Published online March 13, 2006
PEDIATRICS Vol. 117 No. 4 April 2006, pp. e663-e674 (doi:10.1542/peds.2005-1892)
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Health Care Utilization and Needs After Pediatric Traumatic Brain Injury

Beth S. Slomine, PhDa, Melissa L. McCarthy, MS, ScDb, Ru Ding, MSb, Ellen J. MacKenzie, PhDc, Kenneth M. Jaffe, MDd, Mary E. Aitken, MDe, Dennis R. Durbin, MDf, James R. Christensen, MDg, Andrea M. Dorsch, PhDh, Charles N. Paidas, MDi the CHAT Study Group

a Department of Neuropsychology, Kennedy Krieger Institute, and Department of Psychiatry, Johns Hopkins University School of Medicine, Johns Hopkins University, Baltimore, Maryland
b Department of Emergency Medicine, Johns Hopkins University School of Medicine, Johns Hopkins University, Baltimore, Maryland
c Center for Injury Research and Policy, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland
d Departments of Rehabilitation Medicine and Pediatrics, Children's Hospital and Regional Medical Center, University of Washington School of Medicine, Seattle, Washington
e Department of Pediatrics, University of Arkansas for Medical Sciences College of Medicine, Little Rock, Arkansas
f Department of Pediatrics, University of Pennsylvania School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania
g Department of Physical Medicine and Rehabilitation, Kennedy Krieger Institute, and Department of Physical Medicine and Rehabilitation, Johns Hopkins University School of Medicine, Johns Hopkins University, Baltimore, Maryland
h Division of Rehabilitation Psychology, Children's Hospital and Regional Medical Center, University of Washington School of Medicine, Seattle, Washington
i Department of Surgery, University of South Florida College of Medicine, Tampa, Florida


    ABSTRACT
 TOP
 ABSTRACT
 METHODS
 RESULTS
 DISCUSSION
 REFERENCES
 
OBJECTIVE. Children with moderate to severe traumatic brain injury (TBI) show early neurobehavioral deficits that can persist several years after injury. Despite the negative impact that TBI can have on a child's physical, cognitive, and psychosocial well-being, only 1 study to date has documented the receipt of health care services after acute care and the needs of children after TBI. The purpose of this study was to document the health care use and needs of children after a TBI and to identify factors that are associated with unmet or unrecognized health care needs during the first year after injury.

METHODS. The health care use and needs of children who sustained a TBI were obtained via telephone interview with a primary caregiver at 2 and 12 months after injury. Of the 330 who enrolled in the study, 302 (92%) completed the 3-month and 288 (87%) completed the 12-month follow-up interviews. The health care needs of each child were categorized as no need, met need, unmet need, or unrecognized need on the basis of the child's use of post-acute services, the caregiver's report of unmet need, and the caregiver's report of the child's functioning as measured by the Pediatric Quality of Life Inventory (PedsQL). Regardless of the use of services or level of function, children of caregivers who reported an unmet need for a health care service were defined as having unmet need. Children who were categorized as having no needs were defined as those who did not receive services; whose caregiver did not report unmet need for a service; and the whose physical, socioemotional, and cognitive functioning was reported to be normal by the caregiver. Children with met needs were those who used services in a particular domain and whose caregivers did not report need for additional services. Finally, children with unrecognized needs were those whose caregiver reported cognitive, physical, or socioemotional dysfunction; who were not receiving services to address the dysfunction; and whose caregiver did not report unmet need for services. Polytomous logistic regression was used to model unmet and unrecognized need at 3 and 12 months after injury as a function of child, family, and injury characteristics.

RESULTS. At 3 months after injury, 62% of the study sample reported receiving at least 1 outpatient health care service. Most frequently, children visited a doctor (56%) or a physical therapist (27%); however, 37% of caregivers reported that their child did not see a physician at all during the first year after injury. At 3 and 12 months after injury, 26% and 31% of children, respectively, had unmet/unrecognized health care needs. The most frequent type of unmet or unrecognized need was for cognitive services. The top 3 reasons for unmet need at 3 and 12 months were (1) not recommended by doctor (34% and 31%); (2) not recommended/provided by school (16% and 17%); and (3) cost too much (16% and 16%). Factors that were associated with unmet or unrecognized need changed over time. At 3 months after injury, the caregivers of children with a preexisting psychosocial condition were 3 times more likely to report unmet need compared with children who did not have one. Also, female caregivers were significantly more likely to report unmet need compared with male caregivers. Finally, the caregivers of children with Medicaid were almost 2 times more likely to report unmet need compared with children who were covered by commercial insurance. The only factor that was associated with unrecognized need at 3 months after injury was abnormal family functioning. At 12 months after injury, although TBI severity was not significant, children who sustained a major associated injury were 2 times more likely to report unmet need compared with children who did not. Consistent with the 3-month results, the caregivers of children with Medicaid were significantly more likely to report unmet needs at 1 year after injury. In addition to poor family functioning's being associated with unrecognized need, nonwhite children were significantly more likely to have unrecognized needs at 1 year compared with white children.

CONCLUSIONS. A substantial proportion of children with TBI had unmet or unrecognized health care needs during the first year after injury. It is recommended that pediatricians be involved in the post-acute care follow-up of children with TBI to ensure that the injured child's needs are being addressed in a timely and appropriate manner. One of the recommendations that trauma center providers should make on hospital discharge is that the parent/primary caregiver schedule a visit with the child's pediatrician regardless of the post-acute services that the child may be receiving. Because unmet and unrecognized need was highest for cognitive services, it is important to screen for cognitive dysfunction in the primary care setting. Finally, because the health care needs of children with TBI change over time, it is important for pediatricians to monitor their recovery to ensure that children with TBI receive the services that they need to restore their health after injury.


Key Words: health service utilization • traumatic brain injury

Abbreviations: TBI—traumatic brain injury • CHAT—Children's Health After Trauma • AIS—Abbreviated Injury Scale • PedsQL—Pediatric Quality of Life Inventory 4.0 • GFS—General Functioning Scale

Traumatic brain injury (TBI) has an estimated annual incidence of 180 per 100000 for children younger than 15 years.1 Whereas the majority of injuries are mild and have few lasting neurobehavioral deficits, ~15% of children will sustain a moderate to severe TBI.1,2 Children with moderate to severe injuries show early neurobehavioral deficits that persist several years after injury.3,4 Health care services are available both in the community and through the public education system. In fact, since 1992, federal law mandates that children with TBI be eligible to receive special education services.5

Despite the negative impact that TBI can have on a child's physical, cognitive, and psychosocial well-being, only 1 study to date has documented the receipt of post-acute care health care services and needs of children with TBI.6 Results from this study revealed a high proportion of unmet and unrecognized needs in the year after injury. Furthermore, children with less severe TBIs had the highest rates of unmet need. Because this study was limited to 95 children from 1 local area, was based on a 1-year recall period of service use and need, and was conducted >15 years ago (1989), additional research is needed to determine how generalizable Greenspan and MacKenzie's findings are to contemporary cohorts of children who are hospitalized with TBI.

The purpose of this study was to characterize the use and health care needs of >300 children who were hospitalized with a TBI at 4 trauma center hospitals across the United States and to identify the child, family, and injury characteristics that were associated with unmet and unrecognized need during the first year after injury. We hypothesized that a significant proportion of children (25% or greater) would have unmet or unrecognized need during the first year after injury. In addition, we hypothesized that children who sustained a less severe TBI would have significantly higher rates of unmet need compared with children with more severe TBI. A better understanding of the needs of these children and families can help pediatricians to identify unmet and unrecognized needs that their patients may have as well as facilitate timely and appropriate referrals for services.


    METHODS
 TOP
 ABSTRACT
 METHODS
 RESULTS
 DISCUSSION
 REFERENCES
 
Patients
Between January 15, 2002, and July 31, 2003, study coordinators at 4 level 1 trauma centers screened children who were between the ages of 5 and 15 and were hospitalized for at least 1 night with a TBI. Children were eligible for inclusion in the Children's Health After Trauma (CHAT) study when they had sustained a TBI of Abbreviated Injury Scale (AIS) score of 2 or greater.7 Children were excluded when they or their parents were non–English speaking; they had a serious preexisting condition that limited their physical, psychological, or cognitive health before injury; their injury was the result of suspected child abuse; or they died during the initial hospitalization.8,9

To ensure adequate numbers of children with more severely injury, we stratified the sample by AIS severity of the head region.7 Consecutive children within each of the following study groups were enrolled until there were ~95 children in each TBI group: AIS 2, AIS 3, and AIS 4. For the AIS 5 group, we targeted 50 children because severe injuries are relatively less common.

Procedures
The study protocol was approved by the institutional review boards of all 4 participating trauma centers. During the 15-month enrollment period, the study coordinators approached all eligible families and asked them to participate in CHAT by agreeing to complete 3 telephone interviews over a 1-year period and to allow the child's medical record to be reviewed for pertinent injury information.

The contact information of all families who agreed to participate was forwarded to a professional survey research firm that conducted all 3 study interviews. All of the interviews were conducted with a primary caregiver of the injured child. The first interview, the baseline interview, was conducted as quickly after the injury as possible (median: 16 days) and was designed to obtain preinjury and background information on the child and the family. The follow-up interviews, conducted at 3 and 12 months after injury, assessed the child's function after injury and determined his or her use of health care services and needs related to the TBI.

Measures
The primary outcomes of interest for this study are children's use of health services after TBI and a categorization of their need for services in relation to their use. Use of services was caregiver reported and ascertained during the follow-up interviews.

Similar to the framework used by Greenspan and Mackenzie,6 children in the study were classified into 1 of 4 categories of need in relation to use: (1) no need identified, (2) met need, (3) unmet need, and (4) unrecognized need (Fig 1). This classification depended on 3 factors: (1) caregiver report of health care utilization, (2) caregiver report of health care services needed but not received (ie, unmet need), and (3) functional status of the child as reported by the caregiver at the time of the follow-up interview. First, we describe how we measured each of the 3 factors and then how we used these factors to define the 4 different types of need.


Figure 1
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FIGURE 1 Categorization of health care needs.

 
Health Care Utilization
During the follow-up interviews, the caregiver was read a list of health care and educational specialists and asked to report how many times the child had received the service because of the child's injury since the last interview. Many others have relied on caregiver-reported utilization to assess health care service use among children in the general population as well as children with different medical conditions such as pediatric TBI.6,1017 For purposes of this study, all services are described as a health care service regardless of whether they were provided through the child's school or in the community. On the basis of the type of health care service received, the authors categorized health care use as addressing needs in 3 domains of health: (1) cognitive, (2) physical, or (3) socioemotional. Services that addressed needs within the cognitive health domain included services that were provided by a speech therapist, an occupational therapist, an educational specialist, a neuropsychologist, or a physician. Services that addressed needs within the physical health domain were those that were provided by a physician, a physical therapist, an occupational therapist, a respiratory therapist, a personal care attendant, or a visiting nurse. Finally, services that addressed needs within the socioemotional health domain included services that were provided by a social worker, an educational specialist, a neuropsychologist, a physician, or a counselor/psychologist. Because certain professionals can address >1 type of health domain, services that were provided by these professionals were coded as addressing >1 health domain. For example, if the parent reported that the child visited a physician, then services were considered to have been received in all 3 domains because physicians can address physical, cognitive, and socioemotional issues.

Health Care Services Needed but Not Received
Like other investigators, we identified children who needed health care services but did not receive them.6,11,13,14,17 Caregivers were asked whether there were any health or educational services that the child needed but did not receive since the last interview. Caregivers who reported unmet need were asked to describe in narrative form which type of service their child needed but did not receive. Two of the authors independently characterized the service needs within the cognitive, physical, and/or socioemotional health domains. Cases of disagreement were reviewed together, and a consensus was reached. At both 3 and 12 months after injury, there was excellent agreement between the 2 reviewers (98.6% and 95.7%, respectively).

Similar to standardized responses used in the National Health Interview Survey,18 caregivers who reported unmet need were asked to provide a reason for why the service was not received from a standardized list of reasons: doctor did not recommend it, school did not recommend or provide it, cost too much, caregiver did not have time, too difficult to get there, hours not convenient for the family, or the child's problem got better. In addition, the caregiver was given the opportunity to specify another reason that was not included as part of the standard list of reasons.

Functional Status
Functional status of the child at the time of the interview was examined using the core scales of the Pediatric Quality of Life Inventory 4.0 (PedsQL).19 The scales measure the caregiver's report of the child's functioning in 4 domains: (1) physical functioning, (2) emotional functioning, (3) social functioning, and (4) school functioning. In addition to the generic scales, respondents completed the PedsQL cognitive functioning scale.20 The higher the PedsQL score (range: 0–100), the better the child's function in that domain. Children with PedsQL scale scores that were 2 SD or more below the population norms for physical, cognitive, and social/emotional functioning were categorized as dysfunctional in the respective domain and therefore in need of health care services in this domain.

Creation of Need Categories
This information then was used to classify all children into 1 of the 4 categories of need in relation to use (Fig 1). Regardless of the use of services or level of function, children of caregivers who reported an unmet need for a health care service were defined as having unmet need in that domain.6,11,13,14,17 Children who were categorized as having no needs were defined as those who did not receive services in a particular domain, whose caregivers did not report unmet need for a service in that domain, and whose caregiver reported normal function in that domain (physical, socioemotional, or cognitive). Children with met needs were those who used services in a particular domain and whose caregiver did not report need for additional services in that domain.6 Finally, children with unrecognized needs were those who were dysfunctional in a particular health domain according to their PedsQL score, were not receiving services to address the dysfunction in that domain, and whose caregiver did not report unmet need for a service in that domain.6

Finally, need categories for all 3 domains of physical, socioemotional, and cognitive health were collapsed to create an overall need category for each follow-up period. When children had >1 type of need in different domains, overall need category was based on the following hierarchy: (1) any report of unmet need in 1 of the 3 health domains resulted in the child's being characterized as having unmet need overall, (2) any child with unrecognized need (regardless of met or no need in other domains) was categorized as having unrecognized need overall, (3) any child with met needs (regardless of no needs in other domains) was characterized as having met needs overall, and (4) children with no need in all 3 domains were categorized as having no overall need.

It should be noted that for all 3 domains of physical, cognitive, and socioemotional health, children who were categorized as having no needs had the highest (best) PedsQL scale scores at 3 and 12 months after injury followed by children with met needs. Children who were categorized as having unmet or unrecognized needs consistently had the lowest PedsQL scale scores across all 3 health domains at 3 and 12 months after injury.

Correlates of Need
Characteristics of the child and the family that we hypothesized may influence or have previously been shown to influence children's use and need for health care services were ascertained during the baseline interview.1017,21,22 They included the child's age, race, and type of health insurance; the presence of any preexisting health conditions; relationship of the respondent to the child; respondent's marital status and highest level of education completed; total household income; and overall family functioning as measured by the General Functioning Scale (GFS) of the Family Assessment Device. The GFS is a 12-item rating scale that assesses overall health and pathology within the family system.23,24 Six items measure healthy functioning such as "individuals are accepted for what they are," and 6 measure unhealthy functioning such as "we don't get along well together." The scale has good internal consistency reliability and discriminates between families who presented clinically from families who did not.23,24 Furthermore, we found that abnormal family functioning using the GFS was associated with poorer functional outcome after pediatric TBI.9

Finally, children's medical records were abstracted to obtain more details on the mechanism of the injury and the nature and the severity of all injuries sustained. All injuries were categorized according to the AIS, which rates each injury on a scale from 1 (minor) to 6 (fatal).7 In addition, a major associated injury variable was created on the basis of the presence of an injury of AIS 2 or greater to another AIS body region besides the head.

Data Analysis
First, we examined the relationship between the severity of the TBI sustained and child, family, and injury characteristics as well as receipt of different health care services to determine how similar the different study groups were using a {chi}2 test. Second, the relationship between overall need and child, family, and injury variables was examined at 3 and 12 months after injury using a {chi}2 test statistic. Variables were considered statistically significant at P ≤ .05 and noted as borderline significant at .05 < P ≤ .10. Finally, for the multivariate analysis, we combined the no need and met need groups for the purpose of identifying factors that were associated with a need for services. Polytomous logistic regression analysis was used to model unmet and unrecognized need separately versus no need/met need at 3 and 12 months after injury as a function of child, family, and injury characteristics. The odds ratio and the 95% confidence interval are reported for all significant variables that were retained in the final models. Variables were considered significant in the multivariate models at P ≤ .10. For assessment of the fit of the polytomous logistic regression models, the Hosmer-Lemeshow test statistic was computed, and models that were associated with a large P value (> .05) were interpreted as fitting the data well.25


    RESULTS
 TOP
 ABSTRACT
 METHODS
 RESULTS
 DISCUSSION
 REFERENCES
 
Of the 420 eligible children, 330 (79%) enrolled in the study; 302 (92%) of those 330 who enrolled completed the 3-month and 288 (87%) completed the 12-month follow-up interviews. Children who did not enroll were more likely to lack health insurance compared with those who enrolled (10% vs <1% respectively; P < .05) and to be hospitalized longer (mean: 8.3 vs 5.3 days; P < 0.01). Table 1 provides a description of the study sample. The mean age of the children at the time of enrollment was 10.4 years (SD: 3.1). Children who sustained a severe injury (head AIS 5) were more likely to be white compared with children who sustained a less severe TBI (head AIS 2; 83% vs 60%; P ≤ .05). In addition, children who sustained a severe injury (AIS 5) were significantly more likely to have sustained a traffic-related injury, to have a major associated injury, and to be discharged to a rehabilitation facility compared with children who sustained a less severe TBI (head AIS 2–4; P ≤ .05).


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TABLE 1 Percent Distribution of Patient and Injury Characteristics by TBI Severity

 
Table 2 displays the proportion of children who received different health care services after injury. As expected, more health care services were received between hospital discharge and 3 months than between 3 and 12 months after injury. Seeing a physician was the most frequent type of service received by study children after injury. However, 37% of caregivers reported that their child did not see a physician at all during the first year after injury (data not shown). The caregivers of children with more severe head injuries were significantly more likely to report receiving all types of services at 3 months after injury compared with the caregivers of those with a less severe TBI (P ≤ .05).


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TABLE 2 Percent of Patients Who Received Any Injury-Related Health Care Services After Injury

 
The different health care needs of the study sample are shown in Table 3. Approximately one fifth of caregivers reported unmet needs and an additional 10% had unrecognized needs after injury. The top 3 reasons for unmet need at 3 and 12 months were (1) not recommended by doctor (34% and 31%), (2) not recommended/provided by school (16% and 17%), and (3) cost too much (16% and 16%). The most frequent type of unmet or unrecognized need at 3 and 12 months after injury was for cognitive services.


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TABLE 3 Types of Health Care Needs at 3 and 12 Months After TBI

 
The change in health care needs between 3 and 12 months after injury is illustrated in Fig 2. Very few children with no needs at 3 months after injury changed to unmet (n = 1) or unrecognized need (n = 3) at 12 months after injury. In contrast, the caregivers of 19% (n = 30) of children with met needs at 3 months reported unmet needs at 12 months after injury. Approximately half (48% and 50%, respectively) of children with unmet or unrecognized needs at 3 months still had unmet or unrecognized needs at 12 months after injury. A larger proportion of those with unmet need at 3 months reported met need at 12 months (39%) compared with those with unrecognized need at 3 months (25%) after injury.


Figure 2
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FIGURE 2 Change in overall health care need from 3 to 12 months after injury (N = 277).

 
Table 4 compares the percentage distribution of different child, caregiver, and injury characteristics by type of overall health care need at 3 months after injury. Because the factors that were associated with need were similar at 3 and 12 months after injury, only the 3-month data are displayed; however, discrepancies between 3 and 12 months are noted. At 3 and 12 months after injury, children with unrecognized needs were significantly more likely (47%) to be nonwhite compared with children with met needs (24%; P ≤ .05). Children with unrecognized needs were significantly more likely to have sustained a less severe TBI (AIS 2 = 45%) compared with children with met needs (24%; P ≤ .05) at 3 months after injury (but not at 12 months). Finally, the caregivers of children with unrecognized needs were significantly more likely to have not completed high school and were more likely to report abnormal family functioning compared with the caregivers of children with other types of needs.


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TABLE 4 Type of Need by Child; Caregiver; and Injury Characteristics at 3 Months After Injury

 
Children with unmet needs were significantly more likely to have a preexisting psychosocial condition (48%) compared with children with other types of needs (Table 4). Children with no needs (85%) or met needs (76%) were significantly more likely to have commercial insurance as opposed to children with unmet (62%) or unrecognized needs (61%; P ≤ .05). Children with no needs were also significantly more likely to have a male caregiver as the study respondent (21%) compared with children with unmet need (4%; P ≤ .05). Children with no needs also were significantly more likely to have sustained less severe injuries, as measured by mechanism of injury (fall as opposed to a traffic-related injury) and the absence of a major associated injury.

Tables 5 and 6 display the results of modeling unmet and unrecognized needs compared with no need/met needs as a function of child, family, and injury characteristics at 3 and 12 months after injury. Only predictor variables that were significant or borderline significant were retained in the final models. At 3 months after injury, children with a preexisting psychosocial condition were 3.3 times more likely to report unmet need compared with children who did not have one (Table 5). Also, female caregivers were significantly more likely to report unmet need compared with male caregivers. Finally, the caregivers of children with Medicaid were 1.8 times more likely to report unmet need compared with children who were covered by commercial insurance. The only factor that was associated with unrecognized need at 3 months after injury was abnormal family functioning (odds ratio: 5.09).


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TABLE 5 Factors Associated With Unmet and Unrecognized Need at 3 Months After Injury Using a Polytomous Logistic Regression Model.

 

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TABLE 6 Factors Associated With Unmet and Unrecognized Need at 12 Months After Injury Using a Polytomous Logistic Regression Model

 
At 12 months after injury, although TBI severity was not significant, children who sustained a major associated injury were 2.1 times more likely to report unmet need compared with children who did not (Table 6). In addition to poor family functioning's being associated with unrecognized need, nonwhite children were significantly more likely to have unrecognized needs at 12 months compared with white children. Consistent with the 3-month results, the caregivers of children with Medicaid were significantly more likely (44%) to report unmet needs 12 months after injury.

We also modeled unmet and unrecognized need versus met need only (omitting children with no need) at 3 and 12 months after injury with similar results. The only exceptions were that at 3 months after injury, insurance was no longer significant (P = .15), and at 12 months after injury, the presence of a major associated injury (P = .23) was not significant.


    DISCUSSION
 TOP
 ABSTRACT
 METHODS
 RESULTS
 DISCUSSION
 REFERENCES
 
Almost one third of children in this study cohort who were hospitalized with a TBI had unmet (~20%) or unrecognized (~10%) health care needs during the first year after injury. Cognitive services were the most frequent type of service associated with unmet or unrecognized need. The health care needs of approximately half of the study sample changed between 3 and 12 months after injury. When factors that were associated with need were examined, only family functioning and insurance status were consistently related to unrecognized or unmet need at both 3 and 12 months after injury.

In general, our findings largely substantiate the results of Greenspan and MacKenzie6 in the following ways. First, both studies found a similar proportion of unmet/unrecognized need among children who were hospitalized with a TBI. Second, there was significant need for cognitive services in both study groups, although Greenspan and MacKenzie found a slightly higher unmet need for mental health services (22%) than cognitive services (16%). Finally, use of outpatient therapy services was similar between the 2 study cohorts. However, Greenspan and MacKenzie did report that a larger proportion of children visited a physician during the first year after injury (86%) compared with our study cohort (63%). That one third of our study children did not see any physician in the year after injury is important to highlight.

One of the recommendations that trauma center providers should make on hospital discharge is that the parent/primary caregiver schedule a visit with the child's pediatrician regardless of the post-acute services that the child may be receiving. On the basis of the large proportion of unmet and unrecognized needs in this group of children, it is recommended that pediatricians be involved in the post-acute care follow-up of children with TBI to ensure that the injured child's needs are being addressed in a timely and appropriate manner. In a previous paper, we demonstrated the validity of the PedsQL for measuring the health of children who are hospitalized with a TBI.8 Pediatricians could use this brief, easy-to-administer instrument to detect potential dysfunction in different health domains and follow-up with parents regarding the services that their child may or may not be receiving to address these problems.

Although the health care needs of the study sample were dynamic over time, approximately half of the children with unmet (48%) or unrecognized need (50%) at 3 months after injury remained with the same need at 12 months after injury. An additional 19% of those with met need at 3 months after injury reported unmet need at 12 months. There were also some notable improvements: 39% of children with unmet need and 25% of children with unrecognized need at 3 months after injury reported met need at 12 months. These results suggest that although it is difficult to predict accurately the future health care needs of children on the basis of their previous needs, children with unmet/unrecognized needs early in the post-acute phase should be identified and targeted because they are at high risk for continuing to have needs up to 1 year after injury.

Cognitive services were the most frequent cause of unmet and unrecognized need at both 3 and 12 months after injury. Many studies have shown that neurobehavioral deficits persist long after physical ones have resolved.2628 Therefore, the need for services to address cognitive deficits is likely to be greater than the need for services to address physical limitations. Moreover, among children with unmet needs, we found that the most frequent reasons reported by the caregiver for unmet need were that the service was not recommended by the physician or the school. These findings underscore the importance of screening and recognition of cognitive dysfunction or other health problems in the primary care setting for children who sustain a TBI.

Even when the potential need for cognitive services is addressed in the primary care setting, subtle cognitive deficits may not be detected by the child's pediatrician. In addition, educators may not identify cognitive problems. This lack of recognition of cognitive dysfunction and need for services is not surprising given that even in children who are evaluated, traditional psychoeducational measures are often not sensitive to deficits that are associated with TBI.2931 Moreover, educators often lack basic knowledge about the longstanding neurobehavioral deficits that are associated with TBI.32,33 Without careful evaluation from a professional with experience and training in brain injury, such as a neuropsychologist, deficits in children with TBI may not be fully appreciated.

Relatively few children with TBI receive special education services compared with the number who are estimated to need them, which suggests that there is a serious delivery gap between the needs of children with TBI and the health care and educational systems.5 In addition to identification problems, barriers to services for cognitive deficits may be exacerbated by ambiguity related to who is responsible or most appropriate for providing cognitive services. For example, the educational system may expect certain services to be provided by an outpatient therapist and vice versa. To ensure that the needs of children with TBI are met, health care professionals from within the community and the educational system need to work together.

When factors that were associated with unmet and unrecognized need were examined, family functioning and insurance status were the only 2 factors that consistently were associated with need at 3 and 12 months after injury. This is the first study to demonstrate a protective effect between normal family functioning and unrecognized need. Past studies have focused on the relationship between family functioning and health care utilization with conflicting results.10,21,22 In this study, children who came from families with good family functioning were significantly less likely to have unrecognized need during the first year after injury. Although other studies have found that family functioning influences health outcomes such as neurobehavioral recovery after pediatric TBI, this is the first study to suggest why family functioning influences outcome.34,35 Specifically, lack of appropriate service utilization (ie, unrecognized need) may explain why poorer outcomes have been noted among children with poorer family functioning. These results suggest that pediatricians and other health care providers who work with children with brain injury should assess family functioning and identify children who are from poorer functioning families, who may not realize that their children could benefit from additional services.

Insurance status was also a significant predictor of unmet need at 3 (borderline significant) and 12 months after injury. The caregivers of children who were insured by Medicaid were more likely to report unmet need compared with the caregivers of children with commercial insurance. Children with commercial insurance may have better access to health care services. In addition, they come from families of higher income, which may also give them access to more resources during the recovery process than children from low-income families. These findings are consistent with other research that revealed that children from lower income families have more unmet need than children from families with more financial resources.11,13,14

Other factors that were related to need changed over time. Children with a preexisting cognitive or emotional disorder were more likely to report unmet need during the first 3 months after injury compared with children without a preexisting psychosocial condition. This is likely for 2 reasons. First, because the caregivers of children with a preexisting psychosocial condition may be more aware of their children's difficulties, needs, and available services before injury, they are likely to be more sensitive to these issues after injury. In addition, children with a preexisting psychosocial condition are likely to have difficulties after injury. Previous studies have shown that children with preexisting psychiatric/behavioral disorders are at increased risk for developing psychiatric symptoms and disorders after TBI compared with children without a preexisting problem, and this also may explain the higher unmet need reported by the caregivers of these children.3638

At 3 months after injury, more unmet need was reported by female caregivers of the injured children compared with male caregivers. Previous literature suggested that women tend to report higher rates of illness and greater health service use for their own health-related concerns, which may explain the reporting difference by gender during the early post-acute phase.39 At 12 months after injury, nonwhite children were significantly more likely to have unrecognized needs compared with white children. Because nonwhite children were significantly more likely to come from low-income families with less education, it is likely that race is acting as a surrogate for a lack of financial resources or limited awareness of services that may help during recovery.

It is interesting that the severity of the TBI was not a significant predictor of health care needs during the first year after injury in our study cohort. Greenspan and Mackenzie6 noted that children with less severe TBI had the highest rates of unmet need, although the number of children was too small to test for statistical significance. In our study, children with unrecognized needs were significantly more likely to have sustained a minor TBI at 3 months after injury (but not significantly different at 12 months) compared with children with met needs; however, this relationship did not remain significant in the multivariate model after controlling for other factors. We did find that children with a major associated injury were significantly more likely to have unmet need at 12 months after injury compared with children who did not. Service utilization is usually more frequent during the early post-acute phase, and children with multitrauma may have a greater need in the later post-acute phase compared with children with single-system injuries.

The results of this study must be considered in light of the following limitations. First, service use, need, and reasons for need were not assessed by health care professionals or substantiated by medical record review. Instead, they were based on caregiver report, which may be inaccurate, especially for the report of services that are received through the school system. The limitations of relying on caregiver-reported unmet need were well articulated previously by Newacheck et al.17 Second, because we used the child's function to determine type of health care need, we could not examine the importance of function as a predictor of need. Third, our categorization of which services addressed different types of health domains may have been inaccurate. For example, when the child saw a physician, we assumed that he or she received services that addressed all 3 domains (physical, cognitive, and socioemotional). It would have helpful to have known what specific deficits were addressed by each health care provider. Fourth, whereas Dr Varni, the developer of the PedsQL, defines impaired HRQOL as 1 SD below the population mean, we used a more conservative definition of dysfunction (>2 SD below the population norms), so we may have underestimated the number of children with unrecognized needs.40 Fifth, we assessed only preinjury family functioning. Because family functioning can be affected by stressors that are associated with the injury, the relationship between service needs and postinjury family functioning and family burden should be explored further.41,42

Despite these limitations, the results of this investigation revealed that there is a significant amount of unmet and unrecognized need in the first year after TBI in children who stay overnight in the hospital, especially for cognitive services. In addition, children with Medicaid and those from more dysfunctional families are at higher risk for not getting the services that they need. Lower socioeconomic status and poor family functioning were associated previously with poor outcomes in children with TBI, and this study suggests that it may be related to inadequate receipt of post-acute care services. Vigilance on the part of primary care providers may help to identify and rectify injury-related problems that may be underappreciated and/or unaddressed. Moreover, because the health care needs of children with TBI change over time, it is important for pediatricians to monitor recovery and health care needs to ensure that children who have sustained a TBI receive the services that they need to restore their health after injury.


    ACKNOWLEDGMENTS
 
This study was funded by grant R49/CCR319701 from the National Center for Injury Prevention and Control of the Centers for Disease Control and Prevention.

CHAT Study Group: Melissa McCarthy, ScD, Ellen MacKenzie, PhD, Dennis Durbin, MD, Charles Paidas, MD, Mary Aitken, MD, MPH, Kenneth M. Jaffe, MD, Beth Slomine, PhD, Andrea Dorsch, PhD, James Christensen, MD, Ronald Berk, PhD, Eileen Houseknecht, RN, BSN, Susan Ziegfeld MSN, CRNP, Vinita Misra Knight, MPH, CSTR, Patricia Korehbandi, RN, MS, Donna Parnell, RN, MNSc, and Pat Klotz, RN, BSN.


    FOOTNOTES
 
Accepted Oct 11, 2005.

Address correspondence to Beth Slomine; PhD; Kennedy Krieger Institute; Neuropsychology; 707 North Broadway; Baltimore; MD 21205. E-mail: slomine{at}kennedykrieger.org

The authors have indicated they have no financial relationships relevant to this article to disclose.


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