Health Status of Children After Admission for Injury

* Department of Pediatrics, University of Arkansas for Medical Sciences, and Arkansas Childrens Hospital, Little Rock, Arkansas
Healthact, Inc, Boston, Massachusetts
| ABSTRACT |
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Objective. Injury is the major cause of death in children ages 1 to 19 in the United States and is a leading cause of morbidity. Few studies have described the impact of injuries on the health status of affected children over time or used newer, child-specific measures in this population. The objective of this study was to describe the health status of children in the 6 months after admission for injury using child-specific health status measures.
Methods. Injured children who were ages 3 to 18 years and admitted to an academic childrens hospital were evaluated at discharge and at 1 and 6 months after discharge with a battery of outcome measures. The Child Health Questionnaire (CHQ) measured health status. The scores on the Functional Independence Measure (FIM) or pediatric version of the FIM tracked physical function.
Results. A total of 195 children were enrolled. Boys outnumbered girls (67% vs 33%). Injury mechanisms and severity scores were typical of pediatric injury populations reported in other studies. Most (90%) children had at least 1 area of functional limitation by FIM at discharge, and 57% had some impairment at 1 month. By 6 months, 28% reported some limitation. At discharge, CHQ summary scores for the injury group were markedly depressed compared with normative populations. Differences in both physical health and psychosocial health summary scores between the injured and normal children persisted through 6 months of follow-up. Scores on 11 of 12 subscales were significantly below the normal population at discharge. This was particularly evident for bodily pain (injury group mean 49.1 vs normative mean 81.7) and parental impact-emotional (43.9 vs 80.3), and physical functioning (50.9 vs 96.1). Significant differences persisted in all subscales at 1 month and in 6 subscales at 6 months.
Conclusions. The CHQ provided useful information about the impact of injuries on children and their families over time. Significantly reduced scores in several domains of the CHQ highlight problem areas for injury patients, several of which persist through 6 months of follow-up. Low scores in areas of bodily pain and parental emotional burden suggest that improved management of these problems is required. Additional study of risk factors for persistent problems after injury may suggest ways to improve functional outcomes of injured children and reduce the impact on their families.
Key Words: pediatrics injury outcome morbidity Child Health Questionnaire
Abbreviations: CHQ, Child Health Questionnaire FIM, Functional Independence Measure JRA, juvenile rheumatoid arthritis ISS, Injury Severity Score HRQOL, health-related quality of life
| INTRODUCTION |
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Injury is widely recognized as a major public health problem for children, both as the leading cause of death in children ages 1 to 19 and as the cause of as many as 30 000 permanent disabilities annually.1,2 Despite this, surprisingly little has been published about the subsequent health status and degree of disability in the general pediatric trauma population. In adult populations with both head injury and other injury, significant long-term disability has been demonstrated. In several studies of adults with lower extremity fracture, for example, the persistence of disability and the return to premorbid activities was only partly related to injury type and severity.37 Much of recovery seemed to depend on preexisting family and social support. These studies suggest that the conventional assessment of clinical outcomes such as death rates, complication rates, and functional impairment is inadequate to assess fully the broader effects of injury and resulting disability on individuals and their families. This may be particularly true for children, who by virtue of their developmental status must be evaluated in the context of family structure and function.
Assessment of patient outcome after pediatric injury has focused on the most severely injured trauma patients. Wesson et al,8 using the Glasgow Outcomes Scale and other measures, found that more than half of severely injured children had persistent disability at 6 months. Harris demonstrated that 50% of children with severe multisystem injury demonstrated some sort of physical or cognitive problem 1 year after injury.9 Several studies have assessed the neuropsychological effect of head injury in children, but none has specifically addressed the outcomes of children after general trauma.1014 Few studies have objectively measured the impact of pediatric injuries on the affected families, especially using recently developed and well-validated general measures of health status, such as the Child Health Questionnaire (CHQ), that parallel those used in the adult population. The CHQ, introduced in 1996, is a child-specific instrument that addresses health status and quality of life more completely than previously available instruments. This study was conducted to describe the health status of children over 6 months after discharge after admission for trauma care using the CHQ and other measures.
| METHODS |
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Children who were 3 to 18 years of age and admitted to the Pediatric Trauma Service at Arkansas Childrens Hospital between January and December 1998 were eligible for inclusion in the study. Patients were excluded when no family member was able to complete an interview and self-administered questionnaires in English. Children were included only when at least 1 Abbreviated Injury Scale score was
2. The local Institutional Review Board approved the study protocol, and informed consent was obtained before enrollment. At discharge, family members of enrolled children were interviewed by 1 of 3 trained project team members. Demographic characteristics and descriptions of the injuries sustained were recorded. A battery of instruments were then administered to the parent of each child either in a self-administered written form or as an interview for those with limited literacy, as established by the Rapid Estimate of Adult Literacy in Medicine.15 Families were contacted by telephone and by mail at approximately 1 month and 6 months after discharge, and a similar battery of instruments was completed.
Physical functioning was assessed using the Functional Independence Measure (FIM) for children ages 7 and older and the pediatric version (WeeFIM) for younger children.16,17 The totaled FIM score was designed for use in tracking individual patient progress through rehabilitation, to help rehabilitation programs with administrative decision-making regarding personnel and equipment, and to provide information about process and outcomes of care for institutions. Consistent with other studies, we examined the motor and cognitive subtotals as continuous variables as well as the number of "areas of dependence" experienced by a patient.18,19 Areas of dependence are defined by a domain subscore of
5 in any area, representing the need for personal assistance by the patient. A nurse specialist from the rehabilitation service at Arkansas Childrens Hospital trained all project staff in WeeFIM administration, and the instrument was administered in person at discharge and by telephone at follow-up.
The 50-item parent-completed version of the CHQ (CHQ PF-50) was completed by a parent or guardian of each study participant at discharge and at each follow-up contact. The CHQ has been subjected to rigorous validation and reliability testing in children ages 5 to 18.20 The CHQ measures health over 14 domains, including general health perceptions, physical functioning, role/social physical functioning, bodily pain, role/social emotional functioning and role/social behavioral functioning, parent impact-time, parent impact-emotional, self-esteem, mental health, behavior, family activities, family cohesion, and change in health. Two summary scores of physical and psychosocial health status are calculated using 12 of the 14 domains. Normative data on a population of healthy children have been published for the CHQ along with information on several chronically ill populations (asthma, attention deficit disorder, epilepsy, psychiatric disorder, and juvenile rheumatoid arthritis [JRA]), making it possible to compare results in injured children with healthy and ill populations. The normative sample of 391 healthy children was obtained from large national surveys. In addition, information about the existence of a variety of medical conditions is collected as part of the CHQ.
Data were double entered for accuracy in an Access database and analyzed using SAS.21,22 Mean scores for the CHQ were derived using published SAS programs that were verified using test data sets included with the CHQ documentation. Differences between mean CHQ domain scores for the injury population and other populations of normal and chronically ill children were compared using t tests with P
.05 considered significant. In addition, for comparing subgroups of different severity within each of the CHQ subscales, a repeated measures analysis was performed with the subgroup as a fixed effect. SAS systems MIXED procedure was used with the correlation between a subjects measurements being a constant to the power of the time between the observations. Differences among subgroups were then examined at each time point (discharge, 1 month, and 6 months) using least square means.
| RESULTS |
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A total of 310 children aged 3 to 18 years met entry criteria for this study. Of these, 195 (63%) were enrolled, including 129 boys (66%) and 66 girls (34%). The racial mix of the sample included 158 (81%) white children, 34 (17%) black children, and 3 children (2%) of other races (Table 1). The median age for the group was 9.6 years, and patients stayed in the hospital an average of 9 days (range: 1125 days). Injury mechanisms were in most ways typical of pediatric injury populations reported in other studies, included 56 motor vehicle related (29%), 44 falls (23%), 12 bicyclists (8%), 13 pedestrians (7%), and 47 other injury mechanisms (24%). Somewhat surprising was that 23 of the injuries (12%) were related to all-terrain vehicles, reflecting the rural nature of the state. Injury severity was defined using the Injury Severity Score (ISS) and ranged from a low of 4 (a minimal score for entry into the study) to a high of 50. Most patients (48%) had ISS <9, whereas 15% had ISS >16. Head injuries were reported in 85 patients (44%), extremity injuries in 98 (50%), abdominal injuries in 22 (11%), and chest injuries in 17 (9%). Most injuries (N = 175 [90%]) were attributable to blunt rather than penetrating trauma. Burn injuries were not included in this sample.
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Characteristics of patients who met study criteria but did not participate in the study were examined. There were no statistically significant differences in demographic characteristics, injury mechanisms, or injury severity between the study group and those who did not participate.
Health status information was reported for 195 (100%) children at discharge, 173 (88%) at 1 month, and 141 (73%) at 6 months. Analyses of demographic and injury characteristics revealed no significant differences in demographic or injury severity characteristics between those lost to follow-up and the group with complete data over time. Patients who completed follow-up at 1 month, however, were more likely to have reported some disability at discharge (P
0.01). This difference was not evident at the 6-month follow-up.
The most frequent areas of disability on the FIM score at discharge were in bathing (reported by 86% of patients), climbing stairs (82%). and transfers to a tub or shower (80%). Fewer than 15% of patients were reported to have disability at discharge in any of the 5 cognitive domains. Although almost all (n = 191 [97%]) children had disability in at least 1 functional area at discharge, substantially fewer (59%) had any disability at 1 month. By 6 months, 63% of children reported no disability by FIM score, whereas 28% reported 1 to 3 functional areas affected. Only 10% of the children had disability in >3 areas of function at 6 months after discharge (Fig 1).
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The CHQ results for this general trauma population during the 6 months of follow-up are presented in Table 2. Mean scores for the injured children are compared with normative data for 12 CHQ domains.20 At both discharge and 1-month follow-up, injured patient scores for 11 of 12 domains and for both the physical and psychosocial summary scores were significantly lower than those for the normative population data. By 6 months, scores on several of the domains approached those of the normative population, but the scores for the domains of general health perceptions, physical functioning, role/social-physical, behavior, parental impact-emotional, and family activities remained depressed. Mean physical and psychosocial summary scores remain significantly lower than those of the normal population at 6 months, although the difference was less striking than at discharge and 1 month.
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When compared with the benchmark mean scores of chronically ill children,20 the overall health status of injured children at discharge is as bad as that for virtually any of the chronically ill populations for whom data are available. Parental emotional impact is worse than that for parents of children with seizure disorders and JRA. Physical functioning is comparable to or worse than each of the conditions, except for JRA.
The CHQ showed discrimination between injuries of different severity. Figure 2 shows the CHQ PF-50 mean scores at discharge for the injured children by level of injury severity. More severely injured children (ISS >16) demonstrate a pattern of generally lower scores at each point in time. At discharge, the mean scores were significantly worse for more severely injured children for physical functioning (P < .01), role emotional/behavioral (P = .01), mental health (P < .01), parent emotional impact (P < .001), and parental time impact (P < .01). Although these differences between severity categories were no longer evident at 6 months, these results suggest that the CHQ is valid in distinguishing between injury severity levels.
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| DISCUSSION |
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Health status measures that fully illuminate the impact of medical conditions in children not only must correspond to conventional clinical measures of outcome but also must reflect the unique characteristics of children in the appropriate social and developmental context. One reason that little assessment of health status has been done in the pediatric injury population is that, until recently, few reliable, validated instruments have been developed to measure health-related quality of life (HRQOL) in children. Most generic health status instruments measure functioning in domains relevant to adult patients, including function at work, for example, while ignoring potentially important areas for children, such as developmental progress, function within a family, school function, and impact on parents. Those instruments developed for use in the pediatric population, such as the Pediatric Evaluation and Disability Inventory or pediatric version of the Functional Independence Measure (WeeFIM), were designed for use primarily in chronically ill children.23,24 As such, they may not completely depict the health states expected for normal healthy children or for acutely injured children, most of whom would be expected to have previously been healthy. The CHQ, a more general measure, can be used effectively in both healthy and chronically ill groups of children.
This study is the first use of the CHQ in a prospective cohort of general pediatric trauma patients. Our results indicate that the impact of injury on the health status of affected children is profound and persists for at least 6 months after hospital discharge in a significant proportion of children. Furthermore, the impact of injury is measurable not only in predictable areas of physical functioning and role physical functioning but also in more subtle areas, such as behavior and self-esteem, at least in the short term.
In addition, although studies have shown that great financial and social costs are borne by families and it has been anecdotally understood that injury has multiple effects on the families of affected children, objective measures of this impact have not been available previously.9,25 The profoundly depressed mean scores for parental emotional and time burden from this general pediatric trauma population indicate that additional exploration of the needs of families is required. There may be opportunities for clinical interventions designed to support families during the months after hospitalization for injury that would result in measurable improvement in the health status of these children as assessed by the CHQ.
Our study has a number of limitations. Obtaining complete follow-up data for the population over 6 months proved challenging. One factor may have been the length of the CHQ. The CHQ was generally reported to be understandable by families and took approximately 20 minutes to complete. In the patients for whom there were missing data, it was usually because the entire questionnaire was omitted rather than parts of the form being left blank. When the form was returned, the data generally were complete.
There are some potential limitations to the current content of the CHQ in the injury population, particularly with regard to patients with traumatic brain injury. The CHQ has no domain specifically reflecting cognitive function. MacKenzie et al26 recently studied the analogous SF-36 in adult patients with brain and other injuries and found that without additional items directly pertaining to cognition, the instrument failed to reflect fully the cognitive problems in some patients with traumatic brain injury, specifically those with moderate to severe traumatic brain injury. Additional analyses of the CHQ in the brain injury population will be required to determine whether additional cognitive components are required.
The CHQ has been developed and tested on children ages 5 to 18. For our study, with the agreement of the developer, the instrument was used on patients as young as 3 years. Because injuries are a common and important problem for younger children, development of instruments appropriate for the assessment of HRQOL in infants and children younger than 5 years is needed. Furthermore, use of parental proxy reporting of childrens health status is widely known as a potential source of bias.27 Although the CHQ has an 87-item child-completed version available, it is appropriate only for adolescents and is too long to be widely applied. Instruments that allow for direct administration to younger children would provide valuable additional insight into the HRQOL of this group. Several instruments that are applicable to younger children, including the recently released Peds QL,28 which can be used in children as young as 2 years, and an infant and toddler version of the CHQ, currently in development, may address this need.20
We compared our population results with those published for a group of normal, healthy children. Although this is potentially problematic, such comparisons are unavoidable because it is impossible to obtain premorbid status on this population. Our injured population demonstrated somewhat higher levels of preexisting speech disorders than the normative population with which they were compared. Preexisting orthopedic problems were also reported at a higher rate, although often with a note from the parent that this reflected the acute injury under study. Preexisting attention and behavioral problems, known risk factors for injury, were reported in higher proportions than for the normative group, but the differences were not statistically significant. Some of the behavioral and mental health results of our study may be related in part to these premorbid conditions. Additional study of larger injury populations may be needed to establish a reliable benchmark for this group.
The CHQ was developed primarily for use in healthy and chronically ill children and has undergone extensive reliability and validity testing in these populations. It is important to assess its face validity with a population of acutely injured children to ensure that it is an appropriate measure for this group. Our findings indicate that the CHQ can discriminate between injuries of different severity. Additional assessment of the utility of the CHQ in the injury population, including assessment of the instruments discrimination between different injury types, especially head injury, is required. Finally, greater experience with this and other health status instruments in children will be required to understand fully the clinical significance of changes in these scores.
Injury has been demonstrated as a major public health problem for children, but without adequate measures of general health status, the true impact has been difficult to assess. The application of the CHQ in the acutely injured population in this study allowed us to describe the impact of injury in this group more fully than has previously been possible. Our results prompt even greater attention to ongoing efforts in primary prevention of injuries, optimizing acute treatment, and full assessment of the rehabilitation potential and needs of injured children and their families. With additional experience with the CHQ and similar general instruments for HRQOL, prospects for their use in tracking individual patients, in surveillance of injured populations, and in determining the impact of interventions in injury control will be great.
| CONCLUSION |
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Our study demonstrates that the CHQ can be a useful tool to evaluate recovery of injured children. The summary CHQ results in this study relate well with functional measures typically used to monitor recovery of injured children. In addition, significantly reduced scores in several domains of the CHQ highlight particular problem areas for pediatric injury patients. Low scores in specific areas of bodily pain in the first month after injury and parental emotional burden over 6 months of follow-up may indicate that improved management of these problems is required. Additional analysis of the performance of the CHQ in larger populations of injured children is required, as well as development of additional instruments or data elements to explore further the cognitive deficits associated with injury. Such studies will provide information that may improve functional outcomes of injured children and reduce the burden on their families.
| ACKNOWLEDGMENTS |
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This study was supported by grants from the Health Services and Resources Administration, Bureau of Maternal and Child Health (MCH 054003-01-0), and the Robert Wood Johnson Foundation, Generalist Physician Faculty Scholars Program (033946).
| FOOTNOTES |
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Received for publication Jul 20, 2001; Accepted Feb 4, 2002.
Reprint requests to (M.E.A.) Arkansas Childrens Hospital, 800 Marshall St, Slot 512-26, Little Rock, AR 72202-3591. Email: aitkenmarye{at}uams.edu
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PEDIATRICS (ISSN 1098-4275). ©2002 by the American Academy of Pediatrics
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