Journal of Pediatric Psychology, Vol. 28, No. 6, 2003, pp. 393-401
© 2003 Society of Pediatric Psychology
Congruence Between Parents' and Adolescents' Reports of Special Health Care Needs in a Title XXI Program
Institute for Child Health Policy and Department of Pediatrics, University of Florida
All correspondence should be sent to Lise M. Youngblade, PhD, Institute for Child Health Policy and Department of Pediatrics, University of Florida, 5700 S.W. 34th Street, Suite 323, Gainesville, Florida 32608. E-mail: lmy{at}ichp.edu.
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Abstract |
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Objectives The purpose of this study was to examine agreement between adolescents and their parents about whether or not the adolescent had a special health care need, using the Children with Special Health Care Needs (CSHCN) Screener. Methods Telephone surveys that included the CSHCN Screener were conducted with 522 adolescents and their parents who were new enrollees in Florida's State Children's Health Insurance Program (SCHIP). Results Analyses revealed substantial agreement as to whether or not the adolescent had a chronic condition. However, a full 15% of pairs disagreed. Analyses of pair disagreement revealed that parents reported adolescents' chronic conditions more often than adolescents, most strikingly for mental health conditions. Additional analyses revealed that pairs with older adolescents, female adolescents, and Hispanic origin had higher odds of being congruent than their counterparts. Conclusions The results showed higher congruence using the consequence-based CSHCN Screener than is typically reported for diagnosis-based approaches. Despite an impressive rate of agreement, the analyses also highlighted parents' tendency to overreport special health care needs relative to their adolescent, particularly for mental health issues, and illustrated some of the demographic factors that might predict congruence. These findings are relevant to work related to the use of tools such as the CSHCN Screener in profiling enrollees in health care programs that serve children and adolescents.
Key words: parent-adolescent agreement; special health care needs; CSHCN Screener; SCHIP; chronic conditions; Title XXI.
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Introduction |
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A number of studies have documented the health status and health care needs of adolescents over the last several years (English, Kapphahn, Perkins, & Wibbelsman, 1998
;
Zimmer-Gembeck, Alexander, & Nystrom,
1997; Ziv, Boulet, & Slap,
1999). While this research has found that most adolescents are
healthy, an estimated 8% of adolescents have a chronic physical or
psychological condition that limits their daily activities
(Newacheck, Brindis, Cart, Marchi, &
Irwin, 1999). In general, epidemiological estimates of children
and adolescents with special health care needs range from 5% to 30%, depending
on the definition used and the severity of the children's conditions
(Newacheck et al., 1998). Many
concerns have been raised that children and adolescents with special health
care needs will face restricted access to care when enrolled in managed care
plans, where health care use, costs, and specialty use are carefully
monitored, potentially resulting in adverse health outcomes
(Lozano, Fishman, VonKorff, & Hecht,
1997; Newacheck et al.,
1996). It is not just the case that children and adolescents with
special health care needs consume most of the health care dollars spent on
children and adolescents, but their health care requirements make them
especially vulnerable to access, cost, quality, and coverage weaknesses in the
health care system (Bethell, Read, Stein,
et al., 2002; Fox, Wicks, &
Newacheck, 1993; Neff &
Anderson, 1995).
The first step in being able to effectively provide medical and behavioral
health services to children and adolescents with special health care needs, as
well as to monitor their health care needs, quality of care, and changes in
health status, is identification of those with special needs. These
individuals are often identified using data resulting from structured
diagnoses of specific physical and mental health conditions. Such an approach
therefore identifies them when parents and/or administrative records name a
specific diagnosed health condition. Unfortunately, however, this approach may
underidentify children with chronic medical or behavioral conditions that have
yet to be formally diagnosed or are less likely to be recalled or acknowledged
by name by parents (Bethell, Read, Stein,
et al., 2002).
An alternative approach has been proposed based on theoretical and
empirical work indicating that childhood chronic conditions often share
similar consequences in terms of function and services use
(Perrin et al., 1993;
Stein & Jessop, 1989;
Stein & Silver, 1999).
This approach has been formalized by the federal Maternal and Child Health
Bureau (MCHB) into a widely adopted definition of a special health care
need that states that a child or adolescent (1) has or is at risk for a
physical, developmental, behavioral, or emotional condition and (2) requires
health or related services of a type or amount beyond that required by
children generally (McPherson et al.,
1998). With its broad focus on health conditions, the MCHB
definition moves beyond those that are primarily based on physical health
conditions to include behavioral, developmental, and emotional conditions as
well. Moreover, the definition requires a service need or consequence in order
for the child to be considered to have a special health care need. In
addition, the definition also includes those "at risk" for a
condition, as it implies that a child or adolescent may have a special health
care need even if it has not been formally diagnosed
(Bethell, Read, Stein, et al.,
2002).
The Children with Special Health Care Needs (CSHCN) Screener
(Bethell, Read, Stein, et al.,
2002) was developed to meet the intent of the MCHB definition of
children and adolescents with special health care needs. Specifically, the
goal of the developers was to provide an instrument that is efficient and
flexible for use across different modes of administration and would identify
children commensurate with epidemiological studies of children with special
health care needs. The intent of the CSHCN Screener is to be sensitive enough
to capture children and adolescents with a wide range of childhood chronic
conditions and specific enough to not include children with nonchronic or very
mild health problems. The CSHCN Screener does not focus on specific diagnostic
criteria, but asks questions regarding length and level of prescription
medicines; medical or educational care or services; functional limitations;
speech, occupational, and physical therapies; and mental health needs.
The CSHCN Screener is a widely used tool. For example, the National
Committee for Quality Assurance (NCQA), a nonprofit group that reports on the
quality of managed care plans, including health maintenance organizations,
produces a performance measurement tool, the Health Plan Employer Data and
Information Set (HEDIS), which helps health plans and other providers collect
health care data using a set of standardized performance measures. Use of
HEDIS measures is necessary to receive NCQA certification. As a mechanism for
health plans to identify children with special health care needs, the CSHCN
Screener is included in HEDIS. In addition, the CSHCN Screener is currently
being used in the National Medical Expenditures Panel Survey to develop
national estimates of the prevalence of children with special health care
needs (Agency for Healthcare Research and
Quality, 2001) as well as the National CSHCN Survey, which will
provide both state and national prevalence estimates
(van Dyck et al., 2002).
Despite widespread use of the CSHCN Screener, one unexplored issue relevant
to the identification of adolescents' special health care needs is the degree
to which parents and adolescents agree in their reports of the adolescent's
health using this tool. The survey was originally designed for parent or
caregiver response, and in the development and testing stages was administered
to the parents of children and adolescents. However, one of its intentions is
to be flexible across multiple modes of delivery, and this includes questions
about self-administration for older children and adolescents. In addition,
there are more general concerns about whether parents or adolescents
themselves are the more reliable and valid responders to these types of
questions, especially regarding mental health issues
(Bethell, Read, Stein, et al.,
2002).
The primary goal of the current study was to examine the degree to which
parents and adolescents agreed in identifying a chronic condition in the
adolescent using the CSHCN Screener. In general, the extant literature
demonstrates limited agreement between adolescents and parents in terms of
general health and mental health concerns, especially when specific diagnoses
are considered (e.g., Achenbach,
McConaughy, & Howell, 1987;
Jensen et al., 1999;
Sawyer, Clark, & Baghurst,
1993; Verhulst & van der
Ende, 1992). Although extant data relevant to a broad
consequence-based approach to health care needs are few, it appears that when
the emphasis moves toward functional outcomes of the health care concern
(e.g., service use), parent/youth agreement tends to improve (see, e.g.,
Stiffman et al., 2000). In the
present study, owing to the fact that the CSHCN Screener queries respondents
about broad-based consequences of the special health care need, and because
respondents are not asked about specific diagnoses, we expected the majority
of pairs to be in agreement.
Researchers have also begun to consider how congruency varies by
characteristics such as age, gender, and type of symptoms. In general, the
moderating effects of age and gender are inconclusive. Some studies show that
younger children agree with parents more than do adolescents, others show the
opposite, and still others show no differences (see
Frank, Van Egeren, Fortier, & Chase,
2000). There is also some evidence that parent-adolescent
incongruency may be greater for females than for males
(Knox, King, Hanna, Logan, &
Ghaziuddin, 2000), although this finding may apply more
specifically to aggressive, externalizing behavioral disorders than more
general health or mental health concerns, and others have reported findings to
the converse (e.g., Seiffge-Krenke &
Kollmar, 1998). Given that this body of research is largely
diagnosis driven, the moderating effects of age and gender on a
consequence-based approach to agreement about special health care needs remain
relatively unexplored.
Moreover, there is a glaring lack of information in the literature about
differences or congruencies based on race and ethnicity. Previous
epidemiological research has documented lower chronic condition identification
rates for Hispanic and black children
(Bethell, Read, Stein, et al.,
2002; Lieu, Newacheck &
McManus, 1993; Newacheck et
al., 1998; Shenkman, Vogel,
Brooks, Wegener, & Naff, 2001) compared with white children.
However, the issue of racial and ethnic variation in agreement
remains unexplored.
More consistency in the magnitude and direction of parent/youth agreement
has emerged with respect to types of symptoms. Behavioral health studies have
found that rates of congruence vary by how "public" the health
concern is. Research has shown that parent-adolescent agreement is weaker for
self-directed, "internalizing" problems than for other-directed,
"externalizing" problems
(Achenbach et al., 1987;
Frank et al., 2000). The
direction of nonagreement suggests that parents usually report more
internalizing difficulties for their children than children report for
themselves (e.g., Kazdin, French, Unis,
& Esveldt-Dawson, 1983;
Verhulst & van der Ende,
1992).
Given these issues, the second goal of this study was to investigate the
likelihood of congruence based on the adolescent's age, gender, race, and
ethnicity. We hypothesized greater odds of agreement for pairs with older
adolescents than younger ones, on the basis that younger (vs. older)
adolescents may have less cognitive ability to report reliably and validly
about their own symptomatology (Edelbrock,
Costello, Dulcan, Conover, & Kala, 1986;
Jensen et al., 1995). We also
expected pairs with male adolescents to be more likely to be congruent than
pairs with females (e.g., Knox et al.,
2000). Finally, given the lack of information about differences in
parent/youth congruency based on racial or ethnic characteristics, the effects
of race and ethnicity were examined in an exploratory manner.
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Methods |
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Setting
Adolescents included in this study were new enrollees in the Florida Healthy Kids Program during 2000-2001. The Florida Healthy Kids Program was among the first large-scale initiatives in the United States to cover children who were not eligible for Medicaid and whose parents could not afford private insurance. In 1990, the Florida legislature established the nonprofit Healthy Kids Corporation (HKC) to administer a comprehensive health insurance program for uninsured children (Freedman, Klepper, Duncan, & Bell, 1988
). The program began in 1992 in one
Florida county and expanded to 17 other sites by 1997, with more than 40,000
enrollees. Children who were 5 to 19 years of age and their siblings who were
3 to 5 years of age were eligible to participate. Children of any age who were
enrolled in Medicaid were ineligible. After implementation of the Title XXI
federal initiative in October 1998, the Healthy Kids Program expanded to all
67 Florida counties under the State Child Health Insurance Program (SCHIP),
with more than 54,000 enrollees, making it the largest component of Title XXI
in Florida. Families under 200% of the federal poverty level pay a flat fee of
$15 per family per month, regardless of the number of children insured. The
rich benefits package includes well-child visits, immunizations, inpatient
care, and maternity benefits with no copayment required. Other benefits, with
minimal copayments, include outpatient care, mental health services,
prescriptions, eyeglasses, physical therapy, and emergency services and
transportation.
Sample and Procedure
Families with adolescent children were identified from quarterly enrollment
files provided by a third-party administrator contracted by the HKC. Telephone
surveys were conducted with a random sample of families that had an adolescent
between 11.5 and 19 years of age; in families where there was more than one
adolescent, one was randomly selected as the target. The parent/guardian was
contacted first and asked to complete a telephone survey addressing the health
status, special needs, health care use, and unmet needs of the adolescent. At
the end of the interview, parent/guardians were asked for permission to
interview their son or daughter along the same lines. Of the 1,676 caregivers
contacted, 1,256 (75%) agreed to complete the survey. Of these, 851 (68%) gave
permission for their child to be interviewed, and 607 (71%) of these
adolescents agreed to participate. The final sample consists of 522 matched
parent/adolescent pairs who had completed the CSHCN Screener.
Table I describes the
demographic characteristics of this sample.
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As seen in Table I, the sample is primarily white and non-Hispanic, with a median income of between $25,000 and $34,999. Average age of the adolescents was 14.39 (SD = 1.60), ranging from 12 to 17. For purposes of the subsequent analyses, age was split at the median into a group of younger adolescents (12-14 years of age) and older adolescents (15-17 years); this age-group division also corresponds with the transition from middle school to high school. There were somewhat more female than male adolescents who completed the survey. Parental respondents were primarily mothers. Adolescents were also somewhat more likely to reside in two-parent than one-parent homes.
Measures
CSHCN Screener
The intent of the CSHCN Screener is to be sensitive enough to capture
children with a wide range of childhood chronic conditions and specific enough
to not include children with nonchronic or very mild health problems
(Bethell, Read, Stein, et al.,
2002). The CSHCN Screener contains five question sequences, each
of which asks about a specific health consequence. The five main questions
involve whether the child (a) needs or uses prescription medicines prescribed
by a doctor (other than vitamins); (b) has above-routine need for medical,
mental health, or educational services; (c) is limited or prevented in any way
in his or her ability to do things most children of the same age can do; (d)
needs or uses specialized therapies such as speech, occupational, and physical
therapies; and (e) needs or receives treatment or counseling for an emotional,
behavioral, or developmental problem. Respondents who answer "yes"
to any of the five consequence questions are then asked up to two follow-up
questions to determine if the consequence is attributable to a medical,
behavioral, or other health condition lasting or expected to last at least 12
months. Only children with positive responses to one or more items and each of
the associated follow-up questions qualify as having a special health care
need.
The survey developers report robust psychometric properties. The survey was
field-tested in three independent samples—a national sample of
households with children, a sample of children enrolled in Medicaid managed
care through the Temporary Aid to Needy Families program, and a sample of
children receiving Supplementary Security Income benefits in Washington State.
Positive identification rates were 15.3%, 20.7%, and 94.6%, respectively. In
addition, the effect of parent-reported utilization of care and child health
status on the probability of positive identification was examined. Children
with increased outpatient visits to a health care provider in the prior 6
months and children whose parents rated their child's health as less than
excellent or very good were significantly more likely to be
positively identified by the screener.
(Bethell, Read, Stein, et al.,
2002). In a following study
(Bethell, Read, Neff, et al.,
2002), the developers assessed the level of agreement between the
CSHCN Screener and the Questionnaire for Identifying Children with Chronic
Conditions-Revised (QuICCC-R; Stein,
Silver, & Bauman, 2001), a conceptually similar but longer
instrument that had been previously validated as a method for identifying a
broad range of children with special health care needs. Overall, based on
results from a national sample and from a health plan sample, the CSHCN
Screener exhibited 90% agreement with the QuICCC-R. In addition, using the
CSHCN Screener as the "test," the positive and negative predictive
values were .93 and .89, respectively, suggesting that if the CSHCN Screener
positively identified a child, there was a 93% probability of identification
by the QuICCC-R as well. Taken together, these results suggest that the CSHCN
Screener is a valid tool for assessing the presence of a special health care
need.
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Results |
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Overall, 93 (17.82%) parents reported that their adolescent son or daughter had a chronic condition on the CSHCN Screener. Somewhat fewer adolescents, 66 (12.64%), reported that they themselves had a chronic special health care need.
Next, to analyze the degree of parent/adolescent agreement, parents'
reports were cross-tabulated with reports from adolescents. Three measures of
agreement were calculated. The first was simple agreement, or the percent of
pairs in which both parent and adolescent identified a chronic condition or
did not identify a chronic condition. The second was Cohen's kappa
(Cohen, 1960), which is a
statistic that adjusts for agreement by chance; thus, it is a more
conservative measure than simple agreement. Kappa ranges from 0 (perfect
disagreement) to 1 (perfect agreement), with kappa values of .70 and above
representing good agreement, .60-.70 representing acceptable agreement, and
less than .60 representing poor agreement. Adjusted kappa was used because of
the unequal distribution of special health care needs, that is, because having
a special health care need is a much less frequent event than not having a
special health care need.
The third value, disagreement ratio, is a measure of disagreement calculated from the off-diagonals in the cross-tabulation. It is defined as the number of parents who reported that their adolescent met the criteria of the screen when the adolescent did not, divided by the number of adolescents who met the screen when their parents reported that they did not. Thus, ratios of greater than 1.0 indicate that parents are more likely to report a chronic condition than adolescents, whereas ratios of less than 1.0 indicate that adolescents are more likely than parents to report a chronic condition.
Table II presents congruence analyses using the summary screening score on the CSHCN Screener (that is, those meeting the screening criteria vs. those not meeting the screening criteria) and the response to each of the five main questions separately. Several interesting findings emerged from this analysis. First, on the whole there was substantial agreement between parents and adolescents, with 85% of the sample in congruence (kappa = .70). Second, despite considerable agreement between parents and adolescents, a full 15% of the sample was noncongruent. Examination of the disagreement ratio revealed that parents were about twice as likely to report a chronic condition when their child did not, as compared with their adolescent reporting a chronic condition when they did not.
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To help clarify this issue, we analyzed the CSHCN Screener items to see whether there was an item pattern to disagreement. Again, as evidenced by the percent agreement as well as by the kappas for each of the five CSHCN Screener items, there was considerable agreement between parents and adolescents on each item. Interestingly, however, the pattern of disagreements varied by item. Parents were 1.5 to 2.75 times more likely than the converse to report that their adolescent needed prescription medicines or medical services and/or had functional limitations in the absence of an adolescent report of the same. The biggest discrepancy was in terms of mental health issues, with parents more than four times as likely to report a mental-health care need for their child when their child did not, as compared to their adolescent reporting a mental-health care need when the parent did not. On the contrary, adolescents were more apt than the reverse to report a need for medical therapy that was not reported by the parent.
The second goal of the study was to examine adolescent demographic characteristics as predictors of the probability of congruence. To do so, logistic regression was used to predict the odds of congruence (i.e., both parent and adolescent agree that the adolescent either has or does not have a special health care need vs. pairs that do not agree), based on the adolescent's age group (11-14 vs. 15-19 years old), gender (male vs. female), race (white vs. nonwhite), and ethnicity (Hispanic vs. non-Hispanic). As seen in Table III, pairs with older adolescents who were Hispanic had higher odds of being congruent than their counterparts; race and gender were nonsignificant predictors of congruence.
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Discussion |
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The main purpose of this study was to investigate the congruence between low-income adolescents enrolled in Florida's SCHIP and their parents in their reports of whether or not the adolescent had a chronic physical or mental health condition, using the CSHCN Screener (Bethell, Read, Stein, et al., 2002
). The second goal of the study was to examine the
significance of adolescent age, gender, race, and ethnicity in predicting the
odds of pair congruence. In general, the majority of pairs were congruent. For
the minority who were not, however, parents were more likely to diagnose their
adolescent with a chronic condition than adolescents were themselves,
especially in terms of mental health concerns. In addition, pairs with older
adolescents who were Hispanic had higher odds of agreement than pairs with
younger adolescents who were non-Hispanic. We discuss these issues in
turn.
Our results revealed that about 18% of the parents surveyed identified
their adolescent as having a special health care need. Others have estimated
the prevalence of children and adolescents with special health care needs to
be between 5% and 30% (e.g., Newacheck et
al., 1998). The developers of the CSHCN Screener, in fact,
reported that this tool identified, based on parent report, about 17%-18% of
adolescents in a large random national sample as having a special health care
need (Bethell, Read, Stein, et al.,
2002). Thus, the parent-report identification rate in the current
sample is very similar to what has been reported in other studies, including
research done by the survey developers.
Adolescents, on the other hand, were somewhat less likely to report a
special health care need, with about 13% reporting a chronic condition. Other
studies have documented that parents may be more likely to attribute more
difficulties to their children than their children report for themselves,
particularly when considering internalizing problems
(Kazdin et al., 1983;
Verhulst & van der Ende,
1992). The current data support this contention, as evidenced by
the higher percentage of parents in the sample reporting chronic conditions
than adolescents, but also as evident in the analyses of congruence within
pairs, especially concerning the identification of mental health needs.
Overall, the majority of pairs (about 85%) were in congruence in reporting
whether or not the adolescent had a special health care need using the CSHCN
Screener. This is a relatively high rate of agreement as compared with other
studies (see, e.g., Cantwell, Lewinsohn,
Rohde, & Seeley, 1997;
Sawyer et al., 1993) and
supports the proposition that parent/youth agreement may be stronger when
considering the functional status outcomes of health concerns rather than
specific diagnoses (Stiffman et al.,
2000).
Nevertheless, based on our findings, while in the majority of cases parents
and offspring will agree, a significant minority will not. The analyses of
pair disagreement revealed that parents were more likely to report chronic
conditions in their youth than adolescents were about themselves, as previous
research has suggested (Kazdin et al.,
1983; Verhulst & van der
Ende, 1992). The tendency for parents to be more likely to report
a special health care need in their adolescent than the adolescent was for
him/herself was true at the item level as well, with one exception. While
adolescents were more likely to report needs for therapies than were parents,
parents reported more difficulties in their adolescents' use of prescription
medicine, need for medical services, functional limitations, and mental
health. In fact, the largest magnitude of disagreement was in regard to mental
health needs, with parents more than four times as likely to report a mental
health condition in their adolescent than adolescents were themselves.
The fact that parents were more likely to report mental health concerns in
their adolescents than adolescents were themselves raises several issues.
First, some have argued that any disagreement occurs because parents see youth
more negatively than youths see themselves, particularly with respect to
behavior (Kazdin et al., 1983;
Loeber, Green, Lahey, & Stouthamer,
1989; Thurber & Snow,
1990; Stiffman et al.,
2000). Thus, the specific finding relevant to mental health may be
due to parents' proclivity to see adolescent behavior in a negative light and
to report such behavior as a mental health concern. On the other hand,
however, this finding may reflect the fact that adolescents
underreported relative to their parents, and thus suggests that
adolescents either do not recognize or are unwilling to admit mental health
problems. This has potentially serious consequences in that help seeking
begins with the recognition of a potential problem. For adolescents, who are
generally unlikely to refer themselves for help even when a problem is
recognized (Seiffge-Krenke & Kollmar,
1998), the fact that they may not recognize or report the problem
may limit access even further.
Finally, because a major purpose of this screening tool is its application in epidemiological profiling of the prevalence of special health care needs, it is important to recognize the possible decisions and resource allocations that might be affected by using parent or adolescent report. For example, because adolescent reports are less frequent, resulting in a lower prevalence estimate of mental health needs (and, indeed, special health care needs in general), health care resources may be fewer than would be made available if parent-based prevalence estimates were used. In addition, using the CSHCN Screener to identify specific adolescents in need of services may lead to missed opportunities when adolescents complete the CSHCN Screener; conversely, parent reports may lead to additional and potentially unnecessary service and treatment.
The second goal of the study was to predict the likelihood of
parent/adolescent agreement based on adolescent demographic characteristics.
Because congruence is not perfect, treatment and resource allocation
decisions, as well as conditions under which parents' or adolescents' reports
should be treated at face value, may be informed by knowing who is likely to
be congruent. The current findings suggest that pairs with older (15-17 years)
adolescents have higher odds of being congruent than their younger (12-14
years) counterparts. For example, older adolescents may have greater cognitive
ability to report about their own symptomatology
(Edelbrock et al., 1986;
Jensen et al., 1995). In
addition, because of heightened parent-child conflict during early
adolescence, older adolescents and their caregivers may communicate more
effectively (Steinberg,
1990).
In addition, the current findings suggest that there may be cultural
differences in the degree to which adolescents and their parents are likely to
agree about special health care needs. In this study, pairs of Hispanic
heritage were more likely to be congruent than non-Hispanic pairs. This
finding, in combination with previous research showing lower odds of
identification among Hispanics than non-Hispanics
(Shenkman et al., 2001),
suggests that although Hispanic adolescents with special health care needs are
less likely to be identified using the CSHCN Screener, when they are
identified, both parent and adolescent are more likely to agree on the
presence of a chronic condition.
The present study had several limitations. First, we had no benchmark standard by which to determine whose reports—parents' or adolescents'—were more valid. Work we have in progress will link diagnostic criteria from claims and encounter data to this survey instrument. Second, although we have examined congruence and discrepancy on this measure, this is only a first step. The next step is to test the proposition that congruence in identifying a special health care need may lead to better access to and utilization of health care by adolescents with such needs. A longitudinal study of these pairs is currently under way to test this hypothesis. Finally, it should be recalled that this study was conducted with a sample of low-income families who are enrolled in a specific public health insurance program. Studies of congruence across a wider range of socioeconomic strata are needed to further test the generalizability of the findings reported here.
In summary, the goal of this study was to evaluate congruence between adolescents and parents in their reports of adolescents' special health care needs. The results showed higher congruence using the consequence-based CSHCN Screener than is typically reported for diagnosis-based approaches. Despite an impressive rate of agreement, the analyses also highlighted parents' tendency to overreport (relative to their adolescent) special health care needs, particularly for mental health issues, and illustrated some of the demographic factors that might predict congruence. These findings add to the growing corpus of data relevant to defining and assessing children's special health care needs and to work related to the use of tools such as the CSHCN Screener in profiling enrollees in health care programs that serve children and adolescents.
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Acknowledgments |
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This study, funded through a cooperative agreement from the Agency for Healthcare Research and Quality (AHRQ) (HS 10465), is part of the Child Health Insurance Research Initiative (CHIRI), which is cofunded by AHRQ, the David and Lucile Packard Foundation and the Health Resources and Services Administration.
Received June 3, 2002; revision received October 21, 2002; accepted November 22, 2002
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