Parental Decision Making Associated with Pediatric Emergency Department Use for Asthma

Introduction

Asthma is one of the most common chronic diseases in children with an overall prevalence rate of 8.3%. Asthma disproportionately affects disadvantaged minority children with prevalence rates as high as 20% ¹ and increased rates of asthma related morbidity and mortality. Overutilization of Emergency Department (ED) services and underutilization of primary care preventive asthma care services for this high risk population is a well-recognized problem ^2-4. In the U.S., African American children have a 2.6 fold increase in asthma related ED visits and a 3 fold increase in hospitalizations when compared to Caucasian children ⁵. Furthermore, African American children are 6 times more likely to die from asthma than Caucasian children age 5-18 living in Maryland ⁶. In addition to the toll that asthma imparts on children and families suffering from this chronic disease, it also has a significant economic burden on society with estimated costs of over $272 million/year for pediatric asthma related ED visits by children on Medicaid in the U.S.in 2010 ⁷. In 2014, the estimated cost of ED care for Medicaid insured children in Maryland was $5,444,000 ⁷. Young, urban children on public insurance have the highest frequency use (as defined by >4 visits in 12 months) of the ED for asthma care. ^2,8. Although asthma exacerbations in some children are severe enough to require emergency services, studies have shown that high frequency use of the ED for non-acute asthma management is common ⁹.

Parental decision making about when to seek ED care for a child’s asthma is complex. Many factors have been shown to contribute to this decision making, such as the perception of decreased time to treatment ¹⁰, lack of/limited access to primary care both during and after-hours ^3,11,12, lack of insurance, a greater sense of trust in the ED ¹³ and inappropriate caregiver assessment of asthma severity and/or inappropriate use of albuterol at home ¹⁴. In addition, psychological factors such as caregiver depression and stress have shown to be predictors of increased ED utilization ¹⁵.

The objective of this study was to examine caregiver factors associated with the decision to use the ED for their child’s asthma care in a group of low-income, inner-city children with persistent and uncontrolled asthma.

Methods

Study design and population

This manuscript presents baseline data on 150 participants enrolled in an ongoing randomized controlled trial testing the effectiveness of an ED and home-based environmental control intervention on children with frequent ED visits for asthma. The Johns Hopkins Medical Institutional Review Board approved the study protocol. Children were recruited, consented and enrolled during an ED visit for treatment of an acute asthma exacerbation (index ED visit). Data were collected from August 2013 through June 2015. Inclusion criteria were physician diagnosed persistent asthma and uncontrolled asthma based on current national asthma guidelines ¹⁶, 2 or more ED asthma visits or ≥ 1 hospitalization during the past 12 months and residence in the Baltimore metropolitan area. Children were excluded if they had significant other non-asthma respiratory conditions (eg. cystic fibrosis). Of the 177 eligible children with asthma who were screened in the ED, 150 children, aged 3 to12 years were enrolled. After written informed consent was obtained from each child’s primary caregiver/legal guardian and verbal assent from children over age 8 years, children were randomly assigned to either ED-home based intervention or an attention control group in a 1:1 ratio. During the index ED visit, surveys were administered via face-to-face interview asking demographic characteristics such as age, gender and race of the child and age, relationship to child, educational, employment and income level of the primary caregiver.

Measurement of variables

Sociodemographic and Health Characteristics

Baseline survey data included demographic characteristics including child age, gender, race/ethnicity and caregiver age, educational level, income and employment status. Symptom days over the past two weeks and symptom nights over the past 4 weeks, activity limitation and short acting βeta₂agonist use over the past week were also ascertained during the baseline interview. Healthcare use for asthma was based on caregiver report of number of visits for routine asthma care and ED asthma visits in past 3 months. Prior ICU admission for asthma was verified by medical record review.

Caregiver Decision for Emergency Department Use

In order to ascertain decision making to use the ED for asthma treatment, caregivers were asked to rate eleven items in order of importance to their decision. Specific answer choices were developed based on previous studies investigating factors associated with ED use for asthma care and other medical conditions ^3,17 and supported by anecdotal reports from the pediatric ED staff. Items included patient factors of low resources, access to other health care services and perceptions of severity of illness ¹⁸. Specifically, caregivers were asked “What is the most important thing that impacts your decision in deciding when to take your child to the emergency room?” The eleven responses were: “No improvement after albuterol treatment at home, I trust ER doctors for asthma care, It works better with my schedule, I could not get an appointment the same day at the doctor’s office, I have no insurance, I always use the ER, I was scared, I like the ER doctors better, ER doctors know more about my child’s asthma than the regular doctor and Other”. Caregivers rated their responses in terms of importance with up to four possible factors chosen i.e. 1^st most important, 2^nd, 3^rd and 4^th most important.

Asthma Morbidity and Healthcare Utilization

Asthma morbidity measures included the number of symptom days and nights over the past 2 weeks based on current National Asthma Education Prevention Program (NAEPP) guidelines ¹⁶. Caregiver’s were asked to rate the child’s asthma control over the past 4 weeks into 3 categories including “controlled”, “not controlled” or “unsure”. Healthcare utilization measures included the number of asthma ED visits, hospitalizations for asthma, and primary care provider (PCP) visits for routine asthma care reported over the past 3 months. Office urgent care visits for asthma were not included in ED asthma visit counts in order to target high cost utilization. History of any lifetime ICU admission for asthma was initially based on caregiver report, but later confirmed with electronic medical record (EMR) review. High concordance was found between caregiver report and EMR for lifetime ICU admission (83% agreement). As a proxy of appropriate controller medication use or medication adherence, ratios of controller to total asthma medications or HEDIS measures were calculated from pharmacy fill data over the previous 12 months using the total number of medication canisters for any controller medication as the numerator and the total number of controller and SABA canisters filled as the denominator ¹⁹. Ratios range from 0 (no controller medication use) to 1.0 (ideal controller medication use) and ratios of 0.50 or higher have been associated with decreased asthma morbidity and increased quality of life ¹⁹.

Statistical Analysis

Initial findings describe the frequency of each reason and distribution of the number of reasons the caregiver identified. Hierarchical cluster analysis was then performed using between-group cluster method with Jaccard solution to identify unique constructs formed by correlated parental reasons. The Jaccard measure did not consider two reasons which a caregiver did not list as necessarily similar, but rather considered reasons similar only when a caregiver listed both. Results contributed to identification of three initial cluster formations. Final groupings and description of each cluster formation (Cluster 1 (Urgency), Cluster 2 (Preference for Use of ED) and Cluster 3 (Access to care) was based on additional review of both statistical and content relatedness by two co-investigators. Reasons listed by caregiver may have been multifaceted and not mutually exclusive to a particular cluster.

Stepwise logistic regression analyses was then performed to determine the combination of factors that increased the odds of identifying with a particular cluster. Analyses included examination of two way interaction effects to assess potential factor dependencies on relationship to odds of cluster identification. When a cluster included reason(s) indicated by nearly all caregivers, extended analyses was not performed as power to detect significant differences was reduced due to lack of variation. All analyses were performed using SPSS for Windows V22.0 ²⁰.

Results

A description of the study sample is presented in Table 1. Child participants were primarily African American (95%) male (64%), with a mean age of 6.4 years (SD 2.7 years). Caregivers were primarily mothers (93%), single (85.2%), had a mean age of 31.3 years (SD 7.3 years), and most were high school graduates (81.3%). A majority of the participants had a household income of less than $30,000 a year (72.2%).

Table 1.

Examination of caregiver/patient characteristics in relation to reason for using the ED for their child’s asthma care.

Valid column % or mean (SD)		Reason for using the ED for their child’s asthma care (not mutually exclusive):
		Urgency			Prefer ED			Access to Care Issues
	Overall	Yes	No	P-value	Yes	No	P-value	Yes	No	P-value
	N=150	N=137	N=13		N=55	N=95		N=44	N=106
Child male	64.0%	64.2%	61.5%	P=0.847	67.3%	62.1%	P=0.525	70.5%	61.3%	P=0.289
Child Age, yrs.	6.4 (2.7)	6.3 (2.7)	7.5 (3.1)	P=0.106	6.4 (2.8)	6.3 (2.7)	P=0.813	6.0 (2.5)	6.5 (2.8)	P=0.356
Caregiver Age, yrs.	31.3 (7.3)	31.1 (7.0)	33.8 (10.0)	P=0.238	30.8 (7.4)	31.7 (7.3)	P=0.488	31.8 (7.5)	31.2 (7.3)	P=0.608
Caregiver Education:				P=0.155			P=0.858			P=0.421
Some high school or less	18.7%	19.0%	15.4%		20.0%	17.9%		15.9%	19.8%
High school graduate	37.3%	35.0%	61.5%		34.5%	38.9%		31.8%	39.6%
Some college or more	44.0%	46.0%	23.1%		45.5%	43.2%		52.3%	40.6%
Caregiver Income:				P=0.011			P=0.101			P=0.141
<10,000	34.6%	31.4%	66.7%		42.6%	30.2%		32.3%	40.5%
10-29,000	37.6%	41.3%	0.0%		25.5%	44.2%		42.7%	24.3%
>=30,000	27.8%	27.3%	33.3%		31.9%	25.6%		25.0%	35.1%
SABA fills >=4	33.3%	32.8%	38.5%	P=0.681	34.5%	32.6%	P=0.811	27.3%	35.8%	P=0.310
Controller fills
HEDIS Ratio:				P=0.001			P=0.438			P=0.834
<0.50	64.0%	69.0%	15.4%		59.6%	66.7%		65.9%	63.2%
0.50-0.69	28.1%	24.6%	61.5%		28.8%	27.6%		25.0%	29.5%
>=0.70	7.9%	6.3%	23.1%		11.5%	5.7%		9.1%	7.4%
Atopic	81.4%	82.0%	75.0%	P=0.549	76.0%	84.4%	P=0.218	78.6%	82.7%	P=0.569
# Visits for routine asthma care (past 3 months):				P=0.562			P=0.708			P=0.245
None	47.3%	46.0%	61.5%		47.3%	47.4%		45.5%	48.1%
One	31.3%	32.1%	23.1%		34.5%	29.5%		25.0%	34.0%
Two or more	21.3%	21.9%	15.4%		18.2%	23.2%		29.5%	17.9%
# Times treated in ED for asthma (past 3 months):				P=0.525			P=0.477			P=0.415
None	24.2%	23.5%	30.8%		20.4%	26.3%		22.7%	24.8%
One	38.3%	37.5%	46.2%		44.4%	34.7%		31.8%	41.0%
Two or more	37.6%	39.0%	23.1%		35.2%	38.9%		45.5%	34.3%
ICU-ever confirmed	31.3%	32.1%	23.1%	P=0.502	27.3%	33.7%	P=0.415	18.2%	36.8%	P=0.025
Child uses his/her spacera	93.3%	92.6%	100%	P=0.418	93.9%	92.9%	P=0.835	92.3%	93.7%	P=0.772
Child uses his/her nebulizer	94.8%	94.2%	100%	P=0.539	100%	92.2%	P=084	93.8%	95.2%	P=0.536
Child uses his/her Inhaler	99.3%	99.2%	100%	P=0.910	98.1%	100%	P=.180	100%	99.0%	P=0.515

^aValid N (n=134 spacer; n=115 nebulizer; n=145 inhaler/puffer)

Perceived urgency as reason to use the ED

Urgency reason(s) to use the ED for their child’s asthma care was indicated by 91.0% of caregivers. No improvement in their child’s symptoms after albuterol treatment at home was reported by 79% of caregivers. Nearly 36% responded “I was scared”, and 15% reported running out of medicine. Almost all caregivers reported their child used a spacer (93%), nebulizer (95%) and inhaler (99%). It is unclear the order of albuterol administration methods, if a single administration method was used or how many treatments constituted a failure to respond to albuterol among those who reported no improvement after treatment at home.

A HEDIS score <0.50, indicating low controller medication use, was found in a significantly greater percentage of children whose caregiver reported an urgent reason(s) as the decision to use the ED for asthma care (69.0% vs. 15.0%, p<0.05). This in combination with reports of running out of medication (15%) further demonstrate areas for improved disease management and potential to reduce reliance on the ED for asthma care. As most caregivers indicated an urgent reason to use the ED, limited variation precluded further examination to determine whether a combination of factors correspond to increased odds of feeling “Urgency”.

Caregiver preference as reason to use the ED for asthma care

Preference to use the ED for asthma care was reported by 36.7% of caregivers. Reason(s) for preference included a sense of trust in the ED for asthma care (25%), a feeling that “Emergency room (ER) doctors know more about my child’s asthma than the regular doctor” (12%), and that they always use the ED for asthma care along with a general preference for ED doctors- “I like ER doctors better” (7%). Increased odds that caregiver prefers to use the ED for asthma care were multifaceted, but were not related to caregiver or child characteristics such as gender, age or caregiver education (as shown in Table 1). Higher odds of preferring the ED for asthma care were found when a previous ED visit (not multiple) for asthma care was reported in the past 3 months compared to none (OR=3.7, p<.=0.05), when household income <10k vs. >=10 k among caregivers whose child atopic (OR=7.2, p<0.05), with increased number of children in the household (OR=1.9, p<0.05), and for male compared to female children among caregivers who reported their “child’s asthma does not affect their ability to get or keep a job” (OR=10.5, p<0.05). Interestingly, gender differentials were not significant when caregiver reported child’s asthma affects their ability to get or keep a job (p>0.05).

Access to care as reason to use the ED for asthma care

Thirty one percent of caregivers reported access issues as a factor(s) in their decision to use the ED for asthma care. The most common reason reported was an inability to get a same day appointment with their primary care provider (24%). Few caregivers (6%) reported that using the ED for their child’s asthma care worked better with their work schedule. Lack of health insurance as a reason was reported by very few caregivers (0.7%) and likely a result of state mandated coverage requirements.

Increased odds of an access related issue was found in those whose child had a prior asthma related ICU admission (OR 3.72, P<0.05). Access to care was also more likely to be a reason for ED use among caregivers with higher education (some college or more vs. less) among caregivers with only one or two children (OR=7.8 and OR=4.1, respectively, p<0.05). Education became a less significant factor with more children in the household. The one to two child household dependency was also found in relation to caregiver age where each additional year of age increased the odds of access issues by 26% in those with one child (OR=1.26, p<0.05) and 14% in those with two children (OR=1.14, p<0.05). Caregivers who reported their child’s asthma did not affect their ability to obtain and maintain employment and who had a child who was a male were more likely to report access to care issues. (OR=3.4, p<0.05). (OR 3.72, P=0.05).

Discussion

Asthma is one of the top diagnoses associated with frequent ED visits in children ^2,21 yet factors associated with repeated use are not well understood. Our data indicate that the perception of urgency was the most common factor that influenced caregiver’s decision to use the ED for asthma care in a cohort of children with frequent asthma ED visits. Prior studies demonstrated urgency to be a less common factor in parents seeking care in in the ED in recent years over other non-urgent factors, such as limited access to their usual care provider during office hours and greater trust in the ED ¹³. Parental anxiety regarding their child’s respiratory status at home was the most likely factor associated with endorsement of “urgency” as a major factor in the decision to use the ED for care of asthma. The perception of urgency is complex, and the validity of the urgency or appropriateness of the utilization of the ED for the child’s index ED visit is unknown. It is unclear whether the urgency was reflective of a failed adequate respiratory response to appropriate dose and administration of home medication or under recognition of early symptoms of asthma which may have contributed to a poor response to medication treatment, ^14,22 or other factors. Despite urgency being the most common factor reported for ED asthma care, it is of interest that this same group has low controller medication use. This further highlights the complexity of home self-management of asthma including running out of rescue medication, over use of rescue medication and poor controller medication use (as reflected by low HEDIS scores) in a known group of high risk children. Of note is that lower income was significantly correlated with an increased sense of urgency and may reflect low resources to maintain adequate rescue and controller medication in the home for asthma to be well-controlled.

Frequent use of the ED by children overall has been associated with the high severity of illnesses and frequency of admission² and could contribute to the perception of urgency in this study population. Interestingly, this sense of urgency was not associated with the prior number of PCP or ED visits in the preceding three months or in children with prior intensive care unit (ICU) admissions. This perception of urgency was rather associated with reports of feeling scared and parental report of “no improvement after albuterol treatment” at home. Based on study enrollment criteria and HEDIS scores, it is known that these children are high risk, with persistent and poorly controlled asthma and raises further areas for investigation regarding medication usage, administration techniques, frequency of rescue medication use, recognition and avoidance of triggers, and rescue versus preventative medication use.

Nath and Hsia (2015) found that minority race, Medicaid insurance, younger age and arrival in the ED in the overnight hours had an increased odds of being an asthma related event that was potentially preventable. While it is not known if the index visits in this study were urgent versus non-urgent visits, some of the demographic characteristics, including minority race and Medicaid insurance are commonalities. Access to primary care continues to be identified as a problem, particularly as it relates to an ability to get a same day appointment. This has been supported by previous literature as a driver for use of the ED for both asthma and other conditions ^3,23 and particularly in Medicaid insured African American children living in urban environments ^3,11. Extended office hours and walk in visits in pediatric primary care may help alleviate some of these access to care issues and have been proven to decrease ED use in the general pediatric population ²⁴. It is not known to what extent caregivers attempted same day appointments, but even if there is a perception that they couldn’t see their primary care provider, this alone provides an area for improvement in health care service delivery and processes. The perception of trust in the ED, a common reason for using the ED for asthma care, could be impacted by high quality, family centered asthma care. This has been shown by Brousseau et al (2007) who found that this bond between patient and provider could decrease ED utilization, particularly for non-urgent ED use.

Lack of insurance being a reason for seeking ED care for asthma played the most minor role of the ten reasons reported (<1%) and was not significant and not surprising since 94% were covered under Medicaid insurance and 99% reported any health insurance. This is supported by Stockwell et al (2010) and Pines et al (2011) who cited a need to look closer at other factors when considering decision making regarding the use of the ED for pediatric care. A lack of financial responsibility for ED utilization in Medicaid insured children may contribute to increased frequency of ED utilization and underutilization of primary care for non-urgent asthma care when compared to privately insured patients who may be faced with co-pays for non-urgent ED visits.

This investigation of reasons caregivers choose to use the ED for pediatric asthma care is multifaceted and complex. Caregiver home asthma management education and symptom management, improved relationships with primary care providers, improved access and continuity of primary care can provide a basis for further study and opportunities for intervention and improvement in pediatric asthma care.

Table 2.

Reasons that impact caregivers decision the most in deciding when to take their child to the emergency room listed in order of most related to a prior reason(s) within cluster [e.g. reasons 1 & 8 formed the 1st stage of cluster 1 (most related)]

Cluster 1: Urgency (% caregivers indicated reason)	Cluster 2: Prefer the ER (% caregivers indicated reason)	Cluster 3: Access (% caregivers indicated reason)
(78.7%) No improvement after albuterol treatment at home (36.0%) I was scared (14.7%) I ran out of medicine	(7.3%) I like ER doctors better (12.0%) ER doctors know more about my child’s asthma than the regular doctor 7. (7.3%) I always use the ER 2. (25.3%) I trust doctors in the ER for asthma care	3. (6.0%) It works better with my work schedule 5. (0.7%) I have no insurance so I go to the ER 4. (24.0%) I could not get an appointment the same day at the doctor’s office

# of reasons listed in Cluster 1		# of reasons listed in Cluster 2		# of reasons listed in Cluster 3
None	8.7%	None	63.3%	None	70.7%
One	58.0%	One	24.7%	One	28.0%
Two	28.7%	Two	8.7%	Two	1.3%
Three	4.7%	Three	3.3%	Three	0.0%
		Four	0.0%