Abstract
Background.
Mental and social health in preschool caregivers has been inadequately studied but may influence respiratory symptom recognition and management.
Objective.
This study identified preschool caregivers at highest risk for poor mental and social health outcomes based on patient-reported outcome measures. We hypothesized that caregivers with the poorest mental and social health would have worse quality of life and preschool children with more wheezing episodes.
Methods.
Female caregivers (N=129) with a preschool child 12–59 months of age with recurrent wheezing and at least one exacerbation in the previous year completed eight validated patient-reported outcome measures of mental and social health. K-means cluster analysis was performed utilizing each instrument T-score. Caregiver/child dyads were followed for 6 months. Primary outcomes included caregiver quality of life and wheezing episodes in their preschool children.
Results.
Three clusters of caregivers were identified (“low risk”, n=38; “moderate risk”, n=56; “high risk”, n=35). The high risk cluster had the lowest life satisfaction, meaning and purpose and emotional support and the highest social isolation, depression, anger, perceived stress, and anxiety that persisted over six months. This cluster had the poorest quality of life and marked disparities in social determinants of health. Preschool children from high risk caregivers had more frequent respiratory symptoms and a higher occurrence of any wheezing episode, but lesser outpatient physician utilization for wheezing management.
Conclusion.
Caregiver mental and social health is associated with respiratory outcomes in preschool children. Routine assessment of mental and social health in caregivers is warranted to promote health equity and improve wheezing outcomes in preschool children.
Keywords: Anxiety, Asthma control, Caregiver burden, Depression, Disparity, Mental health, Patient-reported outcomes, Social determinants of health, Stress, Wheezing
Introduction
Wheezing is a common and troubling symptom in preschool children in the United States. Although there is variability in the severity and frequency of wheezing in affected children,1–5 the morbidity of this age group is significant. In 2019, preschool children accounted for nearly 33% of all pediatric Emergency Department visits and nearly 45% of all pediatric hospitalizations for wheezing and asthma exacerbations.6, 7 Preschool children with recurrent wheezing, defined as those children with two or more lifetime episodes of significant wheezing requiring healthcare attendance,8 are particularly problematic and frequently require hospital readmission for acute wheezing management.9 Recurrent wheezing in preschool children is therefore a substantial driver of wheezing-related costs in children, not only from direct expenditures, but also from missed days of work and other indirect expenses.10, 11
Unlike adults and older children with asthma, preschool children with recurrent wheezing are completely reliant on their caregivers for care. Although several studies have characterized the impact of asthma in older children on caregivers,12, 13 studies of preschool caregivers are rare. Existing studies of preschool caregivers have mostly focused on single constructs such as asthma-related caregiver quality of life14 or functional status during an acute exacerbation,15 or alternatively, have focused on single symptoms of stress and depression.16 Most studies have also assessed these constructs at a single point in time. No study to date has examined multiple, validated, patient-reported outcomes of mental and social health collectively in caregivers of preschool children with recurrent wheezing. This is a major shortcoming since caregiver mental and social health may play an important role in wheezing recognition and management in preschool children.
Given this gap in knowledge, we administered eight validated and psychometrically sound measures of mental and social health from the Patient-Reported Outcomes Measurement Information System (PROMIS) and the National Institutes of Health Toolbox to caregivers of children with preschool children with recurrent wheezing at baseline and at six months. We hypothesized that “clusters” of caregivers with distinct features of mental and social health would be identified by k-means cluster analysis and that caregivers with the poorest mental and social health would have worse quality of life and preschool children with more wheezing episodes requiring healthcare use. We further hypothesized that clusters of identified caregivers would be associated with social determinants of health and would have temporal stability over 6 months.
Methods
Female adult caregivers 18–50 years with a preschool child 12–59 months of age with recurrent wheezing and at least one wheezing episode treated with systemic corticosteroids in the previous 12 months were included in the study. Recurrent wheezing was defined as a lifetime history of two or more episodes of wheezing, each lasting at least 24 hours and requiring treatment with albuterol. Caregivers were excluded if their preschool child had co-morbid disorders associated with wheezing (such as immune deficiency, cystic fibrosis, pulmonary aspiration, congenital airway anomalies, or premature birth before 35 weeks gestation) or if their child had a significant developmental delay or failure to thrive. Caregivers provided informed written consent for themselves and their preschool child to participate in the study. All study procedures were performed in accordance with the relevant guidelines and regulations in the Declaration of Helsinki.
Overview of recruitment and study design.
Families were recruited from Children’s Healthcare of Atlanta facilities in Atlanta, Georgia, consisting of 3 pediatric hospitals, 8 urgent care centers, and a large subspecialty building. Children’s Healthcare of Atlanta manages more than 915,000 visits each year from children across all 159 counties in Georgia. The population served is 39% White, 36% Black, and 17% Hispanic. However, many of the patients presenting for asthma care are from two surrounding counties which are 34% White, 61% Black, and 3% Hispanic. Potential families of children meeting inclusion criteria were identified through a review of electronic medical records and were contacted by email, phone, or in person during clinical encounters.
Caregivers completed an in-person, research-only visit and an in-person follow up visit at 6 months. Visits were rescheduled if the preschool children had an asthma exacerbation treated with systemic corticosteroids in the preceding two weeks. Patients were telephoned at monthly intervals to assess for respiratory-related healthcare utilization.
Asthma action plan.
At the baseline visit, caregivers received a written action asthma plan for their child, an albuterol sulfate metered dose inhaler with a valved holding chamber and face mask, and prednisolone (2 mg/kg/day for 2 days followed by 1 mg/kg/day for 2 days). The action plan included green, yellow and red zones defined by symptoms. For yellow zone symptoms, caregivers were instructed to administer two inhalations of albuterol sulfate every four hours as needed for up to 24 hours. The red zone instructed caregivers to initiate the prednisolone prescription and to seek medical care (by telephoning the study team or their preferred medical provider or initiating emergency medical services). Caregivers were also provided with 24-hour direct telephone support from the study team.
Caregiver characterization.
At each study visit, caregivers completed demographic and medical history questionnaires and validated, patient-reported outcome measures of social and mental health. These measures included the PROMIS tools for general life satisfaction (5a), meaning and purpose (4a), emotional support (4a), social isolation (4a), depression (4a), anger (5a), and anxiety (4a) and the National Institutes of Health Toolbox fixed form for perceived stress. The PROMIS tools assessed symptoms over the past 7 days whereas the NIH Toolbox form assessed symptoms over the past month. These tools utilize a T-score metric in which 50 is the mean of the reference population and 10 is the standard deviation of the reference population. Higher T-scores reflect more the concept being measured.17 Caregivers also completed the Pediatric Asthma Caregiver’s Quality of Life Questionnaire (PACQLQ), which contains 13 questions in two domains (activity and emotional function) that reflect the impact of the child’s asthma symptoms during the previous week. Responses were scored on a 7-point scale and averaged, with lower scores indicating poorer quality of life.18
Preschool child characterization.
Respiratory symptoms in the preschool child were assessed over the previous week with a five-item Child Symptom Questionnaire, which is an adaptation of the Pediatric Asthma Caregiver Diary19 with questions pertaining to the severity of cough, wheezing, trouble breathing, activity interference and sleep interference. Each of the 5 questions was scored from 0 (none) to 5 (very severe), with higher scores reflecting greater respiratory symptoms. with higher scores reflecting greater respiratory symptoms. Respiratory and asthma control in the preschool child were assessed with the Test for Respiratory and Asthma Control in Kids (TRACK) questionnaire.20 This tool contains three questions pertaining to symptoms over the past 4 weeks, 1 question pertaining to short-acting beta agonist use over the past 3 months, and 1 question pertaining to oral corticosteroids over the past three months that each have 5 responses that are summed on a scale between 0 and 20, with scores of 80 or more reflecting good control.21 Preschool participants also submitted blood samples for total serum IgE and blood eosinophil counts (Children’s Healthcare of Atlanta, Atlanta, Georgia). Aeroallergen sensitization was determined by specific IgE testing with twelve extracts: Dermatophagoides farinae, Dermatophagoides pteronyssinus, dog dander, cat dander, Blatella germanica, Alternaria tenuis, Aspergillus fumagatis, oak tree, pecan tree, Bermuda grass, Johnson grass, and common ragweed (Ambrosia artemisiifolia) (Greer® Laboratories, Lenoir, North Carolina). Tests were considered positive if specific IgE values were ≥0.35 kU/L (Children’s Healthcare of Atlanta, Atlanta, Georgia).
Statistical analyses.
T-scores for each caregiver-reported measure of mental and social health (8 in total) were obtained from the HealthMeasures Scoring Service available online at www.assessmentcenter.net/ac_scoringservice. K-means cluster analysis was performed utilizing the T-scores for each instrument at the baseline visit. Analyses with 2, 3, and 4 cluster solutions and a maximum of 10 iterations were explored and the analysis with 3 clusters was retained for further testing. Cluster groups were compared with Chi-Square tests and analysis of variance with Tukey’s Least Significant Difference post hoc tests. All analyses were performed with IBM SPSS Statistics software, version 28 (Chicago, Illinois) utilizing a 0.05 significance level without adjustment for multiple testing.
Results
One hundred twenty-nine female caregivers and their children were enrolled. K-means cluster analysis of the eight pre-selected patient-reported outcome measures of caregiver mental and social health yielded three cluster groups (Table 1). Cluster 1 was termed “low risk” and was characterized overall by the highest life satisfaction, meaning and purpose, and emotional support and the lowest social isolation, depression, anger, and perceived stress. Cluster 2 was termed “moderate risk” and was characterized by intermediate scores for each instrument, except for perceived stress and anxiety, which were slightly greater compared to Cluster 1. Cluster 3 was termed “high risk” and was characterized by the lowest life satisfaction, meaning and purpose and emotional support and the highest social isolation, depression, anger, perceived stress, and anxiety (Table 1).
Table 1.
Patient-reported outcome measures of social and mental health in caregivers, by cluster assignment. Data represent the mean T-score for each instrument ± standard deviation (SD) or the number of participants (%).
| Outcome measure | Direction of risk | Low risk N=38 | Moderate risk N=56 | High risk N=35 |
|---|---|---|---|---|
| Life Satisfaction Below one SD1 |
Lower=worse | 60.1 ± 8.1 0 |
57.5 ± 8.2 2 (3.6) |
48.3 ± 6.9 5 (14.3)* |
| Meaning and Purpose Below one SD |
Lower=worse | 64.8 ± 2.2 0 |
58.3 ± 6.0 0 |
51.5 ± 6.8 2 (5.7) |
| Emotional Support Below one SD |
Lower=worse | 61.1 ± 2.1 0 |
58.7 ± 5.2 0 |
50.5 ± 7.2 2 (5.7) |
| Social Isolation Above one SD |
Higher=worse | 37.0 ± 3.6 0 |
46.1 ± 4.8 0 |
52.5 ± 5.0 3 (8.6)* |
| Depression Above one SD |
Higher=worse | 41.7 ± 2.5 0 |
44.9 ± 5.3 0 |
55.5 ± 6.6 8 (22.9)* |
| Anger Above one SD |
Higher=worse | 38.3 ± 5.5 0 |
49.3 ± 5.0 2 (3.6) |
56.6 ± 8.2 12 (34.3)* |
| Perceived Stress Above one SD |
Higher=worse | 47.6 ± 6.2 0 |
55.2 ± 5.0 11 (19.6) |
61.1 ± 5.7 19 (54.3)* |
| Anxiety Above one SD |
Higher=worse | 43.9 ± 5.2 0 |
53.0 ± 6.2 5 (8.9) |
59.8 ± 5.1 16 (45.7)* |
| Sum of instruments with scores above or below one SD | 0 | 0.36 ± 0.62 Range, 0–2 |
1.91 ± 1.29 Range, 0–5 |
Refers to the number of caregivers with T-scores falling above or below the standard deviation (SD) of the reference population for the instrument. T-scores above or below the SD of the reference population correspond to clinical risk.
p<0.05 for three-group comparison
Caregiver features at baseline.
Features of the caregivers, by cluster group assignment, are shown in Table 2. Caregivers in the low risk and moderate risk clusters had a similar racial distribution, medical history, educational attainment, household income and other household features. However, caregivers in the moderate risk cluster were more likely to be of Hispanic ethnicity. In contrast, the high risk cluster included fewer white and more Hispanic caregivers with lower educational attainment, more children in the home, and greater household tobacco smoke exposure. Caregivers assigned to the high risk cluster also reported poorer quality of life related to their child’s asthma as reflected by lower scores on the PACQLQ instrument, but this did not reach the level of significance (6.32 ± 0.98 vs. 5.78 ± 2.38 vs. 5.69 ± 1.16 for low vs. moderate vs. high risk, p=0.088).
Table 2.
Features of the caregiver participants, by cluster assignment. Data represent the number of participants (%) or the median (25th, 75th percentile).
| Feature | Low risk N=38 | Moderate risk N=56 | High risk N=35 |
|---|---|---|---|
| Race | |||
| White | 19 (50.0) | 32 (57.1) | 8 (22.9)*^ |
| Black | 19 (50.0) | 20 (35.7) | 20 (57.1) |
| American Indian | 0 | 0 | 4 (11.4) |
| Asian | 0 | 1 (18) | 0 |
| Unknown | 0 | 3 (5.4) | 3 (8.6) |
| Hispanic ethnicity | 1 (2.6) | 11 (19.6)* | 6 (17.1)* |
| Current asthma | 14 (36.8) | 23 (41.1) | 20 (57.1) |
| Current allergies | 25 (65.8) | 35 (62.5) | 28 (80.0) |
| Highest education | |||
| Did not complete high school | 2 (5.3) | 0 | 0 |
| High school diploma/GED | 4 (10.5) | 0 | 2 (5.7) |
| Technical training | 0 | 3 (5.4) | 2 (5.7) |
| Some college/Associate degree | 7 (18.4) | 18 (32.1) | 14 (40.0) |
| Bachelor’s degree | 25 (65.8) | 35 (62.5) | 17 (48.6)*^ |
| Combined household income | |||
| Don’t know | 0 | 4 (7.1) | 4 (11.4) |
| <$25,000/year | 2 (5.3) | 3 (5.4) | 4 (11.4) |
| $25,000–49,999/year | 9 (23.7) | 8 (14.3) | 9 (25.7) |
| $50,000–$99,999/year | 15 (39.5) | 13 (23.2) | 8 (22.9) |
| $100,000 or more | 12 (31.6) | 28 (50.0) | 10 (28.6) |
| Number of people supported by income | 3 (3, 5) | 4 (3, 5) | 4 (2, 5) |
| Below poverty threshold | 7 (18.4) | 5 (8.9) | 7 (20.0) |
| Household features | |||
| Number of child siblings in the home | 1 (0, 2) | 1 (1,2) | 2 (1, 2)* |
| Visible mold (past 12 months) | 2 (5.3) | 3 (5.4) | 4 (11.4) |
| Tobacco smoke in the home | 0 | 1 (18) | 6 (17.1)*^ |
| Cat in the home | 4 (10.5) | 6 (10.7) | 2 (5.7) |
| Dog in the home | 12 (31.6) | 19 (33.9) | 12 (34.3) |
p<0.05 vs. low risk,
p<0.05 vs. moderate risk
Preschool child features at baseline.
Features of the preschool children are shown in Table 3. Children from low risk and moderate risk caregivers had similar demographic features, medical histories, controller medications, daycare attendance and allergic features. However, children from high risk caregivers were significantly more likely to have experienced a prior intensive care unit admission for wheezing and also had sensitization to more aeroallergens (Table 3). Preschool children from high risk caregivers also had more respiratory symptoms triggered by tobacco smoke or allergens according to caregiver report. The significant aeroallergens that differed between the clusters included dog dander (% with sensitization, 7.9 vs. 16.1 vs. 30.3% for low risk vs. moderate risk vs. high risk, p=0.043), cat dander (2.6 vs. 5.4 vs. 30.3%, p<0.001), and cockroach (2.6 vs. 7.1 vs. 30.3%, p<0.001). There were no differences in dust mite, mold, tree, grass or weed sensitization between clusters (data not shown). Preschool children in the high risk cluster also had more respiratory symptoms in the week prior to enrollment reflected by higher scores on the Child Symptom Questionnaire (2.68 ± 3.96 vs. 2.84 ± 4.49 vs. 4.20 ± 4.28 for low risk vs. moderate risk vs. high risk, p=0.041). Respiratory and asthma control reflected by TRACK questionnaire scores was not significantly different between groups (62.4 ± 20.4 vs. 62.3 ± 22.5 vs. 64.7 ± 21.2 for low risk vs. moderate risk vs. high risk, p=0.857).
Table 3.
Features of the preschool participants, by caregiver cluster assignment. Data were reported by caregivers and represent the number of participants (%) or the median (25th, 75th percentile).
| Feature | Low risk N=38 | Moderate risk N=56 | High risk N=35 |
|---|---|---|---|
| Age (months) | 32 (19, 45) | 30 (23, 45) | 30 (27, 48) |
| Male | 25 (65.8) | 35 (62.5) | 24 (68.6) |
| Age of wheezing onset (months) | 12 (5, 18) | 12 (6, 21) | 12 (9, 36) |
| Eczema (physician diagnosed) | 19 (50.0) | 31 (55.4) | 17 (48.6) |
| Healthcare utilization for wheezing (ever in lifetime) | |||
| Hospitalization | 20 (52.6) | 33 (58.9) | 16 (45.7) |
| Intensive care unit admission | 6 (15.8) | 17 (30.4) | 15 (42.9)* |
| Wheezing history (past 12 months) | |||
| Wheezing episodes | 4 (3, 6) | 5 (3, 7) | 4 (3, 7) |
| Systemic corticosteroid bursts | 2 (1, 4) | 2 (1, 4) | 3 (1, 4) |
| Wheezing triggers | |||
| Exercise | 16 (42.1) | 26 (46.4) | 15 (42.9) |
| Upper respiratory infections | 32 (84.2) | 54 (96.4) | 31 (88.6) |
| Cold air | 12 (31.6) | 20 (35.7) | 14 (40.0) |
| Tobacco smoke | 2 (5.3) | 6 (10.7) | 8 (22.9)* |
| Allergens | 18 (47.4) | 41 (73.2)* | 25 (71.4)* |
| Daily controller medications | |||
| Inhaled corticosteroid | 21 (55.3) | 29 (51.8) | 14 (40.0) |
| Long-acting beta-agonist | 3 (7.9) | 4 (7.1) | 4 (11.4) |
| Montelukast | 5 (13.2) | 9 (16.1) | 5 (14.3) |
| Daycare attendance | |||
| Attended during first 12 months | 20 (52.6) | 23 (41.1) | 12 (34.3) |
| Current attendance | 32 (84.2) | 47 (83.9) | 23 (65.7) |
| Allergic features | |||
| Serum IgE (kU/L) | 97 (26, 186) | 58 (14, 138) | 52 (19, 418) |
| Blood eosinophil count (per microliter) | 292 ± 281 | 302 ± 245 | 250 ± 197 |
| Any aeroallergen sensitization | 11 (28.9) | 16 (28.6) | 15 (42.9) |
| Multiple aeroallergen sensitization | 10 (26.3) | 8 (14.3) | 12 (34.3)^ |
| Number of positive aeroallergens (of 12) | 1 ± 2 | 1 ± 2 | 2 ± 3*^ |
p<0.05 vs. low risk,
p<0.05 vs. moderate risk
Caregiver outcomes at 6 months.
T-scores for the caregiver-reported outcome measures of mental and social health at 6 months are shown in Table 4. At 6 months, caregivers assigned to the high risk cluster continued to report worse life satisfaction, meaning and purpose, and emotional support and higher social isolation, depression, anger, perceived stress, and anxiety. Outcome measures overall were stable for each group, although some regression to the mean in the outcomes measures was noted (Table 4). Repeating the cluster analysis with 6-month data also confirmed the stability of the original clusters, with 80%, 75%, and 75% of caregivers correctly re-assigned to the low risk, moderate risk, and high risk cluster, respectively.
Table 4.
Patient reported outcome measures in caregivers at 6 months, by baseline cluster assignment. Data represent the mean T-score for each instrument ± standard deviation (SD), the change from baseline (follow up score minus baseline score) shown as median (25th, 75th percentile), or the number of participants (%).
| Outcome measure | Direction of risk | Low risk N=38 | Moderate risk N=56 | High risk N=35 |
|---|---|---|---|---|
| Life Satisfaction score Change from Baseline |
Lower = worse | 61.7 ± 9.2 3.0 (−0.3, 8.7) |
57.8 ± 8.6 0.4 (−4.0, 4.6) |
48.8 ± 8.9*^ 1.3 (−3.5, 6.1) |
| Meaning and Purpose score Change from Baseline |
Lower = worse | 64.3 ± 3.0 0 (0, 0) |
58.5 ± 7.3* 0 (−5.2, 5.5) |
52.8 ± 7.2*^ 1.1 (−2.6, 5.8) |
| Emotional Support score Change from Baseline |
Lower = worse | 60.9 ± 2.9 0 (0, 0) |
56.6 ± 7.1* 0 (−2.9, 0) |
51.0 ± 9.4*^ 0 (−3.1, 5.7) |
| Social Isolation score Change from Baseline |
Higher = worse | 39.5 ± 5.9 0 (0, 5.9) |
45.4 ± 6.6* 0 (−5.2, 2.3) |
53.2 ± 8.6*^ 0 (−6.0, 3.4) |
| Depression score Change from Baseline |
Higher = worse | 41.5 ± 2.7 0 (0, 0) |
46.6 ± 6.9* 0 (0, 2.6) |
53.0 ± 8.7*^ −1.8 (−8.2, 1.5) |
| Anger score Change from Baseline |
Higher = worse | 38.7 ± 7.0 0 (−5.9, 3.9) |
47.5 ± 8.6* −2.1 (−8.5, 2.1) |
54.0 ± 8.0*^ −3.8 (−8.3, 4.3) |
| Perceived Stress score Change from Baseline |
Higher = worse | 48.4 ± 7.0 3.0 (−4.0, 7.0) |
53.3 ± 7.6* −2.0 (−7.0, 2.0) |
58.9 ± 6.3*^ −1.5 (−7.0, 1.0) |
| Anxiety score Change from Baseline |
Higher = worse | 46.0 ± 7.3 0 (0, 7.6) |
50.9 ± 8.2* −1.9 (−11.1, 5.0) |
59.0 ± 5.6*^ −0.2 (−5.1, 1.8) |
p<0.05 vs. low risk,
p<0.05 vs. moderate risk
At 6 months, caregivers originally assigned to the high risk cluster also reported significantly poorer quality of life related to their child’s asthma at 6 months (Figure 1A). Poorer quality of life was associated with lower general life satisfaction T-scores (Figure 1B), higher social isolation T-scores (Figure 1C), and higher perceived stress T-scores (Figure 1D) but was not associated with the other measures of caregiver mental and social health (data not shown).
Figure 1.
(A) Pediatric Asthma Caregiver Quality of Life Questionnaire (PACQLQ) scores at 6 months, by cluster assignment, and association of PACQLQ scores at 6 months with caregiver (B) life satisfaction, (C) social isolation, and (D) perceived stress T-scores. Dashed lines indicate the 95% confidence interval of the regression line.
Preschool child outcomes at 6 months.
At 6 months, preschool children from the high risk cluster continued to have more frequent respiratory symptoms reflected by higher Child Symptom Questionnaire scores (Figure 2A). Higher Child Symptom Questionnaire scores were associated with poorer caregiver quality of life (Figure 2B). TRACK scores of respiratory and asthma control did not reach the threshold of significance (74.6 ± 18.7 vs. 69.0 ± 20.6 vs. 61.2 ± 23.6 for low risk vs. moderate risk vs. high risk, p=0.069) but lower (i.e., worse) TRACK scores were associated with higher (i.e., worse) Child Symptom Questionnaire scores (r=−0.492, p<0.001) and lower (i.e., worse) caregiver quality of life scores (r=0.465, p<0.001). The percentage of children with TRACK questionnaire scores below 80 at 6 months was also not significantly different between groups (54% vs. 61% vs. 68%, p=0.563).
Figure 2.
(A) Child Symptom Questionnaire scores at 6 months in preschool children, by caregiver cluster assignment, (B) association of Children Symptom Questionnaire scores with Pediatric Asthma Caregiver Quality of Life Questionnaire (PACQLQ) scores, and children with (C) any wheezing episode and (D) an outpatient visit for wheezing by 6 months. Dashed lines indicate the 95% confidence interval of the regression line.
By 6 months, approximately 53% of preschool participants overall experienced one significant wheezing episode, defined as at least 24 hours of wheezing requiring treatment with albuterol. The percentage of children with a wheezing episode was significantly higher in the high risk cluster (Figure 2C). Prednisone use as instructed by the written asthma action plan was not significantly different between clusters (% of episodes treated with prednisone, 68% vs. 45% vs. 59% for low vs. moderate vs. high risk, p=0.302). Emergency Department utilization for the wheezing episode was also not significantly different between clusters (% seeking emergency care, 30% vs. 39% vs. 36% for low vs. moderate vs. high risk, p=0.796), but preschool children from high-risk caregivers were significantly less likely to see an outpatient physician for management of the wheezing episode (Figure 2D).
Discussion
In this study, we identified three clusters of preschool caregivers with differing patient-reported outcome measures of mental and social health. Consistent with our hypothesis, a cluster of caregivers at highest risk for poor mental and social health outcomes was identified which also had the poorest caregiver-related quality of life. This cluster was distinguished by other social determinants of health, namely non-White race, Hispanic ethnicity, lower educational attainment, more children in the home, and more household tobacco smoke exposure. Mental and social health outcomes were essentially unchanged in high risk caregivers at 6 months. Preschool children from these high risk caregivers also had more frequent respiratory symptoms and a higher occurrence of any wheezing episode, but lesser outpatient physician utilization for wheezing management. Collectively, these findings highlight the dynamic interplay between caregiver mental and social health and respiratory outcomes in preschool children. The findings also argue for routine assessment of mental and social health in caregivers of preschool children to promote health equity and improve respiratory outcomes.
Although the concept of “caregiver burden” is not new, to our knowledge, this is the first study to utilize a battery of validated, patient-reported outcome measures of mental and social health in caregivers of preschool children with recurrent wheezing. Other studies have evaluated caregivers’ functional status15 and cumulative maternal stress and depression16, 22 and similarly found altered caregiver emotions, concerns and experiences during acute asthma exacerbations and increased frequency wheezing illnesses in preschool offspring from caregivers with more stress and depression. Similarly, although mental and social health were not directly measured, a European cohort of preschool children with wheezing observed lower (i.e., poorer) caregiver asthma-related quality of life in children with severe versus mild-to-moderate wheezing.14 In that same study, preschool children with severe wheezing also had more mothers who smoked during pregnancy, a higher presence of urinary cotinine, more environmental allergies, and poorer symptom control.14
The associations we observed between social determinants of health and wheezing outcomes in preschool children are also consistent with previous studies. According to the Centers for Disease Control and Prevention, there are five broad determinants of health that influence health equity, including genetics, behavior, environmental and physical influences, medical care and social factors.23 Social factors in particular are often overlooked. For example, a separate study of preschool children with recurrent wheezing noted that children at highest risk of social vulnerability (defined by a composite measure of ethnicity, race, household educational attainment and household poverty) had more severe symptoms during upper respiratory infections and more severe exacerbations despite supervised medical care.24 Caregivers of these children also lived in poorer housing conditions and reported significantly poorer quality of life.24 Furthermore, Black and Hispanic children have more persistent wheezing during the preschool years and increased asthma incidence at age 11 years in neighborhoods of all income levels.25 National surveillance data also confirm racial disparities in healthcare utilization for wheezing and asthma mortality in children.26 However, other studies have shown that racial disparities in healthcare utilization for asthma are mediated by social, economic, and environmental factors, presenting opportunities for intervention.27–29 These factors include, but are not limited to, lack of economic stability, housing inequality, limited access to quality education and health care, higher exposure to pollution and tobacco, and inaccessibility to quality food and medical care. These factors are also not limited to Black and Hispanic communities but are also present in densely populated inner cities with low-income families, neighborhoods, and schools.30 For example, inner cities usually suffer from spatial inequality, which influences asthma and respiratory outcomes in children.31–35
In the present study, we did not observe differences in emergency department utilization between groups. However, the sample size was relatively small, and emergency department utilization was collected as a binary variable and not as a utilization rate. Emergency department utilization for asthma is also quite complex and can be associated with other factors such as comorbidity36 and food allergy.37 Perceptions of asthma control may also differ in vulnerable populations.38 In contrast, the low percentage of children from high risk caregivers seeking outpatient care for wheezing in the present study was striking but also consistent with previous work. A recent analysis of claims from three states found that children who had primary care follow-up visits within 14 days after an asthma-related emergency department visits were more likely to have commercial insurance.39 In that same study, children with primary care follow-up visits also had lower rates of subsequent emergency department revisits.39 Other studies have also shown that families of children with asthma who routinely use the emergency department for healthcare have to travel further distances for outpatient care and have poorer quality of life.40 Similarly, an analysis of children enrolled in the California Medicaid program found that Black children had a higher ratio of emergency department to outpatient visits that was more pronounced in neighborhoods with median household income below the 25th percentile and neighborhoods with high poverty.41
Strengths of the present study include the inclusion of infrequently studied caregiver/preschooler dyads, the characterization of enrolled caregivers with a battery of psychometrically sound patient-reported outcome measures of mental and social health, and the longitudinal study design. Nonetheless, this study does have limitations. First, our study design focused on individual versus community-level variables, and therefore did not adequately assess all of the variables in the World Health Organization’s conceptual framework for social determinants of health, including structural determinants (i.e., governance, macroeconomic policies, housing policies, and public policies), racism, material circumstances such as the neighborhood features and food insecurity, and psychosocial factors such as childhood adversity and community violence.42 Although we attempted to standardize care during exacerbations with the provision of asthma action plans and rescue medications, access to healthcare (and access to an outpatient care provider) may still have influenced our results. Indeed, it is notable that so many children from high risk caregivers had a previous intensive care unit for wheezing, yet were not receiving preventative controller medications. In those patients with adequate preventative healthcare access, we also cannot exclude systemic racism which may have influenced care approaches and resulted in more frequent respiratory symptoms in high risk children. The effectiveness of current educational strategies to meet all patient and family needs is another consideration. For example, the asthma action plan instructs caregivers to administer medications, but we previously observed greater fear of administering rescue medication in caregivers at highest risk of social vulnerability.24 This study was also conducted at a single academic medical center and may have inadvertently selected for a unique group of caregivers with high motivation who were willing to participate in a longitudinal research study.
In summary, the results of this study demonstrate differences in patient-reported outcome measures of mental and social health in caregivers that are associated with caregiver quality of life and wheezing outcomes in preschool children. Caregivers at highest risk for poor mental and social health had little to no improvement in these reported outcomes by 6 months and were further distinguished by several social determinants of health. Although validation studies are warranted, these findings highlight opportunities for interventions with caregivers that may improve quality of life and respiratory-related outcomes in preschool children and eliminate health inequities. In particular, more effective tools, strategies, and procedures are needed for educating all families about wheezing in this age group.
Highlights Box.
What is already known about this topic?
Preschool children rely on their caregivers for recognition and management of their respiratory symptoms. The mental and social health of caregivers may influence the caregiver’s ability to perform these roles for their preschool children.
What does this article add to our knowledge?
Preschool caregivers with the poorest mental and social health had disparities in other social determinants of health and the poorest quality of life. Their preschool children had more symptoms and wheezing over 6 months with lesser outpatient care.
How does this study impact current management guidelines?
Caregiver mental and social health is associated with social determinants of health and respiratory outcomes in preschool children. Mental and social health assessments in caregivers are warranted to promote health equity and improve wheezing outcomes in preschool children.
Acknowledgments
This study was supported by: R01 NR017939, K24 NR018866, and UL1 TR002378
Abbreviations
- PACQLQ
Pediatric Asthma Caregiver’s Quality of Life Questionnaire
- PROMIS
Patient-Reported Outcomes Measurement Information System
- TRACK
Test for Respiratory and Asthma Control in Kids
Footnotes
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Author Disclosures: Anne M. Fitzpatrick, Badiallo Diani, Dio Kavalieratos, Alison Corace, Carrie Mason, Morgan Van Dresser, and Jocelyn R. Grunwell have no disclosures pertaining to the submitted work.
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