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Providers Underestimate Symptom Severity Among Urban Children With Asthma
Jill S. Halterman, MD, MPH;
H. Lorrie Yoos, PhD;
Jeffrey M. Kaczorowski, MD;
Kenneth McConnochie, MD, MPH;
Robert J. Holzhauer, MD;
Kelly M. Conn, BS;
Sherri Lauver, MS;
Peter G. Szilagyi, MD, MPH
Arch Pediatr Adolesc Med. 2002;156:141-146.
ABSTRACT
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Background Guidelines recommend that children with mild persistent to severe persistent
asthma receive maintenance anti-inflammatory medications. However, providers
may not be aware of the severity of their patients' symptoms. The underestimation
of severity may contribute to poor adherence to asthma care guidelines.
Objectives To describe the use of preventive medications among a group of urban
children with mild persistent to severe persistent asthma and to evaluate
the degree to which their health care providers are aware of their asthma
severity.
Design Children (ages 4-6 years) from urban schools in Rochester, NY, were
eligible if their parents reported mild persistent to severe persistent asthma
symptoms. Each child's health care provider was asked to assess the child's
asthma severity and use of medications based both on their knowledge of the
child and review of the medical record. Parent and provider assessments were
compared. Bivariate and regression analyses were used to identify factors
associated with concordant classifications of asthma severity.
Results Ninety children with parent-defined mild persistent to severe persistent
asthma participated (64% boys, 67% black, 73% receiving Medicaid). Only 40%
of the children were described accurately by their providers as having mild
persistent to severe persistent asthma, and only 50% of the total had been
prescribed maintenance medications. Thirty-six percent of families reported
that their child used maintenance medications daily. In contrast, most of
the children who were classified by their provider as having mild persistent
to severe persistent asthma were prescribed a maintenance medication (83%),
and 58% used them daily. Sociodemographic characteristics and asthma severity
were not associated with provider accuracy.
Conclusions Most children in this study were not accurately classified by their
providers as having mild persistent to severe persistent asthma and had not
been prescribed maintenance medications. When providers were aware of their
patient's asthma symptoms, most of the children were prescribed maintenance
medications. Attempts to improve adherence to asthma guidelines should take
into consideration provider underestimations of asthma severity.
INTRODUCTION
ASTHMA IS the most common chronic childhood illness,1-2
and childhood asthma morbidity and mortality are increasing despite improvements
in asthma therapy.3-6
The burden of asthma is particularly significant for young children living
in the inner city.4, 7-11
Recent guidelines from the National Heart, Lung, and Blood Institute (NHLBI)12 recommend daily use of maintenance medications for
all children with mild persistent to severe persistent asthma. However, many
studies have shown that inadequate therapy with maintenance medications is
common, particularly for poor urban children.13-17
Although the reduction of asthma morbidity has been targeted as a national
health care objective,18 a recent study showed
that 74% of children living in the United States were receiving inadequate
maintenance therapy for asthma.19
The reasons for inadequate maintenance therapy for asthma are not clear.
Studies have considered many factors that may affect adherence, such as the
complexity of the disease and day-to-day variability of symptoms20;
patient factors such as health beliefs, family stress, and concerns about
medication adverse effects21-22;
physician factors such as lack of familiarity or agreement with guidelines23-25; and the patient-physician
relationship.22, 26-27
All of these potential factors assume that the health care provider is aware
of the child's asthma symptoms and asthma severity and has the opportunity
to prescribe maintenance medications.
In a prior study, we found, among a group of children with significant
asthma, that few of even the most symptomatic children had any contact with
a health care provider during a 3-month symptom-monitoring period.28 This finding suggests that providers often may not
be aware of the severity of their patients' symptoms, and that provider underestimations
of asthma severity may contribute to poor adherence to asthma care guidelines.
The objectives of this study were to describe the use of preventive
medications among a group of urban children with mild persistent to severe
persistent asthma and to evaluate the degree to which their health care providers
were aware of their asthma severity.
PARTICIPANTS AND METHODS
The University of Rochester Medical Center (Rochester, NY) institutional
review board approved the study protocol. The sample for this study consisted
of children (aged 4-6 years) from 33 schools in urban Rochester who were enrolling
in a longitudinal clinical trial. Children were identified with an asthma
diagnosis from a school-based health screening survey administered to all
children on school enrollment. Families who had indicated an asthma diagnosis
were contacted by telephone to assess the child's eligibility. Children were
eligible if they met symptom criteria for mild persistent to severe persistent
asthma (based on NHLBI guidelines),12 had access
to a telephone, and were not planning to leave the school district in the
following 6 months. According to a review of school records, 322 children
had asthma. Of these children, we were unable to reach 78 because of wrong
telephone numbers or disconnected telephones, 80 had mild intermittent asthma,
and 137 children had mild persistent or more severe asthma and were eligible.
We were able to obtain consent and enroll 92 of these children into the study,
for a total response rate of 67%.
Once a child was deemed eligible via telephone contact, the caretaker
was asked to complete a brief telephone survey that inquired about sociodemographic
characteristics, health care contacts, and medication use. Each caretaker
was asked to identify the primary health care provider who knew the child
best, and informed consent was obtained for contact with that provider.
The health care providers for each child enrolled in the study were
subsequently contacted and asked to complete a survey. Information about the
child's health care utilization, asthma severity, and medication use was obtained
using a written questionnaire. Providers were encouraged to impart information
based both on their personal knowledge of the patient and their review of
the medical record. For the 92 children who met eligibility requirements and
for whom informed consent was obtained, 90 provider surveys (from 55 different
providers) were returned for a provider response rate of 98%.
DEFINITIONS
Asthma Severity
All children enrolled in this study had symptoms of mild persistent
to severe persistent asthma based on our initial asthma screen. Children with
mild intermittent asthma were not eligible and were not involved further in
this study. Table 1 presents the
symptom criteria that were used (extrapolated from NHLBI guidelines12). Families reported the average number of symptomatic
days and nights with asthma symptoms per week during the past year. Eligibility
criteria required children to have either 3 or more days per week with asthma
symptoms or 3 or more nights per month with asthma symptoms. Families also
reported the frequency of rescue medication use, the number of acute office
and emergency department visits for asthma, and the number of hospitalizations
for asthma during the past year. Lastly, they were asked to comment on whether
or not they felt their child's primary care provider was aware of the severity
of the child's asthma symptoms.
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Table 1. Criteria for Eligibility*
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Providers were asked to independently rate the child's asthma severity
during the past year by choosing "mild intermittent," "mild persistent," "moderate
persistent," or "severe persistent" from a checklist of symptoms with NHLBI
definitions consistent with those used to define severity on the parent report.
We considered the parent's description of asthma symptoms as the "gold standard"
for each child. Therefore, if providers described the child as having either
mild persistent, moderate persistent, or severe persistent asthma symptoms,
they were considered to be accurate in their classification. Since National
guidelines recommend that all children with mild persistent or more severe
asthma receive maintenance medications, we did not attempt to distinguish
between these categories of severity. Providers were only considered to be
inaccurate if they defined the child as having mild intermittent asthma, because,
by inclusion criteria, none of the children had mild intermittent asthma according
to parent report.
Medications
Families were asked if their child used a medication every day to prevent
asthma symptoms. If they answered yes to this question, they were asked for
the name of the medication and the dosing regimen. We defined children as
using a maintenance medication if they described using a preventive anti-inflammatory
medication (inhaled corticosteroid, cromolyn sodium, or montelukast sodium).
Further, if they reported the use of a maintenance medication daily (in contrast
to sporadic use or use only with acute symptoms), they were considered to
have daily use of maintenance therapy.
Providers were similarly asked if they (or another member of their practice)
had prescribed a maintenance medication for the child. The type of medication
was documented along with the reason for the prescription. If a preventive
anti-inflammatory medication was reported, the child was considered to have
been prescribed a maintenance medication.
INDEPENDENT VARIABLES
Independent variables included age (4, 5, or 6 years), sex, race (defined
as white, black, or other), ethnicity (Hispanic or not Hispanic), and insurance
(Medicaid or other). Asthma severity measures included rescue medication use
(every day vs not every day), the number of acute office or emergency department
visits for asthma (<3 vs  3 during the past year) and the number of
asthma hospitalizations (0 vs 1 during the past year). Lastly, health
care factors included the time since the child's last office visit (>6 months
vs <6 months), and whether the family believed the provider was aware of
the frequency of the child's asthma symptoms.
ANALYSIS
We performed all analyses using SPSS version 10.0 software(Statistical
Product and Service Solutions 10.0; SPSS Inc, Chicago, Ill). Standard cross-tabulations
and  2 analyses were used to test for differences in proportions.
Logistic regression was used for multivariate analysis to identify factors
independently associated with accurate provider classifications of asthma
severity.
RESULTS
Table 2 presents the demographic
characteristics for the 90 children in this sample. Twenty-seven percent of
all of the children were 4 years old, and of the remaining children, there
were approximately equal numbers of 5- and 6-year-olds. Sixty-four percent
of the children were boys. The majority of the children in the sample were
black (67%), 8% were white, and 25% indicated other racial backgrounds. Thirty
percent of the children were described as having Hispanic ethnicity, and most
of the children (73%) had Medicaid insurance.
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Table 2. Demographic Characteristics of the Study Population
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Only 40% of the children were classified by their providers as having
mild persistent to severe persistent asthma. Since all of the children in
this study met criteria for mild persistent to severe persistent asthma based
on our screening survey, these providers were considered to be accurate in
their classification. The remaining 60% of children were inaccurately classified
by their providers as having symptoms consistent with mild intermittent asthma.
Table 3 presents the use
of maintenance medications among all the children in this sample and among
those children whose providers were accurate or inaccurate in their classification
of the child's asthma severity. Several findings are noted. First, the use
of maintenance medications was not common among children in this sample. Only
50% of all of the children were prescribed a maintenance medication, 41% of
families reported having a maintenance medication, and only 36% reported using
a maintenance medication daily. Second, the use of maintenance medications
among this group of children varied significantly depending on the accuracy
of their provider's severity classification. Among the children whose providers
were accurate in their classification of asthma severity (mild persistent
to severe persistent asthma), more were prescribed a maintenance medication
(83% vs 28%, P<.001), more families reported having
a maintenance medication at home (64% vs 26%, P<.001),
and more families reported the use of a maintenance medication daily (58%
vs 20%, P = .001) compared with children whose providers
were inaccurate.
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Table 3. Maintenance Medication Use by Provider Classification of Asthma
Severity*
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Table 4 presents the percentage
of children accurately classified by their providers, according to sociodemographic
characteristics, asthma severity, and health care factors. There were no differences
in provider accuracy by any of the sociodemographic characteristics, including
age, sex, race, ethnicity, or insurance type. Similarly, children who used
rescue medications daily were not more likely to be described as having mild
persistent to severe persistent asthma by their providers compared with those
children with less frequent use of rescue medications. Further, there was
no difference in provider accuracy among those children with 3 or more acute
visits for asthma or with 1 or more hospitalization for asthma during the
past year compared with children with fewer health care contacts.
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Table 4. Accurate Provider Classification of Mild Persistent to Severe
Persistent Asthma by Sociodemographic Characteristics, Asthma Severity, and
Health Care Factors*
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The only factors that were found to be related to provider accuracy
were health care factors. Those children who had been seen in the office within
the past 6 months were more likely to be correctly classified by their provider
(47% vs 25%, P = .04) compared with children who
had not had a visit to the office in the past 6 months. Similarly, if the
family reported that they believed the provider was aware of the frequency
of their child's asthma symptoms, the provider was more likely to be accurate
in their severity classification (46% vs 20%, P =
.03).
A logistic regression was subsequently performed to identify factors
independently associated with accurate provider classifications of asthma
severity. All covariates included in the model are presented in Table 5. None of the factors were found to be associated with accurate
provider classifications of asthma severity in this analysis.
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Table 5. Factors Independently Associated With Accurate Provider Classifications*
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COMMENT
All of the children in this study had asthma symptoms consistent with
national criteria for mild persistent to severe persistent asthma. While national
guidelines now uniformly recommend daily maintenance medications for children
with this level of asthma severity, only a third of children in this sample
were receiving such medications. The findings from this study suggest that
adherence at the patient level is a problem, since 50% of the children were
prescribed a maintenance medication but only 36% of families reported the
daily use of such medications. We also found, however, that provider underestimations
of asthma severity likely contributed to inadequate therapy among the children
in this sample. Most of the providers were not aware of the severity of their
patients' asthma symptoms. Among the children whose providers correctly classified
their asthma severity, prescriptions for maintenance medications were quite
common (83%). This suggests that these providers are aware of national guidelines
for asthma management and that they are using these guidelines to direct patient
care.
A significant barrier to providing appropriate care may, therefore,
occur at the level of provider-patient communication. The families interviewed
for this study were able to categorize their child's asthma severity by answering
simple questions based on NHLBI guidelines. For some reason, this information
had not reached the health care providers in the majority of instances. Interestingly,
many families were aware of their provider's knowledge or lack of knowledge
about the frequency of the child's asthma symptoms. Those providers who were
felt to be "aware" by the families were more likely to be accurate in their
severity classifications.
The reasons for this communication gap between providers and families
are not clear. Prior work from our group has suggested that families may not
make contacts with health care providers to notify them of symptoms even when
these symptoms are occurring daily.28 Some
families may accept that their children with asthma will experience a certain
amount of morbidity and may be unaware of effective medications that are available
to prevent asthma symptoms. Other families may be concerned about medication
side effects.20-21 Further, asthma
symptoms, and even hospitalizations, may occur without a primary care provider's
knowledge.28 Thus, the lack of preventive therapy
could be related to communication barriers and problems integrating health
services. It also is possible that some providers are not screening patients
with specific questions about symptom severity, and are thus missing patients
with significant asthma even when contact occurs.
A lack of recent contact with health care providers may also play a
role. We found that children who had been seen by their primary providers
in the previous 6 months were more likely to have been classified accurately.
Similarly, Diaz et al29 found that children
who had seen a physician in the previous 6 months were more likely to use
a daily anti-inflammatory medication. These findings suggest that regular
contact with providers could improve adherence to preventive therapy. However,
all children in this sample had a primary care provider, and most of them
had an office visit in the past 6 months.
Regardless of the reasons, providers cannot provide appropriate care
for their patients with asthma unless they are aware of the frequency of their
asthma symptoms, and thus are able to accurately classify their asthma severity.
Future strategies to improve asthma care might include specific screening
questionnaires about asthma symptoms that could be administered either through
the provider's office or through the schools, as was done in this study. Further,
families could be better educated about the availability of effective asthma
therapies and the need to inform their health care providers of the frequency
of their child's symptoms. Lastly, improved tracking of patients with asthma,
more frequent scheduled visits with care providers for "tune-ups," and better
access to preventive care might help to decrease barriers in communication
and improve adherence to guidelines.
There are some potential limitations to this study. First, we considered
the caretaker's description of the child's asthma symptoms to be the gold
standard for our definition of asthma severity. We did not obtain objective
measures of severity such as peak flow readings or spirometry. However, the
NHLBI criteria for defining asthma severity use parent report of symptom frequency
to determine severity; therefore, our definitions are consistent with this
standard.
It could be argued that the children described by their providers as
having mild intermittent asthma experienced less severe symptoms compared
with those children who were accurately described by their providers as having
mild persistent to severe persistent symptoms. However, those children with
the most severe asthma symptoms (those who used rescue medications daily)
were not more accurately classified by their providers. In fact, even those
children with multiple acute visits for asthma and with hospitalizations for
asthma were frequently misclassified as having mild intermittent asthma.
The providers we surveyed were aware that the children were selected
for this study because they met our screening criteria for mild persistent
to severe persistent asthma. Their severity assessments may, therefore, have
been biased by this knowledge. In this case, our findings of inaccurate classifications
of asthma severity would underestimate the true problem. Similarly, families
may have been affected by a social desirability bias, which would lead to
overreporting of the use of maintenance medications. Our findings, therefore,
may represent an underestimation of the magnitude of inadequate therapy.
The subjects in this study were young children (ages 4-6 years) attending
preschool, kindergarten, or first grade. Therefore, our findings can only
be generalized to children of a similar age range. Further, only urban children
from Rochester were included in the study. The experiences of children with
asthma and their providers might be different in rural or suburban localities,
or in different urban areas.
In conclusion, most children in this study were not accurately classified
as having mild persistent to severe persistent asthma, and they had not been
prescribed maintenance medications. Further research is needed to identify
the cause for provider underestimations of symptom severity. Since most of
the children who were correctly classified by their providers had been prescribed
a maintenance medication, it is likely that improved communication between
families and providers would substantially improve adherence to asthma care
guidelines.
| What This Study Adds
National guidelines recommend maintenance medications for all children
with mild persistent to severe persistent asthma. Many studies have shown
that inadequate therapy with maintenance medications is common, particularly
for poor urban children. Providers may not be aware of the severity of their
patients' symptoms, and provider underestimations of asthma severity may contribute
to poor adherence to guidelines. Most children in this study were not accurately
classified by their providers as having mild persistent to severe persistent
asthma, and they had not been prescribed maintenance medications. When providers
were aware of their patient's asthma symptoms, most of the children were prescribed
maintenance medications. Efforts to increase provider awareness of asthma
severity are likely to improve adherence to asthma care guidelines.
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AUTHOR INFORMATION
Accepted for publication October 25, 2001.
This study was supported by a grant from the Halcyon Hill Foundation,
Webster, NY.
Corresponding author: Jill S. Halterman, MD, MPH, Strong Children's
Hospital, 601 Elmwood Ave, Rochester, NY 14642 (e-mail: jill_halterman{at}urmc.rochester.edu).
From the Department of Pediatrics, the University of Rochester School
of Medicine and Dentistry and Strong Children's Hospital (Drs Halterman, Kaczorowski,
McConnochie, Holzhauer, and Szilagyi, and Mss Conn and Lauver), and the School
of Nursing (Dr Yoos), University of Rochester, Rochester, NY.
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