Journal of Pediatric Psychology - current issue

Introduction to the Special Issue: Psychological Aspects of Genomics and Child Health

Tercyak, K. P. — 2009-06-19

Influences on Child Eating and Weight Development from a Behavioral Genetics Perspective

Kral, T. V. E., Faith, M. S. — 2009-06-19

Childhood obesity is a strong risk factor for associated comorbidities such as type 2 diabetes, cardiovascular disease, and orthopedic abnormalities in youth and its increasing incidents thus represents a major public health concern. The following review provides evidence for a familial association between parental and child weight status, eating behaviors, and food preferences. It further draws the link between environmental influences, such as parent feeding practices, and the development of child eating behaviors and thereby elucidates how genetic and nongenetic influences can contribute to the familial transmission of obesity. We use eating in the absence of hunger, an eating trait which refers to children's susceptibility to eating in response to the presence of palatable foods in the absence of hunger, as an example to illustrate these associations. The review concludes with an outlook on possibilities for future research efforts in the field.

Incorporating the Family as a Critical Context in Genetic Studies of Children: Implications for Understanding Pathways to Risky Behavior and Substance Use

Rende, R., Slomkowski, C. — 2009-06-19

The availability of candidate gene markers for biobehavioral traits will undoubtedly result in increasing attention to genetic influences in studies of childhood risk factors for health behaviors. However, a strict emphasis on genomics without consideration of the social contexts that give rise to risky behaviors will miss opportunities to understand more fully the powerful effect of the family on childhood development. This article discusses the rationale for using the family as a critical context for studying the translation of genetic propensity for risky behavior into developmental pathways that span childhood and adolescence. Attention is given to the importance of family environmental factors; the emerging literature on genetic influences on potential intermediate phenotypes; the need for rich and detailed characterizations of both phenotypes and environmental risk factors embedded within genomic studies of children; and implications for interventions and preventions aimed at risky behaviors. Via discussion of these issues, pragmatic considerations of how studying families as a context may facilitate the thoughtful inclusion of children into genetic paradigms are emphasized.

Adolescent Medical Providers' Willingness to Recommend Genetic Susceptibility Testing for Nicotine Addiction and Lung Cancer Risk to Adolescents

2009-06-19

Objective To examine the influences of disease, lifestyle, and other factors on adolescent medical providers’ willingness to recommend genetic susceptibility testing (GST). Method Providers attending a national conference completed a self-report survey (n = 232) about their willingness to recommend hypothetical GSTs, differentiated by disease (nicotine addiction/lung cancer), patient lifestyle (nonsmoker/smoker), and other contextual factors. Results Compared to recommending GST unconditionally, providers were more willing to recommend GST with parental/patient consent/assent, and in the presence of a preexisting illness and substance abuse history. Compared to offering nicotine addiction GST to a nonsmoker, providers were more willing to offer this type of testing to a smoker and were more willing to offer GST for lung cancer regardless of patient lifestyle. Conclusions Providers’ willingness to recommend GSTs is sensitive to many factors. Efforts to integrate GST into adolescent preventive care likely will need to address these and other influences on provider behavior.

Brief Assessment of Parents' Attitudes Toward Testing Minor Children for Hereditary Breast/Ovarian Cancer Genes: Development and Validation of the Pediatric BRCA1/2 Testing Attitudes Scale (P-TAS)

2009-06-19

Objective Predictive genetic testing for hereditary breast/ovarian cancer risk (BRCA1/2 testing) is not recommended for minor children due to its lack of immediate medical benefit and potential psychological risk. Yet, tested mothers are often interested in learning about their children's cancer risks via pediatric BRCA1/2 testing, raising a host of bioethical concerns. However, no reliable or valid tool exists to formally gauge parents’ interest in such testing. The aim of this study was to develop and evaluate a new measure for use in genetic research and consultation, known as the Pediatric BRCA1/2 Testing Attitudes Scale (P-TAS). Methods After pretest genetic counseling and provision of a blood sample for BRCA1/2 testing, the P-TAS was administered to 187 mothers of children between 8- and 21-years-old. The measure was also given to 96 of the mothers’ nontested co-parents. Analyses of the factor structure and psychometric properties of the measure were performed in mothers and confirmed in their co-parents. Results The two factors of the P-TAS, labeled Attitudes and Beliefs (Factor 1) and Decision Making and Communication (Factor 2), accounted for 62.9% of the variance and were reliable (Cronbach's coefficient s =.70 and.90, respectively); the structure and properties were largely confirmed among co-parents. Validity was indicated through its convergence with related constructs. Conclusions This new tool may be integrated into genetic counseling research to better assess parents’ attitudes and interests in pediatric BRCA1/2 testing. Such information may help guide ongoing discussions about the appropriateness of testing in adolescent or young adult children.

From Genetics to Genomics: Ethics, Policy, and Parental Decision-making

Wilfond, B., Ross, L. F. — 2009-06-19

Objective Ethical evaluation of genetic testing in children is traditionally based on balancing clinical benefits and risks. However, this focus can be inconsistent with the general practice of respecting parental decision-making about their children's health care. We argue that respect for parental decision-making should play a larger role in shaping pediatric genetic testing practices, and play a similar role regarding decisions to use emerging genomic technologies. Methods Genomic testing involves the examination of thousands of DNA markers spanning genes throughout the genome and their interrelationships, yielding virtually limitless interpretations. We presume that parents and providers should proceed cautiously in applying genomic testing in children, as we explore how genomic testing will stress the fault lines of the traditional ethical analysis. Results Empirical data about the psychosocial risks and benefits of genetic testing of children do not reveal serious harms, yet virtually no such data exist yet about genomic testing. Unless empirical social and behavioral data indicate that genomic testing is highly likely to cause serious harms to the children, parental decisions to obtain comprehensive genomic testing in their children should be respected. Once comprehensive genomic testing of children becomes routine, resultant information may be more easily integrated by families than anticipated. Conclusions Research on the social and behavioral impact of comprehensive genomic testing on children and their families is needed to further inform parents, clinicians, and policy makers.

Supporting Family Adaptation to Presymptomatic and "Untreatable" Conditions in an Era of Expanded Newborn Screening

Bailey, D. B., Armstrong, F. D., Kemper, A. R., Skinner, D., Warren, S. F. — 2009-06-19

Objective As technology advances, newborn screening will be possible for conditions not screened today. With an expansion of screening, strategies will be needed to support family adaptation to unexpected and possibly uncertain genetic information provided shortly after birth. Method Although candidate conditions for expanded newborn screening will typically be associated with increased morbidity or mortality, for most there is no proven medical treatment that must be implemented quickly. Many will have clinical features that gradually emerge and for which the severity of impact is not predictable. Parents will seek guidance on information, support, and treatment possibilities. This article summarizes issues evoked by expanded newborn screening and suggests strategies for supporting families of identified children. Results We propose four components necessary to support family adaptation to pre-symptomatic and "untreatable" conditions in an era of expanded newborn screening: (1) accurate and understandable information; (2) formal and informal support; (3) active surveillance; and (4) general and targeted interventions. We argue that no condition is "untreatable" and that a well-designed program of prevention and support has the potential to maximize benefit and minimize harm. Conclusions Pediatric psychologists can play important roles in an era of expanded newborn screening by helping families understand genetic information, make informed decisions about genetic testing, and cope with the potential psychosocial consequences of genetic information.

Commentary: Trailblazing a Research Agenda at the Interface of Pediatrics and Genomic Discovery--a Commentary on the Psychological Aspects of Genomics and Child Health

McBride, C. M., Guttmacher, A. E. — 2009-06-19

Unprecedented advances in human genome science are underway with potential to benefit public health. For example, it is estimated that within a decade, geneticists and epidemiologists will complete a catalog of the majority of genes associated with common chronic diseases. Such rapid advances create possibilities, if not the mandate, for translational research in how best to apply these and other anticipated discoveries for both individual and population health benefit. Driving these discoveries are rapid advances in infrastructure (e.g., the International HapMap Project to catalog human genetic variation; http://www.hapmap.org), analytical methods, and technology. This expansion in capabilities quickly has taken us from a genetics paradigm—where the influence of individual genes on health outcomes is paramount, to a genomics paradigm—where the complex influence of individual genes is considered in concert with each other and with environmental exposures on health outcomes. We discuss these and similar groundbreaking discoveries with an eye toward understanding their importance to child health and human development, and the role of behavioral science research conducted at the interface of pediatrics and genomic discovery.

Sleep in Children with Chronic Illness, and the Relation to Emotional and Behavioral Problems--A Population-Based Study

Hysing, M., Sivertsen, B., Stormark, K. M., Elgen, I., Lundervold, A. J. — 2009-06-19

Objective To examine sleep and sleep problems in children with chronic illness, and the potential effect of emotional and behavioral problems. Methods The Bergen Child Study is a total population study. Based on data from the second wave, information about sleep was given by 5,781 children and their parents, of which 496 children (8.6%) had a chronic illness. Results There were no differences in time in bed between children with a chronic illness and their healthy peers. However, the chronic illness group reported more problems falling asleep and had more nighttime awakenings. The increased risk for sleep problems was reduced to a nonsignificant level when adjusting for emotional and behavioral problems. Conclusions The elevated rate of sleep problems and association with emotional and behavioral problems in children with chronic illness underline the importance of early detection and intervention in this group.

Parental Reactions Following the Diagnosis of Cerebral Palsy in Their Young Child

Rentinck, I., Ketelaar, M., Jongmans, M., Lindeman, E., Gorter, J. W. — 2009-06-19

Objective To investigate parental reactions following the diagnosis of cerebral palsy (CP) in their young children. Methods In this cross-sectional study, 51 parents of children with CP (mean age = 18.5 months, SD = 1.5) completed the Reaction to Diagnosis Interview, assessing their personal reactions to their children's diagnosis. Relationships between these reactions and the severity of CP in terms of motor abilities and the child's cognitive functioning, as well as coping of parents and perceived social support, were investigated using univariate and multivariate logistic regression analyses. Results Thirty-nine parents (77%) were classified as "resolved." Multivariate regression analysis revealed that severity of CP was associated with an "unresolved" status. Conclusion The majority of parents of children with CP have come to terms with this diagnosis by the time their children is 18 months old. The child's gross motor limitations seem to represent an important factor explaining negative parental reactions at this time.

Brief Report: A Qualitative Analysis of Discussions about HIV in Families of Parents with HIV

2009-06-19

Objective To explore communication about HIV prevention, risk behaviors, and transmission in families affected by HIV. Methods Semi-structured interviews were conducted with 33 parents with HIV, 27 children (9- to 17-years old), and 19 adult children (≥18-years old) across the U.S. Coders reviewed transcripts, identified themes, and coded transcripts. Results Youth felt uncomfortable discussing HIV with their parent who has HIV because they worried about upsetting and reminding the parent of his/her illness. Adult children reported learning about HIV prevention by watching how the illness affected their parents. Few siblings reported talking with one another about HIV because they worried about upsetting their brother/sister and about their sibling unintentionally disclosing the parent's illness to others. Conclusions Discussions between youth and their parent with HIV and their siblings vary, highlighting the need for further research in this area.

Profiles of Service Utilization and the Resultant Economic Impact in Preschoolers With Attention Deficit/Hyperactivity Disorder

2009-06-19

Objective To examine whether preschool children with Attention deficit/hyperactivity disorder (ADHD) utilize more speech and language therapy (ST), occupational therapy (OT), and physical therapy (PT) services and are more likely to be placed in special education (SPED) classrooms as compared to their peers. Corresponding financial consequences were also examined. Methods The amount of ST, OT, and PT, as well as SPED placements, was examined in 3- and 4-year-old children with and without ADHD (n = 109 and n = 97, respectively) during the baseline portion of an ongoing, 5-year longitudinal study. Costs for individual services and aggregate cost were determined per child and compared across groups. Results Preschool children with ADHD were more likely to receive individual and multiple services. Higher rates of service utilization translated into increased costs for each individual service with the exception of PT. Conclusions A comprehensive understanding of service utilization in the early years of development is important in addressing the increased service use in the preschool years and assist in guiding allocation of resources.

Special Acknowledgment of Reviewers

2009-06-19