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OBJECTIVE: The purpose of this multicenter study was to confirm the validity and reliability of the Pediatric Cardiac Quality of Life Inventory (PCQLI). METHODS: Seven centers recruited pediatric patients (8–18 years of age) with heart disease (HD) and their parents to complete the PCQLI and generic health-related quality of life (Pediatric Quality of Life Inventory [PedsQL]) and non–quality of life (Self-Perception Profile for Children [SPPC]/Self-Perception Profile for Adolescents [SPPA] and Youth Self-Report [YSR]/Child Behavior Checklist [CBCL]) tools. PCQLI construct validity was assessed through correlations of PCQLI scores between patients and parents and with severity of congenital HD, medical care utilization, and PedsQL, SPPC/SPPA, and YSR/CBCL scores. PCQLI test-retest reliability was evaluated. RESULTS: The study enrolled 1605 patient-parent pairs. Construct validity was substantiated by the association of lower PCQLI scores with Fontan palliation and increased numbers of cardiac operations, hospital admissions, and physician visits (P < .001); moderate to good correlations between patient and parent PCQLI scores (r = 0.41–0.61; P < .001); and fair to good correlations between PCQLI total scores and PedsQL total (r = 0.70–0.76), SPPC/SPPA global self-worth (r = 0.43–0.46), YSR/CBCL total competency (r = 0.28–0.37), and syndrome and Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition-oriented scale (r = −0.58 to −0.30; P < .001) scores. Test-retest reliability correlations were excellent (r = 0.78–0.90; P < .001). CONCLUSIONS: PCQLI scores are valid and reliable for children and adolescents with congenital and acquired HD and may be useful for future research and clinical management.

OBJECTIVES. Mortality rates in pediatric patients with heart disease have decreased dramatically in recent decades, resulting in an increasing number of survivors with morbidities that impact quality of life. The purpose of this study was to assess and compare how heart disease affects the quality of life of the pediatric cardiac patient from the perspectives of the patient, parent, and health care provider. METHOD. Individual focus groups were conducted with children (8–12 years of age) with heart disease, adolescents (13–18 years of age) with heart disease, parents of children with heart disease, parents of adolescents with heart disease, and health care providers of pediatric patients with heart disease. A structured focus group technique was used to develop a list of potential items that might affect quality of life. Participants chose the 5 most important items from the list. These items were then categorized into preidentified dimensions (physical, psychological, social, school, and other). The percentages of the total votes for all items were calculated and distributions of responses across dimensions within group and within dimension across groups were reported and compared qualitatively. RESULTS. Patient and parent groups identified similar items as important. Providers identified different items. The physical limitation item received the largest percentage of total votes in all groups (9%–20%). Analysis across dimension revealed that those items related to the physical dimension received the highest percentage of total votes among all groups (30.2%–51.2%). Analysis within dimension revealed that patients endorsed items in the physical dimension more frequently than parents or providers. Within the psychological dimension, the children selected the fewest items relative to all other groups (7.2% vs 21.3%–37.8%), whereas health care providers endorsed these items more frequently than patients or parents (child or parent of child groups 7.2%–21.3% vs health care provider group 28.8%; adolescent or parent of adolescent groups 29.6% vs health care provider group 37.8%). Differences were noted between the child and adolescent groups in the psychological (child versus adolescent: 7.2% vs 29.6%) and school (child versus adolescent: 11.2% vs 2.1%) dimensions. CONCLUSIONS. Patients and parents generally agreed on how heart disease affects the quality of life of children and adolescents, whereas health care providers had a different opinion.

OBJECTIVE. The purpose of this study was to assess the health status and school-age neurodevelopmental progress of antiretroviral treatment (ARVT)–naive, HIV-infected Ugandan children who had been followed as part of cohorts of children born to HIV-infected and -noninfected mothers between 1989 and 1993. METHODS. Twenty-eight children, aged 6 to 12 years, vertically infected with HIV-1 and never treated with ARVT were evaluated in terms of health status, neurologic, and psychometric testing. A randomly selected group of 42 seroreverters and 37 HIV-1 negative children who were age- and gender-matched and who had been followed in the same cohorts were evaluated also. The families studied were homogenous in their socioeconomic status. None of the mothers or children had received ARVT or been exposed to illicit drugs. RESULTS. The HIV-infected children showed significantly more evidence of acute malnutrition. They also had more illness, especially parotitis, otitis media, upper respiratory infections, and lymphadenopathy. However, they did not differ significantly in neurologic and cognitive assessments when compared with age- and gender-matched seroreverter and HIV-negative children. They were in the normal range with respect to neurologic and psychometric development measures. CONCLUSIONS.These children seem to represent a significant subgroup of HIV-infected child survivors for whom the progress of the disease is less aggressive throughout early life. Given the fact that many infants, especially in developing countries, continue to be born without the benefit of perinatal ARVT, there will likely continue to be many older HIV-infected children in the same situation as those described in this follow-up study. They will not have been recognized as being HIV-infected. It is important that such children be identified and offered access to ARVT and other appropriate support services.

Objective. Although early detection and treatment of developmental delays can improve outcome, little is known about factors that influence how primary care physicians manage young children with probable developmental delays. The objective of this study was to describe physician referral practices for children with developmental delays and to test whether the probability of referral is increased by 1) the expression of parental concern; 2) female gender in a child with language delay; 3) disruptive, as opposed to avoidant behaviors; and 4) physician characteristics, including female gender or being a pediatrician.Methods. A cross-sectional survey was mailed to a national random sample of 800 pediatricians and 800 family practice physicians in primary care practice, using an experimental randomized block design. Recipients randomly received alternative variants of clinical vignettes, which differed only in regard to the variable specific to each of the first 3 hypotheses. Physicians answered questions about the likelihood of referral on a 5-point scale for listed referral options. Hypotheses were tested using multivariable logistic regression modeling. A total of 55% of pediatricians and 43% of family practice physicians returned the survey, for an overall response rate of 49%.Results. A girl with language delay was 60% more likely to be referred to audiology than a boy (odds ratio: 1.6; 95% confidence interval: 1.1–2.3), and respondents who were female or pediatricians were more likely to refer patients. The expression of parental concern did not increase the probability of referral to diagnostic and treatment services, and avoidant rather than disruptive patient behaviors were associated with an increased probability of referral.Conclusions. Patient gender and type of behavioral presentation seem to influence referrals to diagnostic and treatment services for young children with probable developmental delays described in clinical vignettes. These findings can guide targeted educational interventions to increase rates of detection and referral for young children with developmental delays.

Objective. Traumatic brain injury (TBI) often leads to long-term behavioral and cognitive deficits in children. However, little is known about the burden and psychosocial morbidity of pediatric TBI for families. The purpose of this study was to test the hypothesis that moderate and severe TBI in children has more adverse consequences than orthopedic trauma. Design. The sample was comprised of children between the ages of 6 and 12 recruited from hospital trauma and inpatient units including 53 with severe TBI, 56 with moderate TBI, and 80 with orthopedic injuries not involving central nervous system insult. Measures of injury-related burden, parental distress, and family functioning were administered to the child's primary caregiver at baseline assessment conducted soon after injury and at 6- and 12-month follow-ups. Multivariate repeated measures analysis of covariance was used to examine group differences in these outcomes over time. Results. Caregivers in the severe TBI group reported significantly higher levels of family burden, injury-related stress, and parental psychological symptoms than caregivers in the orthopedic injury group (ORTHO). The groups did not differ with respect to marital distress. Caregivers in the severe TBI group were significantly more likely than caregivers in the ORTHO group to exceed the clinical cutoff on the Brief Symptom Inventory and to report clinically significant levels of family dysfunction at follow-up. Conclusions. The findings suggest that severe TBI is a source of considerable caregiver morbidity, even when compared with other traumatic injuries. Caregivers in the severe TBI group had persistent stress associated with the child's injury, as well as the reactions of other family members, and a relative risk of clinically significant psychological symptoms nearly twice that of the ORTHO comparison group. These findings underscore the need for interventions that facilitate family adaptation after pediatric TBI.

To the Editor .— As pediatricians and psychologists who have conducted research involving children with failure to thrive (FTT) and/or treated literally thousands of children with FTT, we wish to share our concerns regarding the report “Failure to Thrive as a Manifestation of Child Neglect”1 from the American Academy of Pediatrics (AAP) Committee on Child Abuse and Neglect and Committee on Nutrition. Six aspects of the report are particularly troubling. First, the report does not make it sufficiently clear that FTT as a manifestation of child neglect represents a minority of children with FTT. We agree that, in some cases, FTT may be a marker of neglect and that the diagnosis of abuse and/or neglect should be considered if there is any history of “intentional withholding of food from the child; strong beliefs in health and/or nutrition regimens that jeopardize a child's well-being; and/or family that is resistant to recommended interventions despite multidisciplinary team approach.” Indeed, children with both FTT and neglect have lower cognitive skills initially and years after treatment …

In Reply .— We appreciate Dr Camp's comments and her emphasis of the importance of the high negative predictive value of the Bayley Mental Developmental Index (MDI). We agree that a normal MDI of >85 at 20 months' corrected age in an extremely low birth weight (ELBW) child is highly predictive of having a normal IQ of >85 at 8 years of age …

Objective. Relatively little is known about the longer-term impact of traumatic brain injury (TBI) on children’s daily functioning, especially the broader outcome domain referred to as health-related quality of life (HRQL). The objective of the present study was to examine the nature and predictors of HRQL outcomes in children with moderate to severe TBI an average of 4 years postinjury.Methods. The study used a concurrent cohort-prospective design involving postinjury assessments of 3 groups of traumatically injured children and their families including 42 with severe TBI, 42 with moderate TBI, and 50 with orthopedic injuries only. Parent and child perceptions of HRQL and child adaptive behavior measures were obtained along with parent descriptions of the child’s health problems and use of medical and mental health services. Predictors included indices of injury severity, social factors, and ratings of preinjury child behavior problems and school performance.Results. Based on parent report, adolescents who sustained severe TBI had lower HRQL related to overall psychosocial functioning and in the domains of behavior, mental health, general health, and family impact than adolescents who sustained orthopedic injuries only. Communication skills, daily living skills, and general adaptive functioning also were rated lower in the severe TBI group. In contrast to parent reports, adolescents with severe TBI did not rate their HRQL in most domains differently than did adolescents with orthopedic injuries. There were no group differences in frequency of persistent physical limitations. Sixty-seven percent of families of children with severe TBI used mental health counseling at some point after the injury. Risks for poorer HRQL outcomes were related to family social disadvantage and poorer preinjury child behavioral and academic functioning.Conclusions. Findings underscore the importance of using comprehensive measures of HRQL, along with traditional indicators of functional outcomes, when evaluating the longer-term impact of injuries in children. Identification of predictors suggests the need for close monitoring and intervention of high-risk children.

The adjustment of children with cystic fibrosis as rated by parents and teachers was compared to that of physically healthy siblings, normal children, and other chronically ill children. The findings indicated that children with cystic fibrosis achieved an age-adequate level of adjustment at home and school. Adjustment was largely unrelated to the severity of cystic fibrosis. As a group, chronically ill children had less adequate adjustment as rated by parents. However, severe adjustment problems were relatively rare. These findings are consistent with a growing body of literature which suggests that children with cystic fibrosis can cope reasonably well with life tasks and that emotional disturbance is not an inevitable consequence of the disease. Future studies of the cystic fibrosis population should study factors which differentiate adjusted from maladjusted children.