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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.

Background It can be difficult to explain pediatric Phase I oncology trials to families of children with refractory cancer. Parents may misunderstand the information presented to them, and physicians may assume that certain topics are covered in the informed consent document and need not be discussed. Communication models can help to ensure effective discussions.

Objective To provide a historical analysis of professional growth and the legacy of early challenges to the development of the field of pediatric psychology. Method More than 40 years of professional experience and consideration of published work provided the basis for this article. Results Challenges to the future of pediatric psychology that date back to the origins of the field include foundational challenges involving medical authority and administrative control as well as models of medical practice in pediatric hospital settings. These influences limited opportunities for program leadership and independent funding of clinical services, constrained interorganizational organization, and led to an underemphasis of prevention and primary care in clinical practice, research, and training. Conclusion Transformative future growth in pediatric psychology will necessitate innovative strategies that address continuing professional challenges with roots in the field’s early history. This article presents a historical analysis of the origins and continuing impact of salient challenges on the professional growth of the field of pediatric psychology. In the formative years of the field (1970–1980), pediatric psychologists faced the challenges of gaining access to clinical care and research populations and developing a professional identity. They also needed to manage contextual constraints such as medical authority and administrative control and prevailing models of medical practice. The continuing impact of these early constraints on clinical practice, program development, and leadership is described. This historical analysis suggests future directions to transform the future of pediatric psychology through promotion of unifying activities, interprofessional organizational collaboration, enhancing the economic viability of clinical practice, expanding the scope of prevention and public health agendas, enhancing capacity and competency in primary care clinical services and research, promoting innovation and leadership, and developing systematic data on programs, work force trends, and funding models.

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.

BACKGROUND Informed consent for a pediatric oncology phase 1 trial is a delicate process, and is made more complex by the difficulty of the information and the requirement for parental consent, and patient assent when applicable. This analysis identifies suggestions for improving the informed consent process received from parents and adolescent and young adult patients (aged 14 years-21 years) who had the option of participating in a phase 1 pediatric oncology trial. METHODS A total of 57 parents and 20 patients completed interviews as part of a multisite, prospective, descriptive study. These transcribed interviews were studied using established content analysis methods. RESULTS Parent and patient responses contained 220 suggestions and 54 suggestions, respectively. A total of 21 unique suggestions for improvement emerged in 3 main themes: 1) provision of more information; 2) structure and presentation of the informed consent process, and 3) suggestions for physicians conducting the process. Common suggestions included providing more specific information about the trial, allowing more time for decision-making, and using different methods to deliver information. CONCLUSIONS Participants involved in the informed consent process for a phase 1 trial provided specific recommendations to research teams to enhance the process. Physician/investigators should be informed of these recommendations and develop and test interventions incorporating them. Cancer 2013;119:4154–4161. © 2013 American Cancer Society.

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.

Objective To evaluate the effectiveness of an adherence promotion intervention provided to patients and families referred to a clinical service. Methods 6 patients and their caregivers representing 5 different chronic conditions were seen for comprehensive psychological intervention that was evaluated based on electronic monitoring of adherence to prescribed oral medication. Results Time series analysis (Auto-Regressive Integrated Moving Average) indicated that for each of the 6 cases, treatment adherence increased during the intervention phase relative to nonintervention periods, but for 5 of these 6 patients, adherence decreased during the follow-up period (p

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.

Objective To investigate the presence and severity of real-world impairments in executive functioning—responsible for children's regulatory skills (metacognition, behavioral regulation)—and its potential impact on school performance among pediatric survivors of complex congenital heart disease (CHD). Study design Survivors of complex CHD aged 8-16 years (n = 143) and their parents/guardians from a regional CHD survivor registry participated (81% participation rate). Parents completed proxy measures of executive functioning, school competency, and school-related quality of life (QOL). Patients also completed a measure of school QOL and underwent IQ testing. Patients were categorized into 2 groups based on heart lesion complexity: 2-ventricle or single-ventricle. Results Survivors of complex CHD performed significantly worse than norms for executive functioning, IQ, school competency, and school QOL. Metacognition was more severely affected than behavioral regulation, and metacognitive deficits were more often present in older children. Even after taking into account demographic factors, disease severity, and IQ, metacognition uniquely and strongly predicted poorer school performance. In exploratory analyses, patients with single-ventricle lesions were rated as having lower school competency and school QOL, and patients with 2-ventricle lesions were rated as having poorer behavioral regulation. Conclusions Survivors of complex CHD experience greater executive functioning difficulties than healthy peers, with metacognition particularly impacted and particularly relevant for day-to-day school performance. Especially in older children, clinicians should watch for metacognitive deficits, such as problems with organization, planning, self-monitoring, and follow-through on tasks.

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.

(JPP) was developed to provide a venue for practitioners from a range of settings to describe their collective experiences in application of and reimbursement for the H&B codes, to share strategies that have enhanced reimbursement, and consider approaches to advocate for policies to enhance effective use of the H&B codes. This introduction summarizes highlights from commentaries from a broad range of clinical programs that represent a cross-section of pediatric psychology services from various regions of the country, identifies implications, and clarifies next steps in future agenda for practice, advocacy, and research.

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.

The most personally and professionally gratifying of my activities in the field of pediatric psychology has involved training of undergraduate, graduate, and postdoctoral fellows (Drotar, 2003). I continue to be impressed by the intellectual curiosity, values, and compassion, and raw talent that are demonstrated by the remarkable cadre of graduate and fellowship level trainees who are attracted to pediatric psychology. The future of our field will be theirs. To ensure their and our future, we need to be the best possible stewards of the extraordinary promise of these careers in the making by creating the most optimal training opportunities, experiences, and career paths for our future practitioners, teachers, and researchers. This special issue on training in pediatric psychology was conceived to address this continuing need. Training in pediatric psychology has evolved in important ways since the founding of our field (LaGreca, Stone, Drotar, & Maddux, 1988; Roberts et al., 1998; Spirito et al., 2003). The Society of Pediatric Psychology Task Force Report (2003): Recommendations for the Training of Pediatric Psychologists considered issues related to breadth and depth of training, scope of practice, training paths, primary care, interdisciplinary training, and mentors (Spirito et al., 2003). Topic areas identified as most important for obtaining knowledge and expertise in pediatric psychology included life span development, developmental psychology and developmental psychopathology, child, adolescent, and family assessment, intervention strategies, research methods and systems, evaluation, professional ethical and legal issues, diversity, roles of multiple disciplines in service delivery, prevention, family support, and health promotion, social issues affecting children, adolescents, and families, consultant and liaison roles, and disease process and medical management. This report was an important milestone in the development of training in our field as it expanded on the prior survey results and recommendations for pediatric psychology (LaGreca et al., 1988) and clinical child psychology. Since the Task Force report (Spirito et al., 2003), training programs that focus on pediatric psychology or offer pediatric training as part of another program at graduate, internship, and postdoctoral levels have expanded significantly. However, training programs in pediatric psychology face a number of significant challenges: Recruiting graduate students and facilitating development of their core competencies in both specialized training and an increasing breadth of content areas, training students to meet the challenges of research careers, and promoting the development of mentors in our field. The manuscripts in this special section respond to these challenges of pediatric psychology training.

The Division of Lung Diseases of the National Heart, Lung, and Blood Institute (NHLBI) held a workshop to develop recommendations on topics, methodologies, and resources for comparative effectiveness research (CER) that will guide clinical decision making about available treatment options for lung diseases and sleep disorders. A multidisciplinary group of experts with experience in efficacy, effectiveness, implementation, and economic research identified (a) what types of studies the domain of CER in lung diseases and sleep disorders should include, (b) the criteria and process for setting priorities, and (c) current resources for and barriers to CER in lung diseases. Key recommendations were to (1) increase efforts to engage stakeholders in developing CER questions and study designs; (2) invest in further development of databases and other infrastructure, including efficient methods for data sharing; (3) make full use of a broad range of study designs; (4) increase the appropriate use of observational designs and the support of methodologic research; (5) ensure that committees that review CER grant applications include persons with appropriate perspective and expertise; and (6) further develop the workforce for CER by supporting training opportunities that focus on the methodologic and practical skills needed.

The importance of research on ethics in the field of pediatric psychology is multifaceted: research on a wide range of pediatric studies raises continuing ethical concerns related to informed consent, including parental permission and assent (Appelbaum, Lidz, & Grisso, 2004; Brody, Scherer, Annett, & Pearson-Bish, 2003; Drotar, 2008; Masty & Fisher, 2008; Miller, Drotar, & Kodish, 2004; Miller & Nelson, 2006; Vitiello, 2008). Moreover, genetic and genetic testing research (Patenaude, 2005), prevention and intervention research with high-risk pediatric populations (Bauman, Sclafane, LoIancono, Wilson, & Macklin, 2008), and comparative effectiveness research that compares two active treatments (Stines & Feeney, 2008; Tunis, Benner, & McClellan, 2009) raise challenging new ethical issues. Research on the ethical conduct of psychological research with children and adolescents is needed for several important reasons: ethical principles such as respect for persons require investigators to facilitate informed consent (parental permission and assent) and appreciate factors that promote parents’ and childrens’ understanding of risks and benefits and informed, engaged research participation. The ethical principle of justice encourages investigators to develop methods to enhance research participation of minority and/or economically disadvantaged research participants who are underrepresented in research in pediatric psychology. To the extent that investigators implement research that facilitates diverse research participants’ informed engagement in research, this will enhance the quality of internal validity as well as the generalizability of data that are obtained. Research on pediatric ethics will also illuminate important areas such as family communication and decision making, which are highly relevant to the management of pediatric chronic illness. Data from studies of ethics in pediatric psychology will also facilitate the training of researchers to enhance the quality of their interactions with research participants and improve the ethical conduct and methodological quality of their research. Finally, data from research on ethics in pediatric psychology can inform the decisions of institutional review boards (IRBs) concerning critical areas of research ethics such as parent and child experiences in research participation, perceptions of risk and benefits, and quality of consent. The extraordinary variation in pediatric IRB practice across settings, which is well documented (Kimberly, Hoehn, Feudtner, Nelson, & Schreiner, 2006), may be highly influenced by local practices, including experience with the types of research conducted in specific settings, and IRB membership composition. Valid and compelling data on important ethical issues provide generalizable scientific knowledge that can inform IRB practice and policy in specific areas of pediatric psychology research. What are the types and functions of research on pediatric ethics? Kon’s (2009) conceptualization of different levels of research on bioethics provides a useful framework. The first category, descriptive or ‘‘lay of the land’’ research, defines current practices, opinions, beliefs, or decision making in a specific area of research or clinical care (Kon, 2009). Research on practices of payment to pediatric research participants (Weise, Smith, Maschake, & Copeland, 2002). In this volume, Birnie, Noll, Chambers, von Baeyer, and Fernandez’s description of researchers’ practices with the cold pressor test is an excellent example of this type of research. A second category, ‘‘ideal’’ versus ‘‘reality’’ research starts with an

As I reflect on my years of editorship of the Journal of Pediatric Psychology (JPP) and our work together, I’m very proud of our collaboration and collective accomplishments as an editorial team. For the most part, I believe we have delivered prompt, high-quality reviews that have improved the quality of the published research in JPP. Many authors have commented on the quality and helpfulness of the reviews they have received from JPP. That said, all reviews and editorial decisions are done by human beings. Hence, they remain imperfect. For this reason, in the spirit of continuous quality improvement, I believe it is important for us to work together to improve our review process. Previous editorials focused on improving content of reviews (Drotar, 2009) as well as the efficiency of reviews and reducing their burden on authors (Drotar, 2011). Some areas continue to require our attention and are the focus of this editorial. For example, some authors and associate editors remain concerned about the length and unnecessary detail of reviews. In addition, the quality of the dialogue that occurs among authors, reviewers, and editors in the context of manuscript review can be enhanced. The importance of developing and sustaining an effective dialogue among authors, reviewers, and managing editors is based on the following assumption: respectful dialogue and consideration of discrepant opinions in scientific review will improve the review process, better serve one of our most important consumer groups (i.e., authors), and ultimately enhance the quality of published science. On the other hand, to the extent that dialogue among authors, reviewers, and editors is confusing and/ or strained, the quality of the editorial process and published science can suffer. The purpose of this editorial is to stimulate authors, reviewers, and editors to consider ways to create a more effective collective dialogue in manuscript review.

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

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.

Various scientists have underscored the critical need for replication of research findings in the development of science, including behavioral science (Cohen, 1994; Hedges, 1987; Robinson & Levin, 1997; Shaver & Norton, 1980). However, replication of research in behavioral science in general and pediatric psychology in particular has been limited (Kline, 2004, 2009). My review of articles in the Journal of Pediatric Psychology (JPP) for the past several years indicate that replications of research findings in our field are rare. There are several reasons for this: The editorial process for scholarly journals places a high premium on new and innovative research findings rather than replications. Grant review criteria used by the National Institutes of Health (NIH) that emphasize innovative research may also inhibit research replications. Although the reasons are understandable, the relative absence of replication limits the cumulative impact, generalizability, and ultimately the validity of science (Cohen, 1994; Robinson & Levin, 1997). To address the need for more frequent research replications in the field of pediatric psychology, the purpose of this editorial is to describe the importance of research replication, types and exemplars of study replication, issue a call for replication research, and provide guidance for authors in submitting replications to JPP.

Dennis Drotar, Peggy Crawford, Margaret BonnerCincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, USAAbstract: Collaborative or shared decision-making between health care providers and families can facilitate treatment adherence, health outcomes, and satisfaction with care in the management of pediatric chronic illness, but raises special challenges. Barriers such as authoritarian models of medical care as well as absence of time and opportunity for dialogue limit collaborative decision making and can disrupt treatment adherence. However, models of provider-family communication that emphasize communication and shared goal-setting inform an anticipatory guidance model of collaborative decision-making that can enhance treatment adherence. Salient challenges and strategies involved in implementing collaborative decision-making in pediatric chronic illness care are described. Research is needed to: 1) describe the communication and decision-making process in the management of pediatric chronic illness; and 2) evaluate the impact of interventions that enhance collaborative decision-making on provider-family communication, illness management, and treatment adherence.Keywords: collaborative decision-making, shared decision-making, treatment adherence, pediatric chronic illness

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.

Background Research on parental understanding of informed consent for pediatric randomized clinical trials (RCTs) has highlighted weaknesses in understanding of key aspects of informed consent. The goals of the current study were to assess the feasibility of and parental satisfaction with a video intervention to improve informed consent for pediatric leukemia RCTs and to compare parental question asking during informed consent conferences (ICCs) for parents in the current study with historical control data. Procedure A 20-min video was produced. Utilizing the principles of anticipatory guidance, it included information delivered by nurses and physicians about leukemia and key aspects of informed consent. Parents were encouraged to be active participants in ICCs. Participants included 12 parents of children newly diagnosed with pediatric leukemia. The video was viewed by local pediatric oncologists prior to utilization with families. Results Ninety-two percent of parents reported that the video made it easier to understand information that their child's physician later provided; 83% of parents reported that it helped them to think of questions to ask the physician; and 67% of parents indicated that the video made them feel more comfortable with asking questions of the physician. Results of a t-test comparing question asking during ICCs revealed that parents who participated in the intervention asked a higher rate of questions than parents from a historical control sample (t = 1.95, P = 0.05). Discussion Our study supports the feasibility and potential efficacy of a brief video intervention employing anticipatory guidance to prepare parents for future discussions about RCTs. Pediatr Blood Cancer 2010;55:113–118. © 2010 Wiley-Liss, Inc.

Objective Treatment adherence impact (TAI) is the quantification of the effects of adherence behaviors on medical or psychological outcomes using systematic assessment and analytic methods. The purpose of this review is to provide a framework for the measurement and analysis of TAI. Methods Specific studies were selected from the treatment adherence literature to illustrate methods to assess TAI. Results There are many methods available to investigators to evaluate TAI and, when possible, multiple impact outcomes should be included in adherence studies. The methods available to assess TAI and barriers to assessing TAI vary across illness group requiring illness-specific applications of the concepts presented. Conclusions Systematically examining TAI in adherence studies could advance the state of the art of treatment adherence science.

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.

In 1995, the associate editors of the Journal of Pediatric Psychology (JPP) published an article to encourage the submission of case reports, studies, and series (Drotar, LaGreca, Lemanek, & Kazak, 1995), which had been remarkably underrepresented in the portfolio of published articles. Apparently, this article did little to encourage submissions of case studies and series because the situation is unchanged. But being undaunted and persistent, I would like to revisit this issue in light of the continuing importance of case studies and series to the field of pediatric psychology. In its formative years, JPP published many case studies, series, and descriptions of programs (e.g., Bachara & Lamb, 1976; Davidson, Adams, Schroeder, & Tyler, 1978; O’Malley & Koocher, 1977). At that time, pediatric psychologists published such work in order to call attention to important and challenging clinical problems, as well as to share their experiences, ideas, and data concerning clinical practice. Given the state of the art of the science at that time, early case studies and series focused more on description of clinical problems and intervention methods than on empirical demonstrations of treatment efficacy, with some notable exceptions (e.g., Barnard, Christophersen, & Wolf, 1976; Linscheid, Copeland, Jacobstein, & Smith, 1981; Varni, 1980). What conclusion should we draw from the fact that recent submissions to and publications of case studies and series in JPP are so few and far between? Is it the case that the field of pediatric psychology has moved beyond the need for case studies and series to inform clinical practice and research? In fact, the standards for the evaluation of science in our field, including studies of intervention efficacy (Spirito & Kazak, 2006), are much higher now than they were in the early days of the field. Are case studies and series no longer relevant or competitive for publication in JPP? Another possibility is that pediatric psychologists have simply stopped trying to write up their case studies for JPP because they do not see it as a ready outlet for publication. Alternatively, they could be writing them, but submitting them to journals other than JPP. It’s hard to know. As the current editor of JPP, I believe that case studies and series have not outlived their usefulness and that the field of pediatric psychology will continue to benefit from their publication. To address this issue, this editorial has the following goals: (1) underscore the continuing need for the publication of case studies and series in JPP; (2) clarify issues that need to be considered in preparing and reviewing case studies and series; (3) suggest ways to enhance publishability; and (4) invite authors to submit manuscripts that focus on case studies and series.

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.

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.

Objective Study examined content of personal goals, health-related hindrance (HRH; i.e., impact of health on goals), and relationship of HRH to health status and psychological well-being in young adults with cystic fibrosis (CF; n = 48), who survived childhood cancer (n = 57), and without history of chronic illness (n = 105). Methods Participants completed measures of life events, quality of life, psychological well-being, and goals. Results No group differences were found on goal content. HRH significantly related to subjective well-being and distress after controlling for demographics, negative life events, physical health-related quality of life, disease status, and self-efficacy. HRH related to health status variables. Cancer survivors without cancer late effects had significantly less HRH than the other groups. Conclusions Health status may affect pursuit of personal goals and relate to well-being of young adults. The assessment of HRH has potential clinical utility for targeting interventions and warrants further research.

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.

The quality of editorial reviews is critical to the success of any scholarly journal, and the Journal of Pediatric Psychology (JPP) is no exception. Reviewers generously volunteer their time and intellectual energy to provide critiques of manuscripts that serve the critical function of enhancing the quality of science that is published in JPP (Drotar, 2008a). Under tight timelines and in the context of multiple responsibilities, reviewers are asked to assume the difficult task of reviewing manuscripts that are often complex and detailed. Based on my experience over the past 2 years as editor of JPP, previous experience as managing editor, and feedback from JPP’s associate editors, here are some suggestions to enhance the utility and quality of your reviews. Reviewers should also consult the JPP website (www.jpepsy.oxfordjournals.org) for specific guidelines concerning reviews as well as other relevant published sources (Drotar, 2000; Goldbeck-Wood, 1998; Hyman, 1995).

Study Objectives:Developed the Cleveland Adolescent Sleepiness Questionnaire (CASQ), a brief, self-completed instrument to measure excessive daytime sleepiness in adolescents.Design:Cross-sectional...

Objective The objective of the present paper was to determine the association between parent–provider communication and parent ratings of satisfaction and quality of care for a group of parents of children identified with a psychosocial problem. Methods A sample of 804 parents of children with psychosocial concerns enrolled in the Child Behavior Study (CBS) was used for the present analyses. As part of the CBS, parents of children with psychosocial problems answered questions that assessed parent–provider communication and parent ratings of satisfaction and quality of care. Results Overall, parents reported good communication with their child's provider. Eighty-two percent of parents were very satisfied with the care received and 68% reported a very high quality of care. Parent–provider communication (e.g., collaboration and mutual understanding) was strongly related to parental reports of both satisfaction and quality of care. Conclusions Parent–provider communication is an important correlate of parental report of satisfaction and quality of care. Involvement of parents in the treatment planning process was particularly important in determining satisfaction and quality ratings within this sample. Practice implications When working with families with identified psychosocial concerns, the use of collaboration and an empathic style by providers may enhance the quality of care parents report receiving from their primary care clinicians.

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.

Previous studies of CF treatments have shown suboptimal adherence, though little has been reported regarding adherence patterns to ivacaftor. Electronic monitoring (EM) of adherence is considered a gold standard of measurement.Adherence rates by EM were prospectively obtained and patterns over time were analyzed. EM-derived adherence rates were compared to pharmacy refill history and self-report.12 subjects (age 6-48 years; CFTR-G551D mutation) previously prescribed ivacaftor were monitored for a mean of 118 days. Overall adherence by EM was 61% (SD=28%) and decreased over time. Median duration between doses was 16.9 hours (IQR 13.9-24.1 hours) and increased over time. There was no correlation between EM-derived adherence and either refill history (84%, r=0.26, p=0.42) or self-report (100%, r=0.40, p=0.22).Despite the promising nature of ivacaftor, our data suggest adherence rates are suboptimal and comparable to other prescribed CF therapies, and more commonly used assessments of adherence may be unreliable.

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.

STUDY OBJECTIVE Examine the relationship between the sleep behavior of elementary school-aged children and characteristics of the home environment. DESIGN Cross-sectional analysis of children participating in a cohort study. SETTING Cleveland Children's Sleep and Health Study, an ethnically mixed, urban, community-based cohort. PARTICIPANTS Four hundred forty-nine children (50% girls, 46% African-American) aged 8 to 11 years. MEASUREMENTS AND RESULTS Sleep and health data were obtained from a child-completed 7-day sleep journal and caregiver-completed health and sleep questionnaire. Home-environment predictors were Middle-Childhood Home Observation for Measurement of the Environment (MC-HOME) total score and Encouragement of Maturity and Physical Environment subscale scores. Sleep outcomes were mean nightly sleep duration, night-to-night variation in sleep duration, and bedtime of 11 PM or later. Adjusted analyses showed that higher Encouragement of Maturity subscale scores were associated with longer sleep duration (P < .05) and decreased odds of a bedtime at 11 PM or later (odds ratio = .74, 95% confidence interval, .58-.95). In girls, higher Encouragement of Maturity scores were also associated with decreased nightly variation in mean sleep duration (P < .001). Increases in total MC-HOME score were associated with increased mean sleep duration among African-American children only (P < .05). CONCLUSION Collectively, results indicate that a parenting style encouraging social maturity in children is linked to healthier sleep patterns.

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.

doi:10.1093/jpepsy/jsi056 Advance Access publication March 3, 2005 Journal of Pediatric Psychology vol. 30 no. 8 © The Author 2005. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oupjournals.org Commentary: Involving Families in Psychological Interventions in Pediatric Psychology: Critical Needs and Dilemmas

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.

Objective To develop and test a model based on Bandura's social cognitive theory to predict healthy lifestyle behaviors for the prevention of osteoporosis. Methods Participants were 354 girls, ages 8-11 years, recruited from area Girl Scout troops. Baseline data from a randomized trial of behavioral interventions are presented. Measures of social support, knowledge, self-efficacy, dietary calcium intake, and weight-bearing physical activity (WBPA) were obtained via interviews and self-administered questionnaires. Results A structural equation model was tested and fit the data well. Family social support, perceived self-efficacy for eating a calcium-rich diet, and knowledge of WBPA significantly predicted calcium intake. Friend and family support for exercise predicted WBPA. Self-efficacy partially mediated the relationship between family support and calcium intake, as confirmed by Holmbeck's post-hoc probing strategy (2002). Conclusions Suggestions are made for primary prevention interventions such as parent and peer involvement, health education, and problem-solving training.