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Family Perception: Quality of Life Following a Child's Traumatic Injury

Schweer, Lynn H. RN, MSN, CNP; Cook, Becky S. RN, MSN, CNP; Bivens, Kim RN, MSN, CNP; Van Kuiken, Debra PhD(c), RN; Garcia, Victor F. MD; Falcone, Richard A. Jr MD

FEATURE
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ABSTRACT This prospective research study evaluated the parent's perception of their child's quality of life at 1 and 6 months following injury, using the Child Health Questionnaire to measure outcomes. At both 1 and 6 months postinjury, the physical summary and psychosocial summary scores were significantly lower than US norms for all levels of injury severity. Predictors of lower physical and psychosocial scores, such as the Injury Severity Score and specific location of injury, were determined. This study demonstrates the long-term impact of injury and validates the need for earlier intervention and anticipatory guidance for the child and family.

Lynn H. Schweer, RN, MSN, CNP, is Trauma Program Manager and Becky S. Cook, RN, MSN, CNP, is Trauma Nurse Practitioner, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio; Kim Bivens, RN, MSN, CNP, is a Nurse Practitioner, Charlotte, NC; Debra Van Kuiken, PhD(c), RN, is Senior Research Assistant, Center for Professional Excellence-Research, Department of Patient Services; Victor F. Garcia, MD, is Trauma Medical Director and Richard A. Falcone, Jr., MD, is Surgeon and Assistant Professor of Surgery, Trauma Service, Division of Pediatric and Thoracic Surgery, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.

Corresponding author: Lynn H. Schweer, RN, MSN, CNP, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH 45229 (e-mail: Lynn.Schweer@cchmc.org).

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PURPOSE

Injury continues to be the foremost source of childhood morbidity and mortality. Children younger than 19 years account for greater than 17,000 trauma deaths, 308,000 hospitalizations due to injury, and 9,500,000 injuries per year.1 In a continuing effort for a more sophisticated reporting system to assess the value of trauma care delivered, trauma centers in the United States are looking beyond traditional morbidity and mortality indices toward more comprehensive and long-term outcome measures.

Over the past 15 years, a variety of outcome measures and instruments have been used to quantify the child's condition following injury.2-6 Initial outcome studies have focused on the child with severe injuries, usually those children with severe traumatic brain injury.5,7,8 More recently, outcome studies have expanded to include minor and moderate injuries. Wesson et al9 demonstrated that greater than 50% of children with minor and moderate injures had some degree of physical limitation, whereas 13% of families reported disruption of normal life at 12 months postinjury.

Increasing attention has been directed to factors other than physical outcomes such as the psychological and the socioeconomic impact of pediatric injury upon the family structure. Posttraumatic stress disorder, once thought only to be present with catastrophic events, has been identified in 22% to 59% of children with minor and moderate injuries at 6 months postinjury.10,11 In addition, acute stress disorder with symptoms such as re-experiencing, avoidance, emotional numbing (eg, feelings of unreality or dissociation), and hyperarousal symptoms have recently been reported as a precursor to posttraumatic stress disorder in injured children.12

Historically, the lack of validated normative data has made measuring health-related outcomes in children challenging. However, the recent development of specific and general health-related quality of life (HRQOL) instruments has provided long-term follow-up data regarding physical and psychosocial outcomes. Holbrook et al13 directed one of the first large trauma outcome studies using a standardized HRQOL measurement tool. This adult study employed a Quality of Well Being Scale to report outcomes up to 18 months postinjury; thus establishing a model for measuring trauma outcomes. However, debate continues over whether a general or disease/condition-specific HRQOL instrument is the better measure. A general pediatric HRQOL instrument provides the advantage in that it can be used to demonstrate the burden of specific medical event/condition, such as traumatic injury, by covering a broad range of health concerns. The disadvantage of a general instrument is that few questions are specific in nature to the child's disease.14

Various factors have been examined for significance in predicting negative trauma outcomes in children. Historically, there are conflicting results as to the relationship between Injury Severity Score (ISS) and outcomes. Some studies found a correlation between high ISS and functional status,2,4 whereas other studies have found no direct correlation between the 2 factors.8,15 Macpherson et al16 concluded that mechanism of injury is a strong predictor for moderate to seriously injured children. As HRQOL instruments provide improved knowledge on long-term physical function and emotional impact, predictive factors take on new and vital importance in the clinical management of the injured patient.

Therefore, this prospective research study proposed to describe the pediatric quality of life at 1 and 6 months following traumatic injury by: (1) utilizing a general HRQOL instrument to explore the physical and psychosocial well-being of children and their family, and (2) analyzing the results of the HRQOL as well as specific characteristics of the injured child to identify predictors affecting physical/psychosocial well-being.

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METHODS

This was a repeated measures study at 1 and 6 months posttraumatic injury on the quality of life for children admitted to the Trauma Service at a mid-western level I American College of Surgeons (ACS) verified pediatric trauma center. In this study, HRQOL data were collected from parents and children 10 years and older. This article addresses only the parent-reported data.

Study eligibility included parents of children between 5 and 17 years old with an initial ICD-9 code between 800 and 959.9 and at least 1 diagnosed injury as evidenced by an Abbreviated Injury Scale (AIS) of 1 or greater. Study exclusion criteria included children who sustained an injury due to child abuse; parents/children with psychiatric disorders being treated by a psychiatrist; children not discharged to home; children who sustained a severe traumatic brain injury; and families who were unable to speak and read English. In addition, children with chronic conditions, such as cystic fibrosis, diabetes, and hemophilia, were excluded from the study population.

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Instruments

Demographic and injury-related data were obtained through the institution's trauma registry. Following patient discharge from the hospital, injury diagnoses were coded according to the ICD-9 codes and categorized into appropriate AIS body regions.17 The ISS was calculated from AIS and body regions data by Traumabase, a trauma registry computer software program produced by Clinical Data Management. This indicator of overall severity of injuries ranges from 1 to 75 with an ISS score of 75 indicating a nonsurvivable injury. For this study, the ISS was categorized as follows: (1) ISS 1-9 (minor); (2) ISS 10-14 (moderate); and (3) ISS ≥ 15 (severe). The patient's Glasgow Coma Score was also calculated by the trauma registry from clinical data obtained on the patient's hospital arrival. In addition to the calculated scores of ISS and Glasgow Coma Score, demographic elements such as age, gender, race, mechanism of injury, and location of injury (ie, AIS body region) were downloaded from the trauma registry.

The Child Health Questionnaire (CHQ) was developed for the purpose of measuring the well-being of children, the relative burden of disease, and the benefits of treatment.18 It is conceptually based on the belief that health has physical, mental, and social dimensions. The CHQ is available in several forms including a child-completed form and 3 parent-completed forms. The child form of the CHQ is completed by the child; however, the questionnaires are only valid for those children between the ages of 10 and 17 years. The parent form (CHQ-PF50) is designed for parents or guardian of children between the ages of 5 and 17 years. The CHQ-PF50 consists of 50 Likert-type items that are combined to represent the 13 domains as outlined by Ware.19 These domains are: physical functioning, role functioning-physical problems, general health perceptions, bodily pain, role/social- emotional-and behavioral functioning, parental impact-time, parental impact-emotional, general behavior, self-esteem, mental health, change in health issues, family activities, and family cohesion. Domain scores are used to calculate a psychosocial summary score (PSS) and a physical summary score (PHS).

Reliability of the CHQ-PF50 was reported from a normative sample, the multi-item subscale Cronbach alphas ranged from .66 to .94. Domain score internal reliabilities were at or above the suggested .70, except for the general health subscale (α =.66). Internal consistency values of the PSS and PHS were each .93 in the normative sample. Because the CHQ does not yield one total score, no internal consistency data are available for the entire instrument. Further psychometric testing of CHQ-PF50 has demonstrated both item scale correlations (91% at .40 or greater) and item discriminant validity (95% successful) in a US representative sample. Normative and benchmark data for the CHQ-PF50 represent a sample of noninstitutionalized children ages 5 to 18 (N = 391).18

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Procedure

This study was conducted after obtaining Institutional Review Board approval. Trauma nurse practitioners determined eligibility by reviewing the daily census and the patient's history, Monday through Friday. When possible, consent to participate from the parent/guardian was obtained during the child's hospitalization. When the research team was unavailable or when the family was not present with the injured children, consent was either obtained by verbal acquisition via phone or during a follow-up trauma visit at the hospital.

The parent/guardian completed the CHQ Parent Form (CHQ-PF50) at 1 month and 6 months postinjury. Measurements were obtained within a 10-day window (5 before and 5 after) of the 1-month or 6-month follow-up date. If the child was scheduled for a clinic visit within that time, the questionnaire was completed by the parent/ guardian during follow-up clinic visit. If the clinic visits did not fall within the 10-day window, data were obtained through scripted phone interviews done by a trained staff person.

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Data Analysis

All data were analyzed using SAS 8.2 for Windows. The comparisons of scores with US normative data and between 1-month and 6-month data were conducted using t test and paired t test, respectively. All tests were 2-tailed with the significance level set at.05.

Variables considered as possible predictors of PHS and PSS were patient's age, gender, race, mechanism, ISS, Glasgow Coma Score, and location of injury (AIS body sections of head/neck, face, chest, abdomen, extremity, and external). Because most of the children had multiple injuries, each injured part was coded separately in the analysis. Simple regressions were done to determine which variables significantly contributed to each of the dependent variables. These variables then were entered into multivariate regressions using a forward method. Regressions for PHS and PSS at 1 and 6 months were run as separate regressions.

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RESULTS

Patient Characteristics

Over a 3-year period, parent/guardian of 577 patients between the ages of 5 and 17 years were identified as eligible for the study with 358 families being enrolled. Forty-five percent (161/358) of parents completed the 1-month CHQ-PF50 questionnaire, whereas 36% (128/358) completed both the 1- and 6-month postinjury questionnaires (see Figure 1 for synopsis).

Figure 1

Figure 1

Injured children were primarily male; however, ages were evenly distributed between the 2 age groups (Table 1). The most common single mechanism was bike-related injury (27%); however, motorized-related injuries when combined accounted for 34% of the study population. As demonstrated in Table 2, half of the children sustained minor injuries and the remaining 50% sustained moderate/major injuries. Extremity injuries were reported in 65 patients (40%), abdominal injuries in 62 (38%), and head/neck injuries in 53 (33%). Over 75% of the study population sustained multisystem injuries. As burn patients are transferred to the local pediatric burn institution, no burn injuries are included in the study population.

TABLE 1

TABLE 1

TABLE 2

TABLE 2

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Questionnaire (CHQ-PF50) Results

Based on the parent questionnaire CHQ-PF50, the injured child's quality of life was significantly lower than that of the US norms in terms of both the PHS (P <.05) and the PSS (P <.05), at 1 month and 6 months postinjury (Table 3). The PHS and PSS were closer to normative data at 6 months; however, remained statistically lower than normative data. Comparison of PSS and PHS scores between 1 and 6 months postinjury indicates a statistically significant difference (P <.05) in both scores at 6 months, with both moving closer toward the US health norms.

TABLE 3

TABLE 3

The 13 domain scores were compared to normative data and between the 1-month and 6-month time points (Table 4). Scores from 9 domains were statistically lower at 1-month postinjury. Scores from 5 domains (family activities, mental health, parental impact-emotional, physical functioning, and emotional/behavioral) continued to be significantly lower than US national norms at 6 months postinjury.

TABLE 4

TABLE 4

The results of the regression analyses for PHS (physical) are shown in Table 5. At 1 month postinjury, ISS and injury to an extremity best predicted the PHS score. At 6 months postinjury, age, ISS, and injury to an extremity were significant for predicting a lower than normal PHS score in the final model, accounting for 63.0% of the variance in PHS. Regression analysis for PSS (psychosocial) showed that at 1 month, injury to head/neck and an injury to an extremity significantly predicted PSS (Table 6). However, at 6 months, injury to head/neck and injury to the abdomen were the best predictors of PSS. This final model accounted for 50.4% of the variance in PSS at 6 months.

TABLE 5

TABLE 5

TABLE 6

TABLE 6

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DISCUSSION

This study indicates that for at least 6 months after the child has sustained a traumatic injury, children and their families continue to experience significant physical and psychosocial impairments of quality of life. These findings corroborate the 1-month postinjury results of Winthrop et al15 and Aitken et al,20 who also utilized the CHQ to measure pediatric outcome following traumatic injury. All 3 studies demonstrate a significantly impaired quality of life due to physical limitations at 1 month postinjury.

As can be expected with a physical injury, the physical score at 1 month postinjury differed in greater proportion from the norm than the 1 month postinjury psychosocial score. Past studies which utilize other outcome and HRQOL instruments validate physical limitations for children after a traumatic injury frequently in the areas of self-care and mobility.4,6,16,21-23 However, a vast majority of these studies center on the severely injured child, frequently severe traumatic brain injury, and subsequent physical limitations which relate to the family.16,21,24-26

At 6 months postinjury, Winthrop et al15 concluded that although the PHS remained statistically low, the PSS was not significantly different than normative levels. This finding differs from the current study and the study by Aitken et al,20 which demonstrate continued psychosocial impairment of quality of life through 6 months postinjury. One possible explanation for this significantly low psychosocial summary score as compared to Winthrop's findings is that a larger percentage of multisystem patients (75% vs. 37%), as defined by more than 1 AIS body section (excluding external abrasions), were included in this current study population. Other differences between the current study versus Winthrop's study was a lower number of children with femur fractures (15% vs. 55%) and a higher percentage of school-age children between the ages of 5 and 9 years (49% vs. 32%). Although Winthrop's study did not demonstrate that the PSS was abnormally low at 6 months, this study did conclude that there was a significant burden on family as identified by the Impact on Family scale.15

At 6 months postinjury, the scale score, which represents the emotional impact of trauma upon the parent, continued to be profoundly lower than other scores. Historically, families of children with minor and moderate injuries are not educated on the possibility of long-term-physical and/or psychological sequela. When education does occur for families, it usually centers on the physical aspect, not the psychosocial aspects of injury. In addition, many children/families are not monitored by trauma personnel for long periods postdischarge, as trauma is usually deemed more of an acute injury. It is not uncommon for the child/family to have only 1 trauma clinic visit following discharge. When issues occur following discharge, parents frequently express feelings of isolation burdened by thoughts of helplessness and fear, all amplified by stress and the exhaustion of providing care for the injured child.27

Increased interest exists regarding the psychological conditions of acute stress disorder and posttraumatic stress disorder secondary to a traumatic injury. Both psychological conditions can affect the parent as well as the child. Winston et al12 reported that at 1-month postinjury, 88% of children and 83% of parents following a traffic-related injury commonly experienced at least 1 clinical symptom of acute stress disorder. Broad distress after injury was noted in 28% of children and 23% of parents, which Winston et al12 suggest should trigger additional counseling for posttraumatic stress disorder. This significant prevalence of psychological sequela in the population following a traffic-related injury supports the findings of this current study that the psychological effect of trauma is a significant factor postdischarge and should be addressed in a timely manner by healthcare professionals.

Data from other studies support the concept that ISS alone is not a strong predictor for outcomes; instead, ISS should be used in conjunction with a second indicator such as body section or mechanism of injury.4,8,16,28 Results from this study indicate that severe injuries with a high ISS that include an injury to an extremity have a greater impact on physical well-being at 1 month postinjury. At 6 months, age also becomes a factor, with the older children/adolescents with severe injuries including extremity reporting lower physical well-being. Numerous studies, both adult13,29 and pediatric,6,15,30 have also reported a significant negative quality of life outcome with lower extremity fractures, extending up to 6 months postinjury. Management of femur fractures has changed drastically in the past 5 years due to new methods of fixation, especially for children 4 to 12 years. Additional analysis of fracture management and timing of ambulation may assist in identifying unique aspects of fracture management that relate to outcomes.

This study also suggests that location of the injury may predict psychosocial well-being. The observation that head and neck injuries figured into both 1- and 6-month scores has not been documented in other CHQ studies. However, one could hypothesize that because children have frequent head injuries and both the head/neck area are a visible and vital component, injury to these structures would have some emotional implications. Psychosocial well-being at 1 month was also predicted by injury to an extremity; then at 6 months, an injury to the abdomen was a significant predictor. The findings concerning location of injury as a predictor of well-being must be interpreted with caution. No data concerning the extent or severity at each location were available and therefore may have introduced some bias in the results. Because children often had injuries in multiple locations, each location of injury was entered as a separate variable. This method of data entry and analysis may have resulted in locations of injury being more easily found to be significant predictors than would have resulted with a single variable representing location.

These study data demonstrate that minor, moderate, and severe injuries have a significant physical and psychosocial impact on the child and family through 6 months after injury. Importantly, it identified certain clinical predictors, elevated ISS and extremity and head or neck injuries, which can proactively identify children and families likely to experience untoward outcomes after traumatic injury. This knowledge, combined with the realization of the sustained effect of injury, supports the rationale for earlier intervention and preventive measures, possibly during the child's hospitalization or early postdischarge. This use of anticipatory guidance for children and families may assist in decreasing the negative psychological sequela experienced by many families.

To ensure that our study was not biased by patient selection, data were carefully analyzed for known confounders. First, given known potential racial differences in HRQOL assessments, it was confirmed that the percentage of African American children in the study was consistent with national census data (11.2% vs. 11.7%).31 Because other studies have indicated that severely injured children often have higher degrees of study participation,2,30 the percentage of participants with minor, moderate, and severe injuries was compared with national norms. National pediatric trauma data closely parallel the distribution of severity levels in this study population according to the National Trauma Data Bank, Pediatric Report 2004.32

There are several limitations to this study. As in many other HRQOL studies, significant noncompleter rates existed, specifically related to the length of follow-up.2,3,13,15,20,30 Due to the study design, patients were only enrolled during the weekday, leaving a weekend gap when children are frequently admitted. Additionally, length of time to administer the CH-PF50 was long, approximately 20 minutes, which could possibly have affected parent's participation in the study. To evaluate the possible effects of study dropout, characteristics of patients who signed consent then did not complete the study were compared to the population that completed both the 1-month and 6-month questionnaire to ensure that bias was not introduced into the study. There was no statistical difference in demographic characteristics, mechanism of injury, or ISS between the 2 groups, and thus, although a potential limitation, this did not likely affect the results.

Finally, this study is limited by the use of parent/guardian evaluation of child quality of life. Historically, parent's viewpoint is of great value; however, parents could easily overestimate or underestimate specific aspects of their child's well-being at any specific time during recovery. For example, an adolescent's peer-relations may be undervalued by the parent, while given much higher significance by the injured adolescent. Finally, a potential limitation is the lack of preinjury data for this population. Although it is possible that this population would have had preinjury HRQOL score lower than the US normative data, there is no reason to believe that this would be the case.

Future research should include continued refinement of predictors for children at risk for a low PHS and PSS. Eventually, the development and implementation of appropriate interventions, along with monitoring of outcomes, would be beneficial for children and their families. Controlling whether the injuries were intentional or unintentional may provide different outcomes and should also be investigated. Another area of research would be the comparison of parent and child's perceptions regarding HRQOL outcome measures. Several new HRQOL instruments are currently being developed for use in the pediatric population and warrant investigation.33,34

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CONCLUSION

This study has demonstrated that according to parent's report, the injured child's quality of life was significantly lower than US norms in terms of both the psychosocial and physical measures for at least 6 months postinjury. Additionally, important predictors of lower physical and psychosocial scores, such as ISS and specific location of injury, have been determined. This lower quality of life following injury not only occurs in the severely injured child, but also in children with minor and moderate injuries. This knowledge of the long-term impact of injury validates the need for earlier intervention and preventive measures for the child and family, possibly during the child's hospitalization or early postdischarge. Anticipatory guidance for children and families may assist in decreasing the negative psychological sequela experienced by many families.

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Keywords:

Child Health Questionnaire; CHQ; Outcome measures; Pediatric; Quality of life

© 2006 Lippincott Williams & Wilkins, Inc.