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Objectives This research examined whether individual and family-level factors during the transition from late childhood to early adolescence protected individuals from an increased risk of poor glycemic control across time, which is a predictor of future diabetes-related complications (i.e., health resilience). Methods This longitudinal, multisite study included 239 patients with type 1 diabetes and their caregivers. Glycemic control was based on hemoglobin A1c. Individual and family-level factors included: demographic variables, youth behavioral regulation, adherence (frequency of blood glucose monitoring), diabetes self-management, level of parental support for diabetes autonomy, level of youth mastery and responsibility for diabetes management, and diabetes-related family conflict. Results Longitudinal mixed-effects logistic regression indicated that testing blood glucose more frequently, better self-management, and less diabetes-related family conflict were indicators of health resilience. Conclusions Multiple individual and family-level factors predicted risk for future health complications. Future research should develop interventions targeting specific individual and family-level factors to sustain glycemic control within recommended targets, which reduces the risk of developing future health complications during the transition to adolescence and adulthood.

Treatment of electrophysiologic (EP) disease in pediatric patients has improved; however, the effects on quality of life (QOL) are unknown.The purpose of this study was to compare QOL within EP disease groups and to other congenital heart diseases, to evaluate the effects of cardiac rhythm devices on QOL, and to identify drivers of QOL in EP disease.Cross-sectional study of patient/parent proxy-reported Pediatric Cardiac Quality of Life Inventory scores (Total, Disease Impact, Psychosocial Impact) in subjects aged 8 to 18 years from 11 centers with congenital complete heart block (CCHB), ventricular tachycardia (VT), supraventricular tachycardia (SVT), and long QT syndrome (LQTS). QOL was compared between EP disease groups and congenital heart disease groups [bicuspid aortic valve (BAV), tetralogy of Fallot (TOF), and Fontan]. General linear modeling was used to perform group comparisons and to identify predictors of QOL variation.Among 288 patient-parent pairs, mean age was 12.8 ± 3.0 years. CCHB (μ = 83) showed higher patient Total QOL than other EP disease cohorts (P ≤ .02; LQTS μ = 73; SVT μ = 74). SVT (μ = 75) and LQTS (μ = 75) had lower patient Total scores than BAV (μ = 81; P ≤ .008). Patient/parent-proxy QOL scores for all EP disease groups were not different than TOF and higher than Fontan. The presence of a cardiac rhythm device was associated with lower QOL scores in LQTS (μ = 66 vs μ = 76; P.01). Predictors of lower patient/parent-proxy QOL included EP disease type (P ≤ .03), increased medical care utilization (P ≤ .04), and no parental college degree (P ≤ .001).Given the significant variation in QOL in EP disease type, stratification by EP disease type and increased medical care utilization may allow for targeted interventions to improve QOL.

Objective To identify trajectories of glycemic control over a period of 3 years in a pediatric sample of youth diagnosed with Type 1 diabetes transitioning to adolescence. A second aim was to examine a set of modifiable individual and family level baseline predictors of glycemic control group membership. Methods This multisite, prospective study included 239 children and adolescents (ages 9-11 years at baseline) diagnosed with Type 1 diabetes and their caregivers. Glycemic control was based on hemoglobin A1c (HbA1c) collected at 6-month intervals over a period of 3 years. Predictors of glycemic control membership included baseline global executive functioning, diabetes self-management, diabetes-specific family conflict, blood glucose monitoring frequency, and relevant individual and family level covariates. Results Group-based trajectory analyses were used to describe patterns of glycemic control from baseline to 36 months and 3 trajectories were identified: low risk (42.9%), elevated risk (44.6%), and high risk (12.1%) subgroups. Baseline maternal-reported family conflict, blood glucose monitoring frequency, and gender were significant predictors of glycemic control group membership. Higher levels of baseline family conflict, lower frequency of blood glucose monitoring, and female gender were associated with elevated and high-risk group membership. Conclusions These findings underscore the importance of examining trajectories of HbA1c across time. These results suggest that problematic trajectories of glycemic control are evident during the transition to adolescence. Furthermore, there are modifiable individual and family level characteristics that predict group membership and hence could be targeted in interventions to ensure adequate glycemic control is maintained over time and that risks for diabetes-related complications are reduced.

Managing the various treatment regimens for pediatric type 1 diabetes can be very difficult for many youth and their families, particularly during the transition from childhood to adolescence when self-management and glycemic control typically decline [1–6]. Self-management for type 1 diabetes is multifaceted and involves multiple domains of care, including but not limited to, complex insulin adjustments, dietary management, and treatment adherence (i.e., frequent blood sugar monitoring). Individual variation in an adolescents’ pattern of self-management may predict clinically relevant outcomes, especially glycemic control [7]. Consequently, measurement of individual differences in patterns of self-management can help to target specific areas to improve glycemic control and reduce future health complications [8–10]. Previous studies have shown that maladaptive patterns of diabetes self-management at a single point in time were associated with less adequate glycemic control among adolescents during the same time period [11, 12]. A number of previous research studies have been limited by the following methodological problems: 1) cross-sectional study designs, which did not allow prediction of glycemic control; 2) absence of a comprehensive assessment of family reporters (e.g., youth, maternal, and paternal) that provided reports of the adolescents’ self-management patterns; and, 3) no assessment of clinical relevance of glycemic control (e.g., whether glycemic control was within recommended clinical targets). To address these needs, this study examined if three distinct self-management patterns (i.e., maladaptive, moderate/mixed, and adaptive) identified in a pediatric sample of early adolescents with type 1 diabetes (see Rohan et al. [12]) predicted glycemic control six, 12, 18, and 24 months later. Sustaining adequate glycemic control over time is the primary goal of clinical management in pediatric type 1 diabetes [13]. However, many adolescents with Type 1 Diabetes have difficulty maintaining levels of glycemic control that are within the American Diabetes Association (ADA) recommendations [13] for children and adolescents (i.e., Hemoglobin A1c (HbA1c) < 8% ages 6–12 years and < 7.5% ages 13–19 years) [1, 10]. There is substantial evidence that diabetes self-management patterns influences glycemic control: those with poor diabetes self-management skills across one or more domains of diabetes care often have worse glycemic control compared to those with higher, more adaptive self-management patterns who follow healthcare provider recommendations for exercise, diet, blood sugar testing and management, and insulin administration [5, 7, 11, 12, 14]. Thus, we hypothesized that across reporters the baseline maladaptive self-management group [12] would have worse glycemic control across time compared to the baseline moderate/mixed and adaptive self-management groups [12]. We also hypothesized that those in the maladaptive and moderate/mixed self-management groups at baseline, would have clinically significant HbA1c values that were above the age-based ADA recommendations six to 24 months later [12]. A second contribution of our study was to document stability and change in clusters of self-management and prediction of glycemic control over time. This is important because the efficacy of self-management and glycemic control have been shown to decline among adolescents with type 1 diabetes [1–6] but prospective studies have not described stability and change in patterns of self-management over time. To address this issue, we examined if: 1) the self-management patterns (all reporters) that were observed at baseline (see Rohan et al. [12]) were consistent with those self-management patterns observed at one and two years and then examined how these changes in self-management patterns predicted glycemic control at later points in time; 2) whether early adolescents’ self-management patterns remained stable over time or became more/less adaptive; and, 3) if self-management patterns observed at one and two years post-baseline predicted mean differences in subsequent HbA1c over time. We hypothesized that: 1) there would be three distinct self-management groups at one and two years post-baseline (i.e., maladaptive, moderate/mixed, and adaptive) that were similar to those obtained at baseline; and, 2) based on the above rationale that those with maladaptive self-management patterns at one and two years post-baseline would have worse glycemic control over time.

Background Surgical complexity and related morbidities may affect long‐term patient quality of life ( QOL ). Aristotle Basic Complexity ( ABC ) score and Risk Adjustment in Congenital Heart Surgery ( RACHS ‐1) category stratify the complexity of pediatric cardiac operations. The purpose of this study was to examine the relationship between surgical complexity and QOL and to investigate other demographic and clinical variables that might explain variation in QOL in pediatric cardiac surgical survivors. Methods and Results Pediatric Cardiac Quality of Life ( PCQLI ) study participants who had undergone cardiac surgery were included. The PCQLI database provided sample characteristics and QOL scores. Surgical complexity was defined by the highest ABC raw score or RACHS ‐1 category. Relationships among surgical complexity and demographic, clinical, and QOL variables were assessed using ordinary least squares regression. A total of 1416 patient–parent pairs were included. Although higher ABC scores and RACHS ‐1 categories were associated with lower QOL scores ( P QOL scores was poor to fair ( r =−0.10 to −0.29) for all groups. Ordinary least squares regression showed weak association with R 2 =0.06 to R 2 =0.28. After accounting for single‐ventricle anatomy, number of doctor visits, and time since last hospitalization, surgical complexity scores added no additional explanation to the variance in QOL scores. Conclusions ABC scores and RACHS ‐1 categories are useful tools for morbidity and mortality predictions prior to cardiac surgery and quality of care initiatives but are minimally helpful in predicting a child's or adolescent's long‐term QOL scores. Further studies are warranted to determine other predictors of QOL variation.

Large numbers of children and adolescents have conditions that affect the CNS and disrupt normal brain development due to genetic and environmental factors (e.g., fetal alcohol syndrome), trauma, or chronic illness (Yeates, Ris, Taylor, & Pennington, 2010). Such problems have multifaceted effects on the child’s cognitive, emotional, and social development, health-related quality of life (HRQOL), and on family functioning. Pediatric psychologists provide assessment and interventions to children and adolescents with these conditions and their families and conduct research that characterizes the impact of these problems. Such research provides important data that describe the impact of various neurological conditions, including the role of risk and protective factors on psychological outcomes. These data are critical in targeting interventions to reduce the risk for a wide range of problematic psychological outcomes. Despite the importance of such research for enhancing the psychological outcomes of children and adolescents with conditions that involve the CNS, this work has been underrepresented in published work in the Journal of Pediatric Psychology. This special section was invited to address this need. Taken together, the contributions to this special section have advanced scientific knowledge concerning the psychological outcomes of children and adolescents with conditions that involve the CNS. The purpose of this introduction is to summarize key points and consider the implications for future research.

Rohan JM, Delamater A, Pendley JS, Dolan L, Reeves G, Drotar D. Identification of self-management patterns in pediatric type 1 diabetes using cluster analysis. Objectives: This study identified three distinct patterns of self-management groups for a sample of 239 youth (9–11 years) with type 1 diabetes and their maternal and paternal caregivers, and assessed their relationship to glycemic control (HbA1c). Methods: Youth and their maternal and paternal caregivers were administered the diabetes self-management profile (DSMP) to assess self-management. Glycemic control was based on hemoglobin A1c. Results: Two-step cluster analysis identified three different self-management groups based on youth, maternal, and paternal reports. Analysis of variance indicated that the pattern of less optimal diabetes self-management was associated with worse glycemic control. Conclusion: Our results objectively describe differences in patterns of self-management in youth with type 1 diabetes, that relate to glycemic control. Interventions based on these specific patterns of self-management may improve diabetes management and enhance glycemic control in children and adolescents with type 1 diabetes.

OBJECTIVE This report describes an intervention to promote medication adherence and treat comorbid psychological symptoms in a 17 year-old female with Fanconi Anemia. The patient presented with a typical adherence rate estimated at 25% and self-reported symptoms of depressed mood and anxiety. METHOD Our comprehensive treatment approach integrated electronic monitoring (EM), an emerging strategy for adherence promotion, and motivational interviewing (MI) within an evidence-based cognitive-behavioral therapy (CBT) framework. We used EM data to assess and track medication adherence. The therapist reviewed these data with the patient and family in session and used MI techniques to promote health behavior change. We analyzed changes in adherence rates over time using a time series analysis (Auto-Regressive Moving Average [ARIMA]). In addition, the patient and her mother reported on depression, anxiety, and quality of life at intake and after 12 months, and the therapist treated psychological symptoms with CBT. RESULTS The average adherence rate during the baseline EM phase was ~53%. The mean adherence rate across treatment was ~77%, and after 17 months, the final weekly adherence rate was 82%. Adherence rates significantly improved over the treatment period, ARIMA t = 36.16, p < .01. CONCLUSIONS EM feedback and MI are viable additions to CBT to promote medication adherence in adolescence. This approach has the potential to effectively treat adolescents with adherence problems and psychological symptoms across multiple chronic illness diagnoses, and ultimately to improve health and quality of life outcomes.

Ingerski LM, Laffel L, Drotar D, Repaske D, Hood KK. Correlates of glycemic control and quality of life outcomes in adolescents with type 1 diabetes. Background: A major focus of pediatric multidisciplinary diabetes care is promoting glycemic control (A1c) while ensuring high quality of life (QOL). The current study investigated factors associated with A1c and QOL using a methodology that considered these variables as simultaneous outcomes. Method: A total of 261 adolescents (aged 13–18) with type 1 diabetes completed measures of blood glucose monitoring (BGM) frequency, diabetes-specific QOL, negative affect, and depression. Caregivers completed measures of demographic and disease characteristics, depression, and family conflict. Results: A1c was negatively correlated with QOL (r = −0.18 to −0.29, p < 0.01) across all subscales. Based on clinical A1c goals and median QOL scores, adolescents fell into four glycemic control–QOL groups. Multinomial logistic regression determined correlates of group membership utilizing adolescents with suboptimal glycemic control–low QOL as the referent group. Adolescents with optimal glycemic control–high QOL reported increased BGM frequency (OR = 1.87), less negative affect (OR = 1.32), and were more likely to use CSII (OR = 5.41). Adolescents with optimal A1c–low QOL reported greater BGM frequency (OR = 1.91) and shorter disease duration (OR = 1.09). Adolescents with suboptimal glycemic control–high QOL reported greater BGM frequency (OR = 1.41), fewer depressive symptoms (OR = 1.13), and less negative affect (OR = 1.31). Conclusions: Results reveal disease, management, and psychosocial characteristics that differentiate glycemic control–QOL outcome groups and identify risk factors related to this relationship. Further appreciation of these characteristics may increase clinicians' understanding and attention to these important clinical outcomes and help tailor the most appropriate interventions (e.g., individual psychotherapy vs. family problem-solving interventions) to help adolescents achieve glycemic control without sacrificing QOL.

OBJECTIVE To review interventions with adherence-promoting components and document their impact on glycemic control via meta-analysis. RESEARCH DESIGN AND METHODS Data from 15 studies that met the following criteria were subjected to meta-analysis: 1) randomized, controlled trial, 2) study sample included youth aged RESULTS The 15 studies included 997 youth with type 1 diabetes. The mean effect size for pre- to posttreatment change for the intervention versus control group comparison was 0.11 (95% CI −0.01 to 0.23). This is a small effect, demonstrating very modest improvements in glycemic control. However, analysis for the pre- to posttreatment effects for the intervention group alone did show significant variability [Q(14) = 33.11; P < 0.05]. Multicomponent interventions, those that targeted emotional, social, or family processes that facilitate diabetes management, were more potent than interventions just targeting a direct, behavioral process (e.g., increase in blood glucose monitoring frequency). CONCLUSIONS Interventions that focus on direct, behavioral processes and neglect emotional, social, and family processes are unlikely to have an impact on glycemic control; multicomponent interventions showed more robust effects on A1C. Future clinical research should focus on refining interventions and gathering more efficacy and effectiveness data on health outcomes of the pediatric patients treated with these interventions.

OBJECTIVE The primary aim of the study was to investigate the relationship among executive functioning, diabetes treatment adherence, and glycemic control. RESEARCH DESIGN AND METHODS Two hundred and thirty-five children with type 1 diabetes and their primary caregivers were administered the Diabetes Self-Management Profile to assess treatment adherence. Executive functioning was measured using the Behavior Rating Inventory of Executive Functioning and glycemic control was based on A1C. RESULTS Structural equation modeling indicated that a model in which treatment adherence mediated the relationship between executive functioning and glycemic control best fit the data. All paths were significant at P < 0.01. CONCLUSIONS These results indicate that executive functioning skills (e.g., planning, problem-solving, organization, and working memory) were related to adherence, which was related to diabetes control. Executive functioning may be helpful to assess in ongoing clinical management of type 1 diabetes.

Nonadherence to treatment is an important influence on the health outcomes of children and adolescents with pediatric asthma, which is the most prevalent childhood chronic illness. Because the factors that influence treatment adherence for pediatric asthma are not well understood, a comprehensive review of relevant research is needed. To address this need, research concerning the correlates and predictors of adherence to inhaled corticosteroid treatment for pediatric asthma was reviewed. Significant predictors and correlates of treatment adherence identified in this review were consistent with a conceptual model that included family demographic characteristics and functioning, parent and child characteristics, health care system and provider characteristics, and child health outcomes. Family functioning and parental beliefs about asthma and medication treatment demonstrated consistent relationships with treatment adherence. Future research should test multivariate models of influences on treatment adherence in pediatric asthma in prospective studies using reliable and valid measures of predictors and outcomes. Intervention studies are also needed that target potentially modifiable, empirically supported influences to enhance treatment adherence. The clinical management of pediatric asthma would be enhanced by routine assessment of barriers to treatment adherence and anticipatory interventions that address them to prevent nonadherence.

High rates of asthma treatment nonadherence have been reported, particularly in economically disadvantaged African American youth. The relationship between adherence to combined medication treatment and asthma outcomes has potential clinical significance but is not well understood. Using electronic monitoring, we describe the pattern of adherence to daily corticosteroid (fluticasone) and leukotriene receptor antagonist (montelukast) medication over the course of 1 year in a population of African American youth with moderate to severe asthma. On average, adherence to montelukast was higher than adherence to fluticasone (p0.01); however, for both medications, adherence rates significantly declined over the course of the study. After 1 year, participants took only 31% of prescribed doses of montelukast and 23% of prescribed doses of fluticasone. The decline in adherence to both fluticasone (p0.05) and montelukast (p0.001) was related to increased healthcare utilization. Furthermore, asthma symptom ratings were related montelukast (p0.001), but not fluticasone adherence. These results suggest that adherence promotion intervention strategies are warranted to improve health-related outcomes in families who are at-risk for treatment nonadherence.

Objectives The primary aims of the study were to: (a) describe the trajectories of adherence to daily inhaled corticosteroid (ICS) medication for a year in economically disadvantaged, African-American youth with asthma based on growth curve modeling; and (b) test the relationship of treatment adherence to symptom control, quick-relief medication, and healthcare utilization. Methods This prospective study measured adherence to daily ICS treatment using electronic monitoring in 92 children and adolescents with moderate to severe asthma for 9–12 months and assessed clinical outcomes, including asthma-related symptoms, quick-relief medication, and healthcare utilization. Results Youth showed a decrement in treatment adherence to less than half of prescribed corticosteroid treatment over the course of the study, which related to increased healthcare utilization (p < .04), but not to asthma symptoms or albuterol use. Conclusion Economically disadvantaged youth with asthma demonstrate high rates of chronic nonadherence that warrant identification and intervention to reduce asthma-related healthcare utilization.

To improve physician communication with parents using a physician-directed intervention (PDI), emphasizing a sequenced approach to the informed consent conference (ICC) for childhood leukemia clinical trials in which physicians discuss diagnosis, prognosis, and treatment prior to the offer of a clinical trial.Physicians and fellows at the Children's Hospital of Philadelphia and Children's National Medical Center were recruited to participate in Informed Consent Seminars and subsequent half-day booster sessions. Training was followed by a multisite study of informed consent communication. Real-life ICCs were observed and audiotaped, and parents were interviewed after the ICC to ascertain their understanding. Data from the ICC and interview were then coded and analyzed. Trained physician performances were compared with untrained physicians (controls) at two other research sites. Data were collected from 2003 to 2007 at PDI sites and control sites for comparison.A total of 102 cases were included for initial analyses, with 60 cases from the PDI sites and 42 control cases. Fifty-nine cases were included in the final analysis. Findings revealed that trained physicians followed the sequenced approach more often when compared with controls. Similarly, physicians at the PDI sites tended to elicit parental questions and understanding in an open-ended way and clarify parents' questions more frequently than physicians at the control sites.Academic physicians who are involved in the current transformation of clinical research should be trained to conduct effective ICCs. The "see one, do one, teach one" approach is no longer adequate for informed consent.

Objective This study examined associations among adolescent sleepiness, sleep duration, variability in sleep duration, and psychological functioning (symptoms of anxiety, depression, externalizing behaviors, and perceived health). Methods This was a cross-sectional analysis of data from a community-based cohort study of sleep and health. Participants were 247 adolescents (48.6% female, 54.3% ethnic minority, mean age of 13.7 years). Sleep duration and variability in sleep duration were measured by actigraphy and sleepiness was measured by adolescent questionnaire. Primary outcomes were measured by parent, teacher, and adolescent questionnaires. Results Sleepiness was associated with higher scores on measures of anxiety (Adjusted partial r2 = .28, p < .001), depression (Adjusted partial r2 = .23, p < .001), and perceived health (indicating more negative outcomes) (Adjusted partial r2 = .19, p < .01). Significant associations between sleep duration or variability in sleep duration with psychological variables were not found. Conclusions Findings highlight the inter-relationships between sleepiness and psychological functioning and the potential importance of addressing sleepiness in health and psychological evaluations of adolescents.

Objective The current study investigated the daily relationship between pain, activity restriction, and depression in children and adolescents with chronic pain, and compared participants' responses on diary and retrospective assessment measures. Method Data collection included the administration of diary and retrospective measures of pain, activity restriction, and depression to 93 children with recurrent headache, juvenile chronic arthritis, and sickle cell disease. The study used hierarchical linear modeling to examine the relationship between daily pain and activity restriction, and analyses compared participants' responses on diary and retrospective assessment measures. Results Using diary measures, daily pain intensity was related to children's levels of activity restriction. Diary completion was predicted by age and diary-type, with younger children and children using electronic diaries demonstrating higher compliance. Pain intensity was significantly higher on retrospective compared with diary measures, demonstrating inflation in retrospective reports of pain. No significant differences between measures of activity restriction emerged. Discussion These preliminary results suggest that although retrospective reports of activity restriction may be an acceptable alternative to daily diary assessment for children with chronic pain, retrospective measures of pain intensity may show inflated pain levels. To provide support for the findings, longitudinal research comparing responses to diary versus retrospective measures is recommended.

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.

To describe the prevalence of behavioral problems and symptomatology suggestive of Autism and Asperger's disorders at age 8 years among extremely low birth weight (ELBW,1 kg) children, born 1992 through 1995.Parent reports of the behavior of 219 ELBW (mean birth weight, 810 g; gestational age 26 weeks) were compared with 176 normal birth weight children of similar maternal sociodemographic status, sex, and age. Behavior was assessed via the Child Symptom Inventory that includes both Symptom Severity Scores and scores meeting DSM-IV criteria for disorders.ELBW compared with normal birth weight children had significantly higher mean Symptom Severity Scores for the inattentive, hyperactive, and combined types of attention-deficit hyperactivity disorder (all p.001) as well as higher scores for Generalized Anxiety (p.01) and Autistic (p.001) and Asperger's (p.01) disorders. When DSM-IV criteria were considered, ELBW children also had significantly higher rates of attention-deficit hyperactivity disorder of the inattentive (10% vs 3%, p.01) and combined (5% vs 0.6%, p.05) types.Attention-deficit hyperactivity disorder, mainly the inattentive type is prevalent among ELBW children. Our findings of an increase in symptoms pertaining to Autistic and Asperger's disorders at school age agree with recent reports of others during early childhood. Early identification and intervention for these problems might improve child functioning and ameliorate parent and child distress.

Background In order to determine the number of short-term side effects and late effects discussed during an informed consent conference (ICC) after the diagnosis of acute leukemia, we observed the occurrence(s) and the ratio between short-term side effects versus late effects during an ICC. Procedure ICC(s) of childhood leukemia trials were audio-taped at six different study sites. The side effects mentioned during each of these ICC(s) were coded and analyzed. Results One hundred forty cases were reviewed, from which we coded a total of 3,173 acute side effects and 242 late effects. The mean total side effects mentioned during each ICC was 24 (range 5–47). The number of late effects coded were significantly less than acute side effects. We also found that the duration of ICC(s) was positively correlated with the number of side effects mentioned. In addition, the frequency of total side effects mentioned was independent of patient or parent demographic factors. Conclusions Our results show that acute side effects are often mentioned but the discussion of late effects is much less frequent in the initial ICC(s). Careful consideration regarding the ratio of acute and late effects that are communicated to parents in the context of the ICC may facilitate parental understanding of clinically relevant side effects. Pediatr Blood Cancer 2009;52:497–502. © 2008 Wiley-Liss, Inc.

Unlike previous investigations of shelter-based samples, our study examined whether profiles of adjustment problems occurred in a community-program–based sample of 175 school-aged children exposed to domestic violence. Cluster analysis revealed three stable profiles/clusters. The largest cluster (69%) consisted of children below clinical thresholds for any internalizing or externalizing problem. Children in the next largest cluster (18%) were characterized as having externalizing problems with or without internalizing problems. The smallest cluster (13%) consisted of children with internalizing problems only. Comparison across demographic and violence characteristics revealed that the profiles differed by child gender, mother’s education, child’s lifetime exposure to violence, and aspects of the event precipitating contact with the community program. Clinical and future research implications of study findings are discussed.

Family conflict affects the expression of psychopathology in youth. This study investigated whether family conflict moderates response to medication in youth with bipolar disorder.Youth ages 5-17 years diagnosed with bipolar I or II disorder were recruited from a trial of combination therapy with divalproex and lithium. Mania and depression were assessed at baseline and after 8 weeks of treatment using the Young Mania Rating Scale (YMRS) and the Children's Depression Rating Scale-Revised (CDRS-R). Parents completed the Family Assessment Device (FAD). Ordinary least-squares regression evaluated whether family conflict contributed to YMRS/CDRS-R outcomes controlling for severity of baseline mood.In 55 youths, the model examining family conflict and CDRS-R outcomes showed that family conflict variables accounted for 10% of the variance in CDRS-R scores after 8 weeks of treatment. The final model was statistically significant. The FAD Problem Solving subscale was the only uniquely significant predictor of CDRS-R scores after 8 weeks of treatment. Family conflict did not predict YMRS outcomes.There is a significant relationship between family problem solving and depressive symptoms that persist despite pharmacotherapy. Although depression severity was mild at baseline, it persisted despite pharmacological treatment in youths whose families endorsed higher levels of conflict.

The objective of this study was to describe the prevalence and correlates of adherence to divalproex sodium (DVPX) and lithium carbonate (Li) combination treatment during the initial stabilization treatment phase.Adherence to Li/DVPX combination therapy was measured by the presence or absence of minimum serum concentrations of DVPX (50 microg/mL) or Li (0.6 mmol/L). Secondary measures included pill count, patient/parent report, and clinical judgment. Correlates of adherence, including patient characteristics, medication side effects, and family variables, were evaluated.One hundred seven patients (70 males and 37 females) were studied. The proportion of serum concentrations in the therapeutic range across the study period was 0.84 for DVPX and 0.66 for Li. Maternal (r = -0.31; p.01) and paternal (r = -0.44; p.01) hospitalization for a psychiatric disorder and less adaptive family functioning (r=-0.26; p.05) related to treatment nonadherence for DVPX. Better treatment adherence to DVPX (r = 0.21; p.05) and Li (r = 0.23; p.05) was associated with a greater number of side effects, whereas male sex was associated with worse adherence to both DVPX (r= -0.24; p.05) and Li (r = -0.22; p.05) pharmacotherapy. Clinical response to treatment correlated with adherence to DVPX treatment (r = 0.33; p.01).Nonadherence may limit the statistical power of treatment efficacy studies and the effectiveness of pharmacotherapy treatment for juvenile BPD and necessitate strategies to evaluate and enhance levels of treatment adherence.

This study examined the health-related quality of life (HRQOL) of children with Inflammatory Bowel Disease (IBD) compared with physically healthy children and the impact of IBD and steroidal side-effects on children's HRQOL. The HRQOL of 49 children and adolescents (ages 10 to 18 years) with IBD and their parents who completed the Child Health Questionnaire (CHQ; Landgraf & Abetz, 1997; Landgraf, Abetz, & Ware, 1996) was compared to that of a sample of physically healthy children (N = 49). Caregivers of children with IBD reported that their children's physical and psychological health were more limited and that they experienced more emotional worry and greater impact on their personal time compared to caregivers reporting on healthy same-age children. Children and adolescents reported worse HRQOL than physically healthy children in only one domain: general health. Children and adolescents with more IBD-related and steroidal symptoms had less adequate HRQOL as reported by their parents. Limitations in HRQO...

A cumulative risk framework was used to examine the impact of the presence of multiple risk factors on key asthma outcomes (i.e., health-related quality of life [HRQoL], severity) for a sample of 149 inner-city African-American youth with asthma. The presence of a greater number of risk factors was associated with lower HRQoL and greater severity, regardless of age or gender. Cumulative risk methodology, in combination with selection of risk factors based on theoretical and empirical work, is a viable option for researchers and clinicians who are interested in examining the impact of multiple risk factors on disease functioning and status.

Objective This study described the prospective relationship between pharmacological and behavioral measures of 6-mercaptopurine (6MP) medication adherence in a multisite cohort of pediatric patients diagnosed with cancer (N = 139). Methods Pharmacological measures (i.e., metabolite concentrations) assessed 6MP intake. Behavioral measures (e.g., electronic monitoring) described adherence patterns over time. Results Three metabolite profiles were identified across 15 months: one group demonstrated low levels of both metabolites (40.8%) consistent with nonadherence and/or suboptimal therapy; two other groups demonstrated metabolite clusters indicative of adequate adherence (59.2%). Those patients whose metabolite profile demonstrated low levels of both metabolites had consistently lower behavioral adherence rates. Conclusions To our knowledge, this was the first study to prospectively validate a pharmacological measure of medication adherence with a behavioral adherence measure in a relatively large sample of pediatric patients with cancer. Using multiple methods of adherence measurement could inform clinical care and target patients in need of intervention.

Congenital heart disease (CHD) severity is associated with a lower quality of life (QOL). Given the lack of data, we sought to identify surgical and ICU factors associated with QOL scores. Patients from 8 centers who underwent Fontan procedure, TOF or TGA repair who participated in the Pediatric

BACKGROUND AND OBJECTIVE:A better understanding of how poverty-related hardships affect child health could highlight remediable intervention targets. Tobacco smoke exposure may be 1 such consequence of family hardship. Our objective was to explore the relationship between family hardships and tobacco exposure, as measured by serum cotinine, a tobacco metabolite, among children hospitalized for asthma.METHODS:We prospectively enrolled a cohort of 774 children, aged 1 to 16 years, admitted for asthma or bronchodilator-responsive wheezing. The primary outcome was detectable serum cotinine. We assessed family hardships, including 11 financial and social variables, through a survey of the child’s caregiver. We used logistic regression to evaluate associations between family hardship and detectable cotinine.RESULTS:We had complete study data for 675 children; 57% were African American, and 74% were enrolled in Medicaid. In total, 56% of children had detectable cotinine. More than 80% of families reported ≥1 hardship, and 41% reported ≥4 hardships. Greater numbers of hardships were associated with greater odds of having detectable cotinine. Compared with children in families with no hardships, those in families with ≥4 hardships had 3.7-fold (95% confidence interval, 2.0–7.0) greater odds of having detectable serum cotinine in adjusted analyses. Lower parental income and educational attainment were also independently associated with detectable serum cotinine.CONCLUSIONS:Family hardships are prevalent and associated with detectable serum cotinine level among children with asthma. Family hardships and tobacco smoke exposure may be possible targets for interventions to reduce health disparities.

Objective Low socioeconomic status (SES) is associated with a range of health outcomes. Our objective was to study the relationship between residence in a neighborhood of severe socioeconomic disadvantage and childhood obstructive sleep apnea (OSA). Study design Cross-sectional analysis of 843 (49% female, 36% African-American) children 8 to 11 years of age from a community-based cohort. Data on neighborhood conditions were obtained from the 2000 US Census. The main outcome measure was OSA, defined as an obstructive apnea hypopnea index >5 events per hour or an obstructive apnea index >1 event per hour. Results Residence in a neighborhood of severe socioeconomic disadvantage was significantly associated with OSA after adjusting for effects of previously established risk factors: premature birth, obesity, and African-American ethnicity (OR = 3.44, 95% CI = 1.53-7.75). Secondary analyses showed that neighborhood disadvantage remained significantly associated with OSA: (1) in the African-American subgroup, after controlling for effects of prematurity and obesity; and (2) after controlling for indicators of household-level SES or other health characteristics. Conclusions Childhood OSA is associated with low SES as measured by an index describing severe neighborhood disadvantage, emphasizing the potential importance of environmental factors, particularly those associated with neighborhood distress, as risk factors for OSA.

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.

Purpose To examine stability versus change in parental understanding of random assignment in randomized clinical trials (RCTs) for pediatric leukemia and to identify factors associated with changes in understanding. Methods Eighty-four parents of children diagnosed with acute lymphoblastic leukemia or acute myeloid leukemia who were enrolled onto a pediatric leukemia RCT at one of six US children's hospitals participated. Parents were interviewed twice, once within 48 hours after the Informed Consent Conference (ICC; time 1 [T1]) and again 6 months later (time 2 [T2]). Interviews focused on parental understanding of key components of the RCT, including random assignment. Interviews were audiotaped, transcribed, and later analyzed. Results Changes in understanding of random assignment occurred in 19% of parents, with 17% of parents deteriorating in understanding from T1 to T2. Forty-nine percent of parents failed to understand random assignment at both times. Factors associated with understanding at both times included majority ethnicity, high socioeconomic status, parental reading of consent document, and presence of a nurse during the ICC. Physician discussion of specific components of the RCT was also associated with understanding at both times. Female caregivers and parents of low socioeconomic status were overrepresented among those who showed decay in understanding from T1 to T2. Conclusion Parents showed little gain in understanding over time. Factors that predicted understanding at diagnosis as well as sustained understanding over time may be important intervention targets. Attention to both modifiable and nonmodifiable barriers is important for clinical practice.

This study examined patterns of agreement versus disagreement in family perceptions of caregiver and youth involvement in asthma management tasks and associations of these patterns with youth asthma outcomes. Fifty-six caregiver-child dyads completed questionnaires of family involvement in asthma management and asthma health outcomes (i.e., symptom days, health care utilization, and medication adherence). Discrepancies were documented for perceptions of both caregiver and youth involvement. Caregiver overestimation of youth involvement in asthma management was associated with greater asthma severity and more asthma symptoms. Discrepancies in family perceptions of involvement pose salient challenges for effective clinical management and require clinical attention.

Objective To examine the longitudinal relationship between depressive symptoms at study entry (T1) on pain intensity (PI) and functional disability over a 1-year period among children with either sickle cell disease (SCD) or juvenile idiopathic arthritis (JIA). Methods 119 children, ages 8-17 years, completed measures of depression at T1 as well as pain and functional disability at T1, 6-month (T2), and 12-month (T3) follow-ups. Caregivers also rated their child's pain and disability at each time point. General linear mixed modeling was employed to examine longitudinal relationships between study variables. Results For children with JIA, T1 pain significantly moderated the effects of T1-depressive symptoms on T2 and T3 pain where T1-depressive symptoms predicted future child-reported pain only when T1 pain was relatively mild. Similarly, T1-depressive symptoms predicted future child-reported disability only when initial reports of disability were relatively low. Only family income significantly predicted T2 and T3 pain in children with SCD. Conclusions Study findings suggest that T1-depressive symptoms play a role in the longitudinal course of pain symptoms in children with JIA but not in children with SCD.

Objective To examine long-term attention problems and their cognitive correlates after childhood traumatic brain injury (TBI). Method Data were drawn from a prospective, longitudinal study conducted between 1992 and 2002. Participants included 41 children with severe TBI, 41 with moderate TBI, and 50 with orthopedic injury (OI), who were all between 6 and 12 years of age at the time of injury. Parent ratings of attention problems were obtained at a long-term follow-up on average 4 years post-injury and compared with ratings of premorbid attention problems obtained shortly after injury. At the long-term follow-up, children also completed several cognitive tests of attention and executive functions. Results Hierarchical linear and logistic regression analyses indicated that the severe TBI group displayed significantly more attention problems than the OI group at 4 years post-injury, both behaviorally and cognitively, after controlling for race, socioeconomic status, and premorbid attention problems. At long-term follow-up, 46% of the severe TBI group displayed significant attention problems on the Child Behavior Checklist, as opposed to 26% of the OI group (odds ratio = 3.38; 95% confidence interval, 1.15-9.94). On the Attention-Deficit/Hyperactivity Disorder Rating Scale, 20% of the severe TBI group displayed clinically significant attention problems compared with 4% in the OI group (odds ratio = 9.59; 95% confidence interval, 1.24-73.99). However, group differences in behavioral symptoms were significantly larger for children with more premorbid symptoms than for children with fewer premorbid problems. Measures of executive functions were significantly related to behavioral attention problems, after controlling for group membership, race, and socioeconomic status. Conclusions Childhood TBI exacerbates premorbid attention problems. Long-term behavioral symptoms of attention problems are related to the cognitive deficits in attention and executive functions that often occur in association with childhood TBI.

Background Many symptoms of primary immunodeficiency (PI) disease can be successfully managed with intravenous immunoglobulin infusion. Although survival rates and prognosis have greatly improved, children with PI disease are still at risk for physical, social, and psychological problems owing to their chronic health condition. However, to our knowledge, there are no empirical data concerning health-related quality of life (HRQOL) in children with PI disease receiving intravenous immunoglobulin infusion. Objective To compare parental reports of HRQOL of children with PI disease receiving intravenous immunoglobulin infusion with children with juvenile idiopathic arthritis (JIA) and a healthy sample. Methods Demographic, illness, and HRQOL data were collected from parents of 4- to 18-year-old children with PI disease (n = 36), children with JIA (n = 36), and healthy children (n = 36). The HRQOL was evaluated using the Child Health Questionnaire–Parent Report version. Results Compared with children with JIA, children with PI disease were similar in many aspects of their HRQOL. However, parents of children with PI disease reported greater limitations in their personal time, poorer general health of their children, greater limitations in their children's physical functioning and family activities, and less bodily pain than children with JIA. In contrast, children with PI disease scored lower on most HRQOL domains compared with healthy children. Conclusion Children with PI disease experience similar HRQOL to children with JIA and poorer HRQOL than healthy children, indicating potential areas to be addressed by future medical and psychosocial interventions.

The objective of this study was to examine the degree to which educators face problems associated with chronic illness in their pupils, the extent to which they feel responsible for addressing such problems, and the amount of training to deal with these problems. One hundred schools randomly selected from 10 counties in a midwest state stratified on substance abuse deaths, mental health costs, and socioeconomic status (percentage of free lunches) were approached, and 17 agreed to participate. Of the 1,184 eligible educators, 480 provided complete surveys (response rate = 40%). Nearly every respondent (98.7%) reported knowing a student in the school with a chronic illness, and 43% felt moderately to very responsible for dealing with issues of chronic illness, yet 59% reported no academic training and 64% reported no on-the-job training for dealing with issues of chronic illness. Schoolteachers are ill-prepared to deal with issues of chronic illness in the schools. Practice implications are discussed.

The relation of outcome expectancy and perceived self-efficacy for asthma prevention and management in adolescents to asthma self-management, adherence to treatment, and asthma morbidity was studied. Participants included 77 adolescents, 11 to 17 years old, and their caregivers. A high outcome expectancy was associated with greater asthma morbidity but was unrelated to self-management or treatment adherence. Self-efficacy was associated with adherence to treatment but was unrelated to self-management and asthma morbidity. The social cognitive theory and health belief models may not be generalizable to adolescents with asthma because psychological factors (e.g., internal beliefs and expectations) may still be developing in adolescence.

Objectives To operationalize a comprehensive description of attrition, including pre-inclusion, dropout, and attrition due to intermittent missing data, and to test a predictive model of attrition using a data set from a randomized controlled intervention in pediatric asthma. Methods Participants included children, ages 4-12, diagnosed with asthma and their caregivers. Demographic variables and outcome measures of asthma morbidity were examined in 327 families to determine their association with attrition. Results Families who did not complete randomization and the intervention tended to have younger caregivers than did completers. Caregiver age emerged as the most consistent predictor of pre-inclusion and dropout attrition. There were no significant predictors of attrition due to intermittent missing data. Conclusion Younger caregivers may be at particular risk for attrition in pediatric asthma intervention studies and warrant special attention by investigators.

Objectives: To track educational interventions received by children with traumatic brain injury (TBI),examine factors associated with placement in special education, and explore the concordance ofplacement with children’s needs. Methods: Interventions were monitored in 42 children with severe TBI,42 with moderate TBI, and 50 with orthopedic injuries only (ORTHO group). A baseline assessment wascompleted soon after injury. Follow-up assessments were conducted 6 and 12 months after the baselineand at an extended follow-up about 4 years postinjury.Results: Rates of special education were higherin the severe TBI group than in the ORTHO. Predictors of special education included TBI severity,socioeconomic status, and measures of pre- and postinjury child status. Several children with TBI withresidual deficits who were in regular education prior to injury did not receive special education at theextended follow-up.Conclusion: Although special education is frequently provided for several yearsafter severe TBI, existing programs are of limited scope.

Large numbers of infants and young children are affected by behavioral and emotional problems that pose salient challenges for clinical assessment and management. In meeting such challenges, one of the most important needs for the field is to develop empirical data that support the efficacy and effectiveness of methods of assessment and intervention that are tailored to those behavioral and emotional problems experienced by infants and young children. Contributions to this special issue address this need with respect to attachment problems and disorders, autism and pervasive developmental disorders, self-injurious behavior, feeding problems, and disruptive behavior.

Health-related quality of life (HRQOL) of youths with sickle cell disease (SCD) has not been described, despite the psychosocial and physical consequences associated with the disease. We compared the HRQOL of 58 children with SCD to a demographically similar sample of 120 healthy children and examined predictors of HRQOL. Child HRQOL was assessed using the Child Health Questionnaire--Parent Report Form. Review of medical charts of children with SCD provided data on disease-related complications. Results demonstrated that caregivers of children with SCD reported that their children had more limited physical, psychological, and social well-being than healthy children. Older child age, female gender, and more disease-related complications predicted limitations in the physical health of children with SCD. The findings indicated that SCD significantly affects the HRQOL of youths. Certain subgroups of patients (e.g., children with more disease complications) may benefit from interventions specifically designed to improve their physical functioning.

The purpose of the study was to develop and evaluate a psychometrically sound health belief measure, the Beliefs About Medication Scale (BAMS) that can be used with adolescent chronic illness populations whose prescribed treatment includes oral medication. One hundred and thirty-three adolescents (age 11–18 years) with asthma (n = 60), HIV (n = 31), or inflammatory bowel disease (n = 42) completed the BAMS and, along with their parent, a self-report medication interview. A confirmatory factor analysis supported the hypothesized subscales of Perceived Threat, Positive Outcome Expectancy, Negative Outcome Expectancy, and Intent to Adhere to treatment. The subscales evidenced good internal consistency and 3-week test-retest reliability. Univariate and multivariate analyses demonstrated that the health belief constructs accounted for 22% of the variance in medication adherence beyond demographic and illness characteristics. The study provides preliminary evidence of the reliability and validity of a theoretically based measure of health beliefs for adolescents. The BAMS may be a useful tool to evaluate the psychological barriers to adherence that place teenagers at risk for nonadherence.

Contents: Preface. Part I: Historical Evolution and Conceptual Foundations of Pediatric Health-Related Quality of Life Assessment. R. Levi, D. Drotar, Critical Issues and Needs in Health-Related Quality of Life Assessment of Children and Adolescents With Chronic Health Conditions. E.L. Schor, Children's Health and the Assessment of Health-Related Quality of Life. J.W. Finkelstein, Methods, Models, and Measures of Health-Related Quality of Life for Children and Adolescents. J.D. Lantos, Some Moral and Political Pitfalls in Measuring Quality of Life. Part II: Population-Based Applications of Measures of Health-Related Quality of Life With Children and Adolescents. R.M. Kaplan, Implications of Quality of Life Assessment in Public Policy for Adolescent Health. B. Starfield, A. Riley, Profiling Health and Illness in Children and Adolescents. J.M. Landgraf, L. Abetz, Influences of Sociodemographic Characteristics on Parental Reports of Children's Physical and Psychosocial Well-Being: Early Experiences With the Child Health Questionnaire. Part III: Methods, Measures, and Applications of Health-Related Quality of Life Assessment in Children and Adolescents With Specific Chronic and Health Conditions. A.M. Jacobson, K. Fried, Conceptual Issues in Developing Quality of Life Assessments for Children: Illustrations From Studies of Insulin-Dependent Diabetes Mellitus. S. Saigal, P. Rosenbaum, L. Hoult, W. Furlong, D. Feeny, E. Burrows, B. Stoskopf, Conceptual and Methodological Issues in Assessing Health-Related Quality of Life in Children and Adolescents: Illustration From Studies of Extremely Low Birthweight Survivors. D. Feeny, E.F. Juniper, P.J. Ferrie, L.E. Griffith, G.H. Guyatt, Why Not Just Ask the Kids? Health-Related Quality of Life in Children With Asthma. S.R. Boggs, P. Durning, The Pediatric Oncology Quality of Life Scale: Development and Validation of a Disease-Specific Quality of Life Measure. D.I. Czyzewski, L.K. Bartholomew, Quality of Life Outcomes in Children and Adolescents With Cystic Fibrosis. S.L. Gortmaker, W.R. Lenderking, C. Clark, S. Lee, M.G. Fowler, J.M. Oleske, the ACTG 219 Team, Development and Use of a Pediatric Quality of Life Questionnaire in AIDS Clinical Trials: Reliability and Validity of the General Health Assessment for Children. L.S. Walker, C.A. Heflinger, Quality of Life Predictors of Outcome in Pediatric Abdominal Pain Patients: Findings at Initial Assessment and 5-Year Follow-Up. Part IV: Methods, Measures, and Applications of HRQOL Assessment in Children With Growth and Endocrine Problems. I. Wiklund, A. Erling, K. Albertsson-Wikland, Critical Review of Measurement Issues in Quality of Life Assessment for Children With Growth Problems. B. Stabler, N.C. Frank, Quality of Life and the Psychiatric Status of Individuals Treated With GH in Childhood. D.E. Sandberg, P. Michael, Psychosocial Stresses Related to Short Stature: Does Their Presence Imply Psychological Dysfunction? D.H. Skuse, S. Cave, A. O'Herlihy, R. South, Quality of Life in Children With Turner Syndrome: Parent, Teacher, and Individual Perspectives. Part V: Summary of Recommendations for Clinical Research Applications of Assessments of Pediatric Health-Related Quality of Life. D. Drotar, R. Levi, T.M. Palermo, K.A. Riekert, J.R. Robinson, N. Walders, Clinical Applications of Health-Related Quality of Life Assessment for Children and Adolescents. D. Drotar, R. Levi, T.M. Palermo, K.A. Riekert, J.R. Robinson, N. Walders, Recommendations for Research Concerning the Measurement of Pediatric Health-Related Quality of Life.

Objective To examine changes in parent–child communication patterns and their relation to glycemic control and treatment adherence using observational data in a 3-year prospective multisite study of youth with type 1 diabetes aged 9–11 years at baseline and their families (n = 217). Methods Adolescents and caregivers participated in a diabetes problem-solving discussion. Families were rated on negative and positive communication and interactions using the Interaction Behavior Code. Results Maternal and paternal negative communication decreased over time, whereas adolescent and maternal positive communication and positive reciprocity increased. Baseline preadolescent youth and maternal positive communication predicted adherence 3 years later. Changes in family communication did not predict changes in glycemic control or adherence. Conclusions During the transition to adolescence, family communication changed in unexpected and positive ways. Additionally, the relationship of baseline family communication to subsequent adherence suggests the need to assess family communication concerning diabetes-related management during preadolescence.

Child behavior problems, injury-related family burden, and parent psychological distress were assessed longitudinally over the first year post injury in 40 children with severe traumatic brain injury (TBI), 52 with moderate TBI, and 55 with orthopedic injuries not involving brain insult. Parents rated children's preinjury behavior soon after injury. Postinjury child behavior and family outcomes were assessed at 6- and 12-month follow-ups. Findings from path analysis revealed both direct and indirect effects of TBI on child behavior and family outcomes, as well as cross-lagged child-family associations. Higher parent distress at 6 months predicted more child behavior problems at 12 months, controlling for earlier behavior problems; and more behavior problems at 6 months predicted poorer family outcomes at 12 months, controlling for earlier family outcomes. Support for bidirectional influences is tentative given that limited sample size precluded use of structural equation modeling. The findings nevertheless provide impetus for considering the influences of person-environment interactions on outcomes of TBI. (JINS, 2001, 7, 755–767.)

A situational analysis of problematic situations was conducted for 37 caregivers of children with sickle cell disease (SCD) who ranged in age from 5 to 13 years. Participants responded to a semistructured interview related to caring for a child with SCD. The interview included the domains of medication adherence, nutrition, minimizing and coping with pain episodes, social problems, academic difficulties, and children's expression of negative feelings related to having SCD. Caregivers described a total of 356 problems. Almost all caregivers reported experiencing problems with their children's nutrition (n = 35), minimizing pain episodes (n = 34), and their children expressing feelings about having SCD (n = 33). Moderately challenging and emotionally upsetting problems were reported for coping with pain episodes. The total number of problems was significantly higher for boys than for girls. Nutrition issues were more frequently reported for younger children. Findings have salient clinical implications for the care of children with SCD.

This study was designed to examine the relationship of maternal and child human immunodeficiency virus (HIV) infection to the security of attachment of Ugandan infants. The attachment patterns of two groups of Ugandan mother-infant pairs: 35 HIV-positive mothers and their infants and 25 HIV-negative mothers and their infants were compared. We tested the hypothesis that infants of HIV-positive mothers would demonstrate less secure attachment as measured by the Waters Attachment Q-set than infants of HIV-negative mothers. No differences were found in the security of attachment of infants of HIV-positive versus HIV-negative mothers. Infants of HIV-positive mothers with Acquired Immunodeficiency Syndrome (AIDS) were less securely attached than infants of mothers without AIDS. These findings underscore the relationship of infant security of attachment to maternal HIV infection in the presence of AIDS-related symptoms but not to asymptomatic maternal HIV infection.

The allocation of responsibilities for asthma management within African-American families was examined in 60 adolescents and their primary caretakers. Separate structured interviews were conducted with adolescents and primary caretakers, and perceptions of family management, adherence to asthma treatment regimen, and functional morbidity were assessed. Support for the primary hypothesis that higher levels of nonadherence and functional morbidity would be observed in families where caretakers overestimated the level of adolescent involvement in asthma self-care was found. Implications for family-based asthma management in ethnic minority adolescents are discussed.

Adherence to medical treatment is a significant problem for children and adolescents with chronic conditions, such as asthma, diabetes, and cystic fibrosis. The consequences of nonadherence can be serious, contributing to increased symptoms, unnecessary hospitalizations, and declines in physical functioning. The quality of data obtained from clinical trials can also be affected by poor adherence, leading to erroneous conclusions concerning the efficacy of drug treatments and the dosages that are needed to achieve those effects. Adherence problems in both clinical research and practice also lead to substantially higher health care costs. In order to further our understanding of the barriers that lead to poor adherence and identify strategies that are effective in addressing them, we need to develop reliable and valid measures of adherence behaviors. Using cystic fibrosis as a model of a serious, chronic disease that requires a difficult and time-consuming medical regimen, three different types of adherence measures are considered: self-report questionnaires, daily diary reports, and electronic monitors. The specific advantages and disadvantages of each type of measurement are reviewed, and specific recommendations are made for future research.