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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.

Web-based tools to improve clinic attendance have been effectively used in pediatric conditions but have not been tested in pediatric sickle cell disease (SCD). The goal of this pilot study was to assess barriers to clinic attendance and the feasibility of a web-based assessment tool to promote problem solving around clinic appointments. Study participants included 30 youths with SCD (M=11.7±3.5 y; 57% male participants; 60% HbSS; 20% HbSC; 17% HB+Thal) and their primary caregivers. Medical chart review indicated that 61% of participants attended at least 2 SCD clinic appointments in the past year. The primary barrier to clinic attendance was inability to take off from work/school (33%). Regarding feasibility and acceptability, the computerized program was well received by patients and caregivers, with youth and caregivers reporting a high degree of usefulness and preference for computerized assessment. Results suggest that this innovative approach holds promise and should be tested on a larger sample of youth with SCD.

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.

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 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.

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.

To examine parent protection and its correlates among 8-year-old ELBW children compared with normal birth weight (NBW) controls.The population included 217 eight-year-old ELBW children born 1992-1995 (92% of the surviving birth cohort; mean birth weight, 811 g; mean gestational age, 26.4 weeks) and 176 NBW controls. The primary outcome measure, the Parent Protection Scale (PPS), included a total score and four domains including Supervision, Separation, Dependence, and Control. Multivariate analyses were performed to examine the predictors of parental protection and overprotection.After adjusting for socioeconomic status (SES), race, sex, and age of the child, parents of ELBW children reported significantly higher mean total Parent Protection Scale scores (31.1 vs 29.7, p = .03) than parents of NBW children and higher scores on the subscale of Parent Control (8.0 vs 7.5, p = .04). These differences were not significant when the 36 children with neurosensory impairments were excluded. Parents of ELBW children also reported higher rates of overprotection than controls (10% vs 2%, p = .001), findings that remained significant even after excluding children with neurosensory impairments (8% vs 2%, p = .011). Multivariate analyses revealed lower SES to be associated with higher total Parent Protection Scale scores in both the ELBW (p.001) and NBW (p.05) groups. Additional correlates included neurosensory impairment (p.05) and functional limitations (p.001) in the ELBW group and black race (p.05) and maternal depression (p.01) in the NBW group. Lower child IQ was significantly associated with higher PPS scores only in the neurosensory impaired subgroup of ELBW children.Longer term follow-up will be necessary to examine the effects of the increased parent protection on the development of autonomy and interpersonal relationships as the children enter adolescence.

This narrative review of the correlates of effective parent-provider communication and relevant interventions indicates that effective parent-provider communication is associated with parental satisfaction with care, adherence to treatment recommendations, and enhanced discussion of psychosocial concerns. Moreover, interventions designed to improve parent-provider communication resulted in more discussion of psychosocial concerns, better recall of information from the visit, and improved parent-provider communication. Recommendations for the development of more effective studies of parent-provider communication and relevant interventions in pediatric primary care include the need for theoretical models to help guide research, the development of reliable and valid self-report measures of communication, the assessment of clinically relevant correlates of parent-provider communication, and the study of children's roles in communication with their pediatricians.

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.

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.

The aim of this study was to learn about and to describe retrospective perceptions of parents of the circumstances of their child's cancer diagnosis and of the informed consent process.Professional moderators conducted three focus groups with 22 parents of children with cancer who were eligible for enrollment in a Children's Cancer Group clinical trial research protocol. Each focus group consisted of seven to nine parents and was audiotaped and transcribed.Parents' descriptions of the early phase of their child's illness yielded the following themes: dialogues regarding the diagnosis and treatment options occurred amidst tremendous stress; a sense of constraint and lack of control were common; parents experienced variable degrees of choice regarding their child's participation in a clinical trial; and parents provided suggestions about how to improve the informed consent process. Overall, parents did not verbalize distinctions between their understanding of their child's medical treatment, research participation, and other aspects of their child's cancer experience.Based on these results, the authors conclude with practical recommendations for health care professionals caring for children with cancer and call for future research about parents' understanding of treatment options, the nature of clinical trials, and experience with the diagnostic and early treatment phase of childhood cancer with larger samples of parents from multiple sites.

This investigation examined factors related to adherence to treatment regimens for children with cystic fibrosis (CF) and their mothers. Subjects were 45 children with CF who ranged in age from 6 to 10 years and their mothers. Findings revealed that children's and parents' reports of level of adherence were related to their knowledge of the specific details associated with medically prescribed treatments. In this sample, 12% to 32% of mothers did not have an accurate understanding of physician recommendations for their children's treatments. When controlling for individual differences in the prescribed treatment regimens, parents' and children's knowledge of what had been prescribed accounted for a significant portion of the variance in the children's reported treatment-related behaviors. Results are discussed in terms of implications for future intervention research aimed at enhancing adherence to treatment as well as for future directions for clinical efforts in this area.

Background: The acute psychosocial effects of orthopedic injuries on children and their families are poorly understood. Previous studies have relied on retrospective reports or failed to take into account accompanying brain injuries. The purpose of the present study was to examine prospectively the psychosocial impact of pediatric orthopedic traumatic fractures with and without accompanying brain injuries. Methods: Participants were 108 children 6 to 12 years old with orthopedic injuries requiring hospitalization: group 1 In = 80) had fractures only, group 2 In = 28) also had moderate or severe brain injuries. Using standardized measures and parent interviews, we obtained preinjury estimates of family functioning and child behavior problems and postinjury measures of parental distress, family stresses, and child behavior. Results: Parents reported significant clinical distress (35% in group 1, 57% in group 2), family burdens (group 2 > group 1), and child behavioral changes (41% in group 1, 89% in group 2). Multiple regression analyses indicated that preinjury family status and brain injuries predicted postinjury parental and family distress. Conclusion: Pediatric orthopedic injuries have greater social effects on children with accompanying brain injuries and poorer preinjury family functioning.

The Pediatric Cardiac Quality of Life Inventory (PCQLI) is a self-administered disease-specific quality of life (QOL) tool with patient and parent-proxy reporting (Child form 8 –12 yrs; Adolescent form 13–18 yrs), designed to assess the QOL of pediatric patients with congenital and acquired heart disease (CHD, AHD). Our purpose was to evaluate the reliability and validity of the PCQLI Seven centers recruited CHD and AHD patients age 8 –18 yrs. Patient-parent pairs completed the PCQLI, a generic QOL tool (PedsQL), and non-QOL questionnaires [Self Perception Profile for Children/Adolescents (SPPC/A); Youth Self Report and Child Behavioral Checklist (Achenbach)]. Test-retest reliability was evaluated by administering the PCQLI at 2 time points, and was assessed by Spearman correlation coefficient. Validity was tested by assessing: differences in PCQLI score among heart disease subgroups; associations between PCQLI score and the number of cardiac surgeries, catheterizations, hospitalizations, and doctor visits; the correlation between patient and parent PCQLI scores; and correlations between PCQLI score and the scores generated by generic QOL and non-QOL tools. The study was completed by 1486 patient-parent pairs. Heart disease subgroups included: biventricular repair (45.4%); Fontan palliation (12.6%); unrepaired CHD (12.0%); heart transplant (4.4%); and AHD (25.6%). Correlations evaluating test-retest reliability were high (r=0.78 – 0.90). Lower PCQLI score was associated with Fontan palliation (p This research has received full or partial funding support from the American Heart Association, AHA Great Rivers Affiliate (Delaware, Kentucky, Ohio, Pennsylvania & West Virginia).

Mothers (n = 26) of children and young adolescents (ages 4 to 14) with insulin-dependent diabetes mellitus (IDDM) and mothers (n = 26) of children and young adolescents with cystic fibrosis (CF) (ages 4 to 14) described family responsibilities for treatment-related tasks and their children's general independence. Contrary to prediction, children and adolescents with CF and IDDM demonstrated comparable levels of independence concerning treatment-related responsibilities and their general adaptive behavior. As hypothesized, older children assumed higher levels of independence in managing their conditions, as well as sharing of treatment-related responsibilities with their parents. However, parents, especially mothers, continued to be very involved in most tasks, even for young adolescents. Independence in assuming treatment-related responsibilities was highly related to general independence among children and adolescents with both conditions. Children's independence in chronic illness management was not related to help mothers received from others as measured by the frequency and/or number of people helping. Findings have implications for pediatricians' monitoring and support of adaptive family responsibilities for chronic illness management. J Dev Behav Pediatr 15:265–272, 1994. Index terms: cystic fibrosis, insulin-dependent diabetes mellitus, chronic illness, independence, treatment-related responsibilities.

This study describes the role of personality styles, gender, and year in training on coping styles and health-related behaviors in 191 pediatric and internal medicine house officers. More highly distressed house staff reported more physical complaints, less adequate self-health care, and mor

Family functioning of nonorganic failure-to-thrive (NOFT) infants was compared with that of physically healthy, normally growing infants of similar socioeconomic status shortly after the time of the diagnosis of this condition (average age of 5 months) and again at 4 years of age. Families of NOFT infants demonstrated less adaptive relationships than did comparison-group infants, as measured by the Family Relationships Inventory (FRI) at both time points, but a comparable number of changes in residence and constellation on follow-up. Contrary to prediction, the quality of family relationships at point of diagnosis did not predict subsequent family relationships, residence, or constellation changes in the NOFT sample. However, more adaptive family relationships in the comparison group at study entry predicted fewer residence and constellation changes and more cohesive relationships 3 years later. The impact of significant discontinuities in family functioning and status should be considered in research and in clinical interventions with NOFT children.

Using a prospective study design, 48 preschool children with early histories of nonorganic failure-to-thrive (NOFT) and 47 physically healthy children of comparable age, sex, birth order, and family demographics were compared on measures of problem solving and personality development (ego control and ego resiliency). In responding to structured measures, NOFT children demonstrated deficits in behavioral organization, ego control, and ego resiliency compared with controls. Parents also identified higher levels of behavioral symptoms in children with early histories of NOFT compared with controls. However, home observational measures of ego control and ego resiliency did not differentiate the two groups. Deficiencies in problem solving and personality development and increased levels of behavioral symptoms in preschool children with early histories of NOFT may affect their future socioemotional development and learning.

Research in developmental and behavioral pediatrics is characterized by special methodological problems involving measurement, design, and analysis related to research questions, populations, and nature of interventions in this field. To sensitize researchers and practitioners to these problems and to enhance the quality of research and critical consumption of research reports, this special issue provides a summary of basic methodological issues in developmental and behavioral pediatrics. Advances in this field will require the kind of critical observation and decision making that are shared by researchers and practitioners and are illustrated by contributions to this issue.

Studies of the psychological adjustment of physically healthy siblings to their sibling's chronic illness indicate that there is no one-to-one correspondence between the presence of a chronic illness and risk for psychological disturbance in nonafflicted children. Although the presence of a chronic illness may increase siblings' subjective distress, effects of a chronic illness on the psychological adjustment of siblings are selective and vary with age, sex, and type of illness. Chronic illness is a stressor which, in interaction with other variables, may contribute to increased risk of psychological disturbance for some siblings. Although the variables which mediate the effects of a chronic illness on siblings are as yet poorly understood, the quality of family functioning and relationships has both direct and indirect effects on siblings and deserves primary consideration in the comprehensive care of chronically ill children. Future research might profitably focus on individual differences in sibling adaptation, especially on factors which contribute to positive adjustment, the role of the family context as a mediating influence, and evaluation of preventive interventions designed to enhance sibling adaptation.

Young adults with cystic fibrosis (CF) (n = 73) were found to have age-adequate psychological functioning. Psychological adjustment, as measured by the Psychological Screening Inventory (PSI) and the Tennessee Self-Concept Inventory (TSCI), correlated with coping style as measured by the Rep

Studies of behavioral diagnosis in children with nonorganic failure-to-thrive (NOFTT) are critically reviewed. Prior studies have been based on several problematic assumptions: (1) specific behavioral abnormalities are associated with NOFTT, (2) NOFTT is a homogeneous population, and (3) a strict dichotomy between organic and environmental influences on physical growth is a valid distinction. An alternative way to organize data from behavioral assessment is presented which emphasizes the heterogeneity of NOFTT and the consequences of environmental and biologic risk factors on psychological development. A comprehensive approach to behavioral assessment can facilitate the clinical management of NOFTT and encourage research concerning the developmental processes which affect the psychological outcomes of NOFTT children.