Robert D. Annett

Factors influencing parent reports on quality of Life for children with asthma

Children and parents often differ in their perceptions of a complex disease such as asthma. This ancillary study of children with mild to moderate asthma that was conducted at four of the eight clinics in the Childhood Asthma Management Program had two aims: (1) to relate quality of life to asthma symptoms, sociodemographic characteristics, child psychosocial adjustment and family social support and (2) to relate agreement between child- and parent-reported quality of life to child age. For this study participants completed the Caregivers Pediatric Asthma Quality of Life Questionnaire (C-PAQLQ), Pediatric Asthma Quality of Life Questionnaire, and a battery of psychosocial health outcomes questionnaires at the 12-month follow-up. The average asthma symptom score from diary cards for the 2 weeks before the visit was also collected. Parent-reported family burden was the strongest correlate of C-PAQLQ scores. Although the average asthma symptom score was not associated with parent-reported quality of life, the study had low power to detect a relationship because of the few episodes of asthma reported during the assessment period. The correlation between child and parent reported quality of life improved with increasing age of the child, suggesting increased child-parent agreement about quality of life outcomes was associated with increasing age of the child. Family characteristics, such as degree of cohesion among family members, are not associated with quality of life ratings.

Voluntary Assent in Biomedical Research With Adolescents: A Comparison of Parent and Adolescent Views

An informed consent and voluntary assent in biomedical research with adolescents is contingent on a variety of factors, including adolescent and parent perceptions of research risk, benefit, and decision-making autonomy. Thirty-seven adolescents with asthma and their parents evaluated a high or low aversion form of a pediatric asthma research vignette and provided an enrollment decision; their perceptions of family influence over the participation decision; and evaluations of risk, aversion, benefit, and burden of study procedures. Adolescents and their parents agreed on research participation decisions 74% of the time, yet both claimed ultimate responsibility for the participation decision. Both rated most study procedures as significantly more aversive than risky. Parents were more likely to rate aspects of the hypothetical study as beneficial and to provide higher risk ratings for procedures. Disagreements concerning research participation decisions and decision-making autonomy have implications for the exercise of voluntary assent in biomedical research.

Family and Physician Influence on Asthma Research Participation Decisions for Adolescents: The Effects of Adolescent Gender and Research Risk

OBJECTIVE. There is considerable ethical and legal ambiguity surrounding the role of adolescents in the decision-making process for research participation. Depending on the nature of the study and the regulations involved, adolescents may have independent responsibility for providing informed consent, they may be asked to provide their assent, or they may be completely excluded from the decision-making process. This study examined parent and adolescent perceptions of decision-making authority and sources of influence on adolescent research participation decisions, and examined whether perceptions of influence differed based on adolescent gender and level of research risk. STUDY DESIGN: Adolescents (n = 36) with asthma and their parents reviewed 9 pediatric research protocols, decided whether they would choose to participate, rated the extent they would be responsible for the actual decision, and indicated the ability of family and physician to influence their decisions. Multivariate analyses of variance were used to evaluate differences in perceptions of decision-making authority and sources of influence on the decisions. RESULTS: Adolescents were less willing to cede decision making authority to parents than parents anticipated. Parents and adolescents acknowledged a greater openness to influence from physicians than from family for above minimal risk studies. Parents were more willing to consider opinions from male adolescents. CONCLUSIONS: Adolescents desire responsibility for research participation decisions, though parents may not share these views. Physicians’ views on research participation are important to families, especially for above minimal risk studies. Parents may grant more decision-making autonomy to adolescent males than to females. Researchers, physicians, and institutions play a key role in facilitating the ethical enrollment of adolescents into biomedical research. Educational, policy, and oversight processes that support both adolescent autonomy and parental responsibility for research participation decision-making in biomedical research are discussed.

Children's Oncology Group's 2013 blueprint for research: Behavioral science

Behavioral science has long played a central role in pediatric oncology clinical service and research. Early work focused on symptom relief related to side effects of chemotherapy and pain management related to invasive medical procedures. As survival rates improved, the focused has shifted to examination of the psychosocial impact, during and after treatment, of pediatric cancer and its treatment on children and their families. The success of the clinical trials networks related to survivorship highlights an even more critical role in numerous domains of psychosocial research and care. Within the cooperative group setting, the field of behavioral science includes psychologists, social workers, physicians, nurses, and parent advisors. The research agenda of this group of experts needs to focus on utilization of psychometrically robust measures to evaluate the impact of treatment on children with cancer and their families during and after treatment ends. Over the next 5 years, the field of behavioral science will need to develop and implement initiatives to expand use of standardized neurocognitive and behavior batteries; increase assessment of neurocognition using technology; early identification of at‐risk children/families; establish standards for evidence‐based psychosocial care; and leverage linkages with the broader behavioral health pediatric oncology community to translate empirically supported research clinical trials care to practice. Pediatr Blood Cancer 2013; 60: 1048–1054.

Implementation of multi-site neurocognitive assessments within a pediatric cooperative group: Can it be done?†

Neurocognitive functioning is an important construct in childhood cancer survivorship, given the potential neurotoxicity of central nervous system (CNS) diseases and treatments and the relevance for important functional outcomes in adulthood. However, within pediatric oncology cooperative groups there have been significant barriers to neurocognitive data collection that have historically resulted in incomplete data (<30% compliance), thereby limiting progress in understanding the neurocognitive functioning of survivors. This paper describes the development, feasibility, and potential efficacy of a brief neurocognitive battery to maximize collection of psychometrically robust neurocognitive data within a pediatric cooperative group. We hypothesized that a novel set of procedures could result in collection of data from over 80% of eligible children.

Neurocognitive functioning and health-related behaviours in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study.

BACKGROUND Positive health-related behaviours are essential for the future wellbeing of childhood cancer survivors, though relatively few maintain healthy behaviours into adulthood. METHODS Neurocognitive function and emotional distress were examined in 6,440 adult survivors from the Childhood Cancer Survivor Study, and used to predict rates of expected health-related behaviours. Covariates included cancer diagnosis, age, sex, body mass index, insurance status, income and antidepressant medication use, and multivariable models were constructed adjusting for these factors. FINDINGS In multivariable regression models, survivors with neurocognitive problems in task efficiency (RR=0.77, 95% CI=0.72-0.84) were less likely to meet the Centers for Disease Control guidelines for weekly physical activity. Survivors with neurocognitive impairment were more likely to engage in general survivor care (RR=1.20, 95% CI=1.10-1.30), and less likely to engage in dental care (RR=0.92, 95% CI=0.88-0.97). Obese survivors were less likely to report receiving a bone density exam (RR=0.67, 95% CI=0.54-0.82), a mammogram (RR=0.71, 95% CI=0.57-0.89), and a skin exam (RR=0.78, 95% CI=0.68-0.89). Survivors reporting somatisation, i.e. vague physical symptoms associated with anxiety, were more likely to report receiving echocardiograms (RR=1.53, 95% CI=1.32-1.77). INTERPRETATION These results support the link between neurocognitive and emotional problems and health-related behaviours in adult survivors of childhood cancer. Monitoring neurocognitive and emotional outcomes may help to identify survivors at risk for poor adherence to prescribed health behaviours and health screening exams.

Monitoring and Assessment of Neuropsychological Outcomes as a Standard of Care in Pediatric Oncology

Central nervous system cancers or exposure to CNS‐directed therapies increase risk for neuropsychological deficits. There are no accepted guidelines for assessment of neuropsychological functioning in this population. A multifaceted literature search was conducted and relevant literature reviewed to inform the guidelines. Studies of neuropsychological outcomes are widely documented in the pediatric oncology literature. There is strong evidence of need for neuropsychological assessment, but insufficient evidence to guide the timing of assessment, nor to recommend specific interventions. Children with brain tumors and others at high risk for neuropsychological deficits should be monitored and assessed for neuropsychological deficits. Pediatr Blood Cancer 2015;9999:1–52.

Parental stress predicts functional outcome in pediatric cancer survivors

Childhood cancer survivors are at risk for long‐term neurocognitive and psychosocial morbidities. Research has seldom examined the relationship between these morbidities; thus, little empirical evidence exists concerning overall salience and how morbidities converge to impair day‐to‐day functioning. An increased understanding of functional impairment resulting from the pediatric cancer experience can inform early risk identification as well as sources for intervention. The purpose of this study was to characterize the frequency/severity of functional impairment and identify significant neurocognitive and psychosocial determinants of functional impairment.

Neuropsychological dysfunction in asthmatic children

Neuropsychological dysfunction associated with pediatric asthma is reviewed. Significant methodological confounds associated with clinical research, including problems with the objective measure of asthma, are prevalent in many studies. Most evidence does not support the belief that asthma alone results in homogeneous neuropsychological compromise. Studies of adverse reactions to asthma medications indicate medication-specific effects including slight improvements in some aspects of neuropsychological functioning, such as attention, and deficiencies in other aspects of neuropsychological functioning, such as memory. The acute neuropsychological effects of various medication regimens appears to be reversible with cessation of the asthma medication under suspicion, although no data yet exist regarding the long-term effects of therapeutic dosages of asthma medications upon a developing nervous system. The hypothetical effects of asthma on school performance have been related to non-neuropsychological variables such as a childs socioeconomic status, though there is also evidence suggesting that poorly controlled asthma is related to learning problems. Implications for pediatric neuropsychologists are discussed.

Empirically Derived Knowledge on Adolescent Assent to Pediatric Biomedical Research

Background: There has been a recent growth in empirical research on assent with pediatric populations, due in part to the demand for increased participation of this population in biomedical research. Despite methodological limitations, studies of adolescent capacities to assent have advanced and identified a number of salient psychological and social variables that are key to understanding assent. Methods: The authors review a subsection of the empirical literature on adolescent assent focusing primarily on asthma and cancer therapeutic research; adolescent competencies to assent to these studies; perceptions of protocol risk and benefit; the effects of various social context variables on adolescent research participation decision making; and the interrelatedness of these psychological and social factors. Results: Contemporary studies of assent, using multivariate methods and updated approaches to statistical modeling, have revealed the importance of studying the intercorrelation between adolescents’ psychological capacities and their ability to employ these capacities in family and medical decision-making contexts. Understanding these dynamic relationships will enable researchers and ethicists to develop assent procedures that respect the authority of parents, while at the same time according adolescents appropriate decision-making autonomy. Conclusions: Reviews of empirical literature on the assent process reveal that adolescents possess varying capacities for biomedical research participation decision making depending on their maturity and the social context in which the decision is made. The relationship between adolescents and physician-investigators can be used to attenuate concerns about research protocols and clarify risk and benefit information so adolescents, in concert with their families, can make the most informed and ethical decisions. Future assent researchers will be better able to navigate the complicated interplay of contextual and developmental factors and develop the empirical bases for research enrollment protocols that will support increased involvement of adolescents in biomedical research.