18 years of age and endorsed a diagnosis of asthma and/or eczema. Survey responses are described for all participants, by designated racial/ethnic groups, and by income level. RESULTS: In all, 841 participants completed the survey (asthma, n = 554; eczema, n = 398; both, n = 111; White, n = 421; Black, n = 252; Hispanic, n = 95; low income [less than $15,000/year], n = 99; higher income [at least $15,000/year], n = 713). More Black and Hispanic participants than White participants, and more participants with low income than higher income, endorsed health literacy as a barrier (e.g., filling out official documents, understanding written materials). Participants with low income were less likely than participants with higher income to have an asthma action plan (42% vs 53%, respectively) and to discuss asthma control with their healthcare provider (54% vs 69%). Black and Hispanic participants were more likely than White participants to have an emergency department visit (52% and 49% vs 31%, respectively) or hospitalization (31% and 39% vs 16%) for asthma within the last 12 months. Participants reporting low income indicated that they experienced eczema symptoms more frequently than participants with higher income; 35% of low-income participants vs 15% of higher-income participants reported that they had not tried any eczema treatments. Participants in all racial/ethnic and income-level groups reported that their asthma or eczema impacted their lifestyle and daily activities. CONCLUSION: More effective and culturally informed communication and education strategies to improve health information uptake and shared decision-making are needed to reduce the burdens of disease and treatment in highly impacted populations.
INTRODUCTION: Little is known about how patients with asthma and eczema perceive their medical care and burden of disease. A survey was conducted to evaluate the perceptions among the general patient population with asthma and/or eczema regarding disease and treatment burden and barriers to adequate care. METHODS: An online survey was completed by market research panelists in the USA between March 24, 2020 and April 6, 2020. Eligible participants were at least 18 years of age and endorsed a diagnosis of asthma and/or eczema. Survey responses are described for all participants, by designated racial/ethnic groups, and by income level. RESULTS: In all, 841 participants completed the survey (asthma, n = 554; eczema, n = 398; both, n = 111; White, n = 421; Black, n = 252; Hispanic, n = 95; low income [less than $15,000/year], n = 99; higher income [at least $15,000/year], n = 713). More Black and Hispanic participants than White participants, and more participants with low income than higher income, endorsed health literacy as a barrier (e.g., filling out official documents, understanding written materials). Participants with low income were less likely than participants with higher income to have an asthma action plan (42% vs 53%, respectively) and to discuss asthma control with their healthcare provider (54% vs 69%). Black and Hispanic participants were more likely than White participants to have an emergency department visit (52% and 49% vs 31%, respectively) or hospitalization (31% and 39% vs 16%) for asthma within the last 12 months. Participants reporting low income indicated that they experienced eczema symptoms more frequently than participants with higher income; 35% of low-income participants vs 15% of higher-income participants reported that they had not tried any eczema treatments. Participants in all racial/ethnic and income-level groups reported that their asthma or eczema impacted their lifestyle and daily activities. CONCLUSION: More effective and culturally informed communication and education strategies to improve health information uptake and shared decision-making are needed to reduce the burdens of disease and treatment in highly impacted populations.
Asthma and atopic dermatitis (eczema) are closely associated and often concomitant conditions. Disparities in outcomes for these conditions have been described in various populations. For example, individuals who identify as Black or Hispanic have higher rates of emergency department (ED) visits and hospitalizations for asthma and eczema compared with non-Hispanic White individuals [1-4]. Likewise, those who report low income also have higher rates of ED visits and hospitalizations compared with those with higher incomes [2, 4]. Severe eczema is associated with a lack of insurance, denial of eczema prescriptions by insurers, and the costs of treatments for eczema [4]. Furthermore, eczema may not be readily identified by healthcare providers (HCP) who may lack experience and training in diagnosis of skin conditions in people of color [5]. This gap in medical knowledge may lead to increased morbidity due to missed and/or delayed diagnosis and treatment [6]. Individuals from racially/ethnically marginalized populations and those who report lower income also have reported lower rates of health insurance enrollment than those from non-marginalized groups, which impacts overall access to quality healthcare [1, 2]. For patients who are underinsured or uninsured, the ED often becomes the fallback for medical care [1]. These social determinants of health are known contributors to observed asthma and allergic disease disparities [7, 8].The physical, emotional, and healthcare burden of asthma and eczema is well documented. Patients report that these conditions can impact daily activities, quality of life, sleep quality, and work/school productivity [9-12]. Both asthma and eczema are chronic conditions which often require lifelong treatment to achieve and maintain control, creating additional costs and emotional burden [11, 13–15]. In addition, asthma has significant financial impact because of the need for frequent office visits for continued monitoring of acute care, as well as ED visits, and hospitalizations associated with exacerbations [16, 17]. Healthcare utilization is also higher among patients with eczema compared with the general population [9, 13].While the overall burden of asthma and eczema is well known, there is little information about how patients perceive their disease, medical care, and burden of disease. A survey was conducted to evaluate the perceptions among the general patient population with asthma and/or eczema regarding disease and treatment burden and barriers to adequate care.
Methods
Survey Development
The survey was developed to assess how patients with asthma and/or eczema perceive their disease and treatment burden in terms of physical, emotional and social health, how they perceive their asthma- and eczema-related medical care, and to identify barriers to care.
Participant and Survey Details
The survey was posted online for access through panels consisting of individuals in the general population of the USA between March 24, 2020 and April 6, 2020. Panels were hosted by Dynata, a global online market research firm based in the USA. Panelists accessed the survey through the Dynata dashboard or platform for their respective panel. Participants were required to be at least 18 years of age and indicate that they were diagnosed by a medical professional with either asthma or eczema.The 94-question online survey shown in Supplemental Table E1 was self-completed by each participant. For completing the survey, participants were given an incentive that varied by panel. Typically, the incentives were “panel points” that could be exchanged for goods or services through the panelists’ respective panel dashboard.The survey was reviewed by an institutional review board and was granted exemption status. All participants provided written informed consent at the time of survey participation for the use of their survey responses.
Analysis
In addition to responses in the overall participant population, survey responses were analyzed by self-reported race and ethnicity (White, Black, or Hispanic) and self-reported income status (low income, income less than $15,000/year; higher income, income at least $15,000/year). Participants who identified as Hispanic were not further divided into Hispanic racial categories (i.e., Black Hispanic) for the analysis. Statistical significance between Black or Hispanic participants versus White participants, and for participants with low income versus participants with higher income, was defined as non-overlapping 95% confidence intervals.
Results
Demographic and Disease Characteristics
A total of 841 participants completed the survey; 554 (66%) participants reported an asthma diagnosis and 398 (47%) reported an eczema diagnosis (111 [13%] participants reported both diagnoses). The majority (76%) of participants were women, 41% were aged 55 or over, 50% identified as White, 30% identified as Black, and 11% identified as Hispanic (Table 1). Asthma was reported by a higher percentage of participants identifying as Black or Hispanic than White participants (85% and 87% vs 48%, respectively), whereas eczema was reported by a lower percentage of participants identifying as Black or Hispanic than White participants (21% and 19% vs 71%, respectively; Table 1).
Table 1
Demographics of survey participants
Demographic, %
Total participants (N = 841)
Total with asthma (n = 554)
Total with eczema (n = 398)
White (n = 421)
Black (n = 252)
Hispanic (n = 95)
Low income (n = 99)
High income (n = 713)
Female
76
79
71
72
80a
84a
88
73
Age, years
18–24
13
17
6
6
27a
23a
18
12
25–34
16
17
15
13
18
22a
12
16
35–44
16
16
15
12
15
22a
17
16
45–54
16
16
15
17
10a
15
22
14
55–64
20
19
22
22
19
14
23
19
65+
21
16
28
30
12a
4a
7b
22
Ethnicity
White
50
36
75
100
–
23
43
51
Black
30
38
14
–
100
25
42b
29
Native American
3
4
2
–
–
7
1
4
Asian
8
10
5
–
–
3
4
9
Native Hawaiian/Pacific Islander
1
1
1
–
–
4
0
1
Other
7
9
3
–
–
36
8
7
Prefer not to answer
1
1
1
0
1
1
1
1
Hispanic
11
15
5
5
10
100
10
12
Diagnosed conditions
Allergies
62
69
58
63
59
65
68
61
Asthma
66
100
28
48
85a
87a
75b
64
Eczema
47
20
100
71
21a
19a
37
49
Depression
28
28
32
33
21a
36
46b
26
Hypertension
33
31
37
37
33
23a
31
33
Nasal allergies
28
29
31
32
19a
34
26
27
Psoriasis
6
4
9
9
2a
4
5
6
Sleep apnea
13
13
16
16
10a
16
16
13
Education
Less than high school
2
3
2
1
6a
2
9b
1
High school/GED
16
16
15
16
21
17
30b
15
Some college/Associate’s degree
39
39
37
39
43
46
39
40
Bachelor’s degree or higher
42
42
46
44
30a
35
22b
44
Geographic region
Northeast
18
17
20
21
14a
19
13
18
Midwest
21
19
24
24
21
8a
28
20
South
39
38
37
35
51a
42
35
40
West
22
26
19
20
14a
31a
24
22
Household income
< $15,000
12
13
9
10
17a
11
100
–
$15,000–24,999
12
12
11
10
15
11
–
14
$25,000–35,999
12
12
14
12
14
11
–
15
$35,000–49,999
16
15
16
16
16
22
–
18
$50,000–74,999
22
22
22
21
18
25
–
26
$75,000–99,999
17
14
20
19
14
13
–
20
$100,000+
5
7
5
8
4
4
–
7
Prefer not to answer
3
5
3
4
2
3
–
0
aSignificantly different than White participants
bSignificantly different than participants with higher income
Demographics of survey participantsaSignificantly different than White participantsbSignificantly different than participants with higher income
Socioeconomic Characteristics
Among all participants, 99 (12%) reported income less than $15,000/year (low income). Of the participants with low income, a higher percentage were female and a higher percentage identified as Black compared with participants with higher income (Table 1). Asthma was reported by a higher percentage of participants with low income and eczema was reported by a lower percentage in this group compared with participants with higher income (Table 1).
Healthcare Access and Communication
Black, Hispanic, and White participants reported similar frequencies for having employer-provided health insurance (31%, 38%, and 33%, respectively). Black participants were more likely to have Medicaid or other state-provided health insurance than White participants (37% vs 15%, respectively). Only 6% of participants with low income reported having employer-provided health insurance, compared with 36% of participants with higher income. Participants with low income were more likely to have Medicaid or other state-provided health insurance than participants with higher income (72% vs 17%, respectively). In all, 6% of all participants did not have any health insurance. The primary reported reason for lack of health insurance was the inability to afford it.A similar percentage of Black, Hispanic, and White participants (43%, 48%, and 43% respectively) reported non-adherence to medication prescribed by their HCP. A higher percentage of participants with low income reported non-adherence to medication than participants with higher income (52% vs 40%, respectively). Among those who reported non-adherence, reasons for not taking a prescribed medication were the medication was too expensive (34%), the medication was not covered by insurance (23%), the prescription took too long to fill (12%), or other reasons such as side effects, feeling better, forgetting, etc. (31%).A higher percentage of Black participants (28%) and Hispanic participants (33%) than White participants (14%), and a higher percentage of participants with low income (42%) than higher income (17%), reported that they lacked transportation in the previous 12 months to get to appointments, work, or get things they need. More Black and Hispanic participants than White participants, and more participants with low income than higher income, reported that they were at least somewhat likely to need help filling out official documents (Fig. 1a). In addition, a higher percentage of Black and Hispanic participants than White participants indicated that they sometimes have problems learning about their medical conditions because of difficulty understanding written materials (Fig. 1b). Participants with low income were less likely than participants with higher income to indicate that they provide their HCP with all the necessary information for their care (Fig. 2a). The majority of all participants indicated that they often make sure the HCP explains anything they do not understand (Fig. 2b). However, Hispanic participants indicated that they were less likely than White participants to ask the HCP questions (Fig. 2c). A higher percentage of Black participants (40%) and Hispanic participants (42%) than White participants (32%) indicated that they would definitely question the HCP’s advice based on their own research.
Fig. 1
Percentage of participants a likely to need help filling out official documents and b who have problems learning about their medical condition because of difficulty understanding written materials. aSignificantly different than White participants. bSignificantly different than participants with higher income
Fig. 2
Percentage of participants a likely to give healthcare provider all information needed for care, b who make sure the healthcare provider explains anything they do not understand, and c who ask their healthcare provider questions. aSignificantly different than White participants. bSignificantly different than participants with higher income
Percentage of participants a likely to need help filling out official documents and b who have problems learning about their medical condition because of difficulty understanding written materials. aSignificantly different than White participants. bSignificantly different than participants with higher incomePercentage of participants a likely to give healthcare provider all information needed for care, b who make sure the healthcare provider explains anything they do not understand, and c who ask their healthcare provider questions. aSignificantly different than White participants. bSignificantly different than participants with higher income
Social, Lifestyle, and Activity Impact of Asthma and Eczema
Overall, participants indicated that their asthma and eczema can have a negative social impact (Table 2). Participants with asthma were more likely than participants with eczema to feel that they were left out of things or treated unkindly because of their condition. In contrast, participants with eczema were more likely than participants with asthma to feel embarrassed because of their condition.
Table 2
Participant perception of the social impact of asthma or eczema
Social perception, %
Total with asthma (n = 554)
Total with eczema (n = 398)
White (n = 421)
Black (n = 252)
Hispanic (n = 95)
Low income (n = 99)
High income (n = 713)
“Because of my asthma/eczema, I feel left out of things”
Never
38
61
56
42a
39a
40
48
Rarely
25
20
22
26
21
27
22
Sometimes
26
13
18
22
24
24
26
Often
8
5
3
8a
12a
8
6
Always
3
1
1
2
4
1
2
“Because of my asthma/eczema, people are unkind to me”
Never
68
78
75
68a
66
64
73
Rarely
17
14
17
17
18
22
15
Sometimes
11
7
6
12a
11a
13
9
Often
2
0
1
1
3
0
2
Always
2
1
1
2
2
1
1
“Because of my asthma/eczema, people avoid looking at me”
Never
75
73
72
77
74
67
75
Rarely
12
19
20
9
11
20
14
Sometimes
10
6
7
10
13a
10
8
Often
2
1
1
2
2
1
2
Always
1
1
0
2
0
2
1
“I feel embarrassed because of my asthma/eczema”
Never
52
35
40
59a
48
50
46
Rarely
19
24
23
17a
21
16
21
Sometimes
19
29
26
15a
20
23
23
Often
7
8
7
7
5
5
7
Always
3
4
4
2
6
6
3
“I feel embarrassed because of my physical limitations
Never
44
47
46
53
46
37
48
Rarely
15
18
18
12a
10a
16
15
Sometimes
27
24
25
21
27
30
25
Often
7
7
6
6
7
8
7
Always
7
4
5
8
10a
9
5
“Some people act as though it is my fault that I have asthma/eczema”
Never
62
69
68
66
62
62
66
Rarely
12
13
14
9
10
17
11
Sometimes
16
13
12
16
18
15
14
Often
7
4
5
7
7
4
6
Always
3
1
5
2
3
2
3
aSignificantly different than White participants
Participant perception of the social impact of asthma or eczemaaSignificantly different than White participantsClose to half of participants (43%) reported that their asthma kept them from getting much done at work/school/home at least some of the time in the past 4 weeks. Approximately half (53%) of participants also reported that they had to change their lifestyle and 15% changed jobs because of their asthma. Participants commonly had to modify or stop doing activities because of asthma, particularly exercising or sports (Table 3).
Table 3
Percentage of participants that stopped or modified their activities because of asthma
Activity, %
Total with asthma (n = 554)
White (n = 201)
Black (n = 213)
Hispanic (n = 83)
Low income (n = 74)
High income (n = 454)
Exercise
42
42
43
51
41
44
Sports
25
21
31a
34a
28
25
Climbing stairs
19
24
16a
19
23
19
Parking closer to the door when shopping
16
22
12a
10a
19
16
Social activities
16
13
16
13
19
16
Traveling
14
17
14
13
18
14
Shopping
11
10
11
10
15
11
Church
5
5
5
4
4
5
Movies
4
3
3
4
5
4
Other
5
5
4
0a
3
5
None of these
36
37
34
35
32
36
aSignificantly different than White participants
Percentage of participants that stopped or modified their activities because of asthmaaSignificantly different than White participantsApproximately one-third of participants with eczema (32%) reported that their skin had been itchy, sore, painful or stinging either “very much” or “a lot” in the last week (Table 4). A higher percentage of Hispanic participants than White participants reported that eczema had negatively impacted several aspects of their life “very much” or “a lot” in the past week (Table 4).
Table 4
Percentage of participants reporting “very much” or “a lot” for frequency of problems with eczema over the last week
Problem, %
Total with eczema (n = 398)
White (n = 298)
Black (n = 54)
Hispanic (n = 18)
Low income (n = 37)
High income (n = 350)
How itchy, sore, painful or stinging has your skin been?
32
30
32
39
41
32
How much has your skin influenced the clothes you wear?
16
14
17
50a
27
16
How embarrassed or self-conscious have you been because of your skin?
14
12
15
33a
19
14
How much has your skin interfered with you going shopping or looking after your home or garden?
6
4
6
33a
8
6
How much has your skin affected any social or leisure activities?
6
5
6
17a
8
6
How much has your skin made it difficult for you to do any sport?
6
5
7
33a
5
6
How much of a problem has the treatment for your skin been, for example by making your home messy or by taking up time?
6
5
6
17a
5
6
How much has your skin created problems with your partner or close friends or relatives?
4
3
4
22a
0
4
How much has your skin caused any sexual difficulties?
4
4
4
33a
5
4
Questions are from the Dermatology Life Quality Index
aSignificantly different than White participants
Percentage of participants reporting “very much” or “a lot” for frequency of problems with eczema over the last weekQuestions are from the Dermatology Life Quality IndexaSignificantly different than White participants
Patient Perception of Asthma
In general, participants felt their asthma was fairly well controlled; 9% of Black participants, 11% of Hispanic participants, 7% of White participants, 10% of participants with low income, and 8% of participants with higher income indicated that their asthma was poorly or not at all controlled. More than 80% of participants in all subgroups reported that their asthma was currently under control (Fig. 3a). A higher percentage of Hispanic participants (41%) than Black participants (36%) and White participants (30%), and a higher percentage of participants with low income (42%) than those with higher income (31%), reported that they used a rescue inhaler at least once a day in the past 4 weeks. Only 37% of all participants with asthma had an asthma action plan that was updated yearly. Hispanic participants were more likely than White participants to have an asthma action plan that was updated yearly (Fig. 3b). Participants with low income were less likely than participants with higher income to have an asthma action plan and to discuss asthma control with their HCP (Fig. 3b, c). A higher percentage of Black participants than White participants believe that their HCP always understands their needs for managing their asthma (Fig. 4). However, 14% of Hispanic participants indicated that their HCP rarely or never understood their needs.
Fig. 3
Percentage of participants a who consider their asthma currently under control, b with an asthma action plan, and c who discuss asthma control with their physician. aSignificantly different than White participants. bSignificantly different than participants with higher income
Fig. 4
Percentage of participants who believe their physician understands their needs for managing their asthma. aSignificantly different than White participants
Percentage of participants a who consider their asthma currently under control, b with an asthma action plan, and c who discuss asthma control with their physician. aSignificantly different than White participants. bSignificantly different than participants with higher incomePercentage of participants who believe their physician understands their needs for managing their asthma. aSignificantly different than White participants
Asthma Treatment
Most (65%) of the participants with asthma indicated that they see their primary care physician for asthma care. Black participants indicated they were more likely to receive care in an urgent care center for their asthma than White participants (9% vs 3%, respectively), whereas Hispanic participants indicated they were more likely to receive asthma care in the ED than White participants (6% vs 2%, respectively).
Asthma Outcomes
In the past 12 months, 39% of participants with asthma reported at least one visit to the ED/urgent care for asthma and 23% had been hospitalized. Black and Hispanic participants were more likely than White participants to have at least one ED/urgent care visit or hospitalization for asthma in the past 12 months (Fig. 5). The percentage of participants with low income who had at least one ED/urgent care visit or hospitalization was similar to those with higher income (Fig. 5).
Fig. 5
Percentage of participants with at least one emergency department (ED)/urgent care visit or hospitalization for asthma in the past 12 months. aSignificantly different than White participants
Percentage of participants with at least one emergency department (ED)/urgent care visit or hospitalization for asthma in the past 12 months. aSignificantly different than White participants
Patient Perception of Eczema
Approximately 20% of participants with eczema reported experiencing itchy and flaky skin and 36% experience dry/rough skin on a daily basis (Table 5). The daily occurrence of itchy, cracked, flaky, or dry/rough skin was reported in more Hispanic participants, but fewer Black participants, than White participants (Table 5). Participants with low income indicated that they experienced itchy, bleeding, weeping, and dry/rough skin more frequently than participants with higher income (Table 5). Among all participants with eczema, dry skin was the most common trigger that made eczema worse (76%), followed by skin irritants (58%) and stress (49%). Nearly half of participants (45%) reported sleep was disturbed at least 1–2 days a week because of their eczema.
Table 5
Percentage of participants reporting eczema symptoms
Frequency of symptoms, %
Total with eczema (n = 398)
White (n = 298)
Black (n = 54)
Hispanic (n = 18)
Low income (n = 37)
High income (n = 350)
Has skin been itchy?
No days
13
15
7
11
2
13
1–2 days
28
26
35
11
32
28
3–4 days
26
25
35
28
30
26
5–6 days
11
10
13
33a
5
11
Every day
22
24
9a
16
30
21
Has skin been flaking off?
No days
30
30
43
17
24
30
1–2 days
28
29
28
11
35
28
3–4 days
14
12
17
33a
14
14
5–6 days
7
7
3
11
8
7
Every day
21
22
9a
28
19
21
Has skin felt dry/rough?
No days
12
12
22a
6
5
13
1–2 days
24
25
19
11
19
24
3–4 days
17
15
32a
11
16
18
5–6 days
11
11
11
11
11
11
Every day
36
37
17a
61a
49
34
Has skin been cracked?
No days
39
40
43
22
49
38
1–2 days
25
24
32
17
19
26
3–4 days
14
14
13
28
14
14
5–6 days
5
5
7
0
5
5
Every day
17
17
6a
33
14
17
Has skin been bleeding?
No days
66
68
70
39a
49b
67
1–2 days
22
22
19
28
35
21
3–4 days
7
6
9
11
8
7
5–6 days
3
1
2
17a
0
3
Every day
2
3
0
6
8b
2
Has skin been weeping?
No days
71
71
80
50
60
72
1–2 days
18
20
11
22
26
18
3–4 days
7
6
7
22a
11
7
5–6 days
2
1
2
6
3
2
Every day
2
2
0
0
0
1
Has sleep been disturbed?
No days
55
58
54
28a
43
57
1–2 days
24
24
20
17
30
23
3–4 days
12
10
22a
44a
19
80
5–6 days
4
3
4
6
0
4
Every day
5
5
0
6
8
5
aSignificantly different than White participants
bSignificantly different than participants with higher income
Percentage of participants reporting eczema symptomsaSignificantly different than White participantsbSignificantly different than participants with higher income
Eczema Treatment
Topical treatments, namely corticosteroids, were the most common form of treatment; 26% reported having tried systemic treatments (Supplemental Table E2). Use of calcineurin inhibitors and dupilumab was reported by a higher percentage of Hispanic participants than White participants (Supplemental Table E2). Participants with low income were more likely to have not tried any treatment for their eczema than participants with higher income (35% vs 15%, respectively).
Discussion
The results of this survey indicate that patients with asthma and eczema perceive a physical, emotional, and social burden related to their condition. The burden of asthma and eczema disease and treatment impacts patients differently. These differences may be associated with various factors such as social determinates of health. Individuals who identified as Black or Hispanic endorsed barriers related to ineffective health education and communication strategies, such as a greater need for help filling out paperwork and problems understanding written materials, than White patients. Black and Hispanic participants also reported experiencing more ED visits and hospitalizations than White participants. Patients reporting low income also endorse ineffective health education and communication strategies, have fewer asthma management discussions with an HCP, and have undermanaged eczema compared with patients with higher incomes. Thus, there is a need to develop effective and culturally appropriate teaching methods, materials, and interventions which meet the needs of all patients. Fortunately, nearly all of the participants had some form of health insurance, which was often provided by Medicaid or other state-funded programs.The responses in this survey suggest that current methods of providing care to patients do not lead to equitable healthcare access to all. Participants with asthma reporting low income were also less likely to have an asthma action plan or discuss asthma control with their HCP, and 14% of Hispanic participants indicated that their HCP rarely or never understood their needs. Furthermore, among the participants with eczema, approximately a third of participants with low income and Hispanic participants had not tried any treatments for their eczema, despite a high frequency of symptoms and a negative impact of their eczema on quality of life. These results emphasize the importance of effective communication, including addressing language barriers and implementation of shared decision-making (SDM) between HCPs and patients in asthma and eczema disease management. Although SDM should be a part of disease management for every patient, more research is needed to understand the needs of patients with low income and how SDM may meet these needs. Shared decision-making takes patient preferences and limitations into account, giving patients a sense of empowerment for their treatment and engaging the HCP to discover what the patient actually needs, not what the HCP thinks the patient needs. Surveys of a diverse patient population in Canada revealed that total family income was the only non-modifiable patient characteristic that was associated with an SDM experience, with higher income being associated with a better experience [18]. Patients with low income or those from marginalized groups may feel less empowered to facilitate SDM or be less likely to be seen in environments where SDM is focused on as a priority in interacting with patients. Thus, greater efforts are needed to implement SDM in clinics where it is not currently being practiced and to make SDM easier for patients. SDM will further inform caregivers on the individualized burden of disease and burden of therapy.Among the participants of this survey, Black and Hispanic participants were more likely to have an ED visit or hospitalization for asthma within the last 12 months than White participants. ED visits are an indicator of poor asthma control because they are often associated with an exacerbation. However, participants generally perceived their asthma as being fairly well controlled and the survey did not capture the reasons that individuals were seen in the ED versus another type of medical setting. A cross-sectional study of older patients with asthma in the USA also found a higher number of ED visits in Black and Hispanic individuals compared with White individuals even after controlling for medication use, health insurance coverage, and impaired access to cost [1]. It is possible that some patients may be limited to seeking care in the ED because of a lack of HCPs in predominantly Black, Hispanic, and low-income communities or because of a limited number of medical care sites that accept their insurance. Social determinants of health overall may drive higher hospitalizations in marginalized minority populations. A study of COVID-19 cases in a California integrated health system found that Black patients had a 2.7-times higher likelihood of hospitalization than non-Hispanic White patients after controlling for age, sex, comorbidities, and income [19]. Furthermore, social and economic vulnerability is significantly associated with COVID-19 incidence and mortality [20, 21]. Racism and provider bias in the healthcare system are causes for healthcare disparities that are beginning to be explored for asthma and eczema [22-25]. Although genetic factors have often been hypothesized as a reason for the disparity in health outcomes in Black patients, an analysis of two large cohorts in the USA indicated that African genetic ancestry was not predictive of risk of eczema or eczema control [26].The results of the current survey indicate that disparities in asthma and eczema patients occur on physical, economic, and emotional levels. Overall health is influenced not just by the disease itself but societal factors including housing, environmental quality, food security, and discrimination/racism. To achieve health equity in asthma and eczema, these societal factors need to be addressed (Fig. 6) [27].
Fig. 6
The path to achieving health equity.
Adapted and reproduced from the Health Equity Institute for Research, Practice & Policy [27]
The path to achieving health equity.Adapted and reproduced from the Health Equity Institute for Research, Practice & Policy [27]A limitation of the survey is that it only examined White, Black, or Hispanic, and low-income versus higher-income subpopulations. No analyses within Hispanic subgroups (e.g., Black Hispanic) were conducted, and other subpopulations in the USA that have been shown to be at-risk for poor asthma and eczema outcomes (i.e., American Indian/Alaska Native, maternal smoking) were not evaluated [28, 29]. The numbers of Hispanic and participants with low income were relatively low compared with the other subpopulations, which may limit the ability to make effective comparisons. In addition, since participants were reached by online panels and internet access was required to complete the survey, participant selection was limited and potentially biased to those with access to these resources.
Conclusions
Healthcare programs, payers, and policy makers need to be aware of the populations at-risk for the greatest burden associated with asthma and eczema. Specific efforts, including more effective and culturally informed communication and education strategies to improve health information uptake and SDM, need to be made to provide the resources and support to reduce the burdens of disease and treatment in these highly impacted populations.Below is the link to the electronic supplementary material.Supplementary file1 (PDF 511 KB)
Why carry out this study?
Understanding the perceptions among the general patient population with asthma and/or eczema regarding disease and treatment burden and barriers to adequate care will help healthcare programs and policy makers to develop targeted efforts to improve outcomes.
What was learned from the study?
The burden of asthma and eczema disease and treatment impacts patients differently and is associated with social determinates of health.
Some Black and Hispanic patients endorse health literacy barriers and experience more emergency department visits and hospitalizations than White patients.
Some patients with low income endorse health literacy barriers, have fewer asthma management discussions with their healthcare provider, and have undermanaged eczema than patients with higher incomes.
Interventions and materials to support health literacy and shared decision-making conversations are needed to mitigate these observed disparities and overall move towards opportunity for health equity in Black, Hispanic, and low-income patients with asthma and eczema.
Authors: David M Mosen; Michael Schatz; Rachel Gold; Richard A Mularski; Winston F Wong; Jim Bellows Journal: Am J Manag Care Date: 2010-11 Impact factor: 2.229