Sunita K. Patel

BACKGROUND: The experience of children undergoing hematopoietic stem cell transplantation (HSCT), including the ways in which different participants (ie, children, parents, and nurses) contribute to the overall picture of a child's experience, is poorly characterized. This study evaluated parent, child, and nurse perspectives on the experience of children during HSCT and factors contributing to interrater differences.METHODS: Participants were enrolled in a multicenter, prospective study evaluating child and parent health‐related quality of life over the year after HSCT. Children (n = 165) and their parents and nurses completed the Behavioral, Affective, and Somatic Experiences Scale (BASES) at baseline (before/during conditioning), 7 days after the stem cell infusion (day+7), and 21 days after the stem cell infusion (day+21). The BASES domains included Somatic Distress, Mood Disturbance, Cooperation, and Getting Along. Higher scores indicated more distress/impairment. Repeated measures models by domain assessed differences by raters and changes over time and identified other factors associated with raters' scores.RESULTS: Completion rates were high (≥73% across times and raters). Multivariate models revealed significant time‐rater interactions, which varied by domain. For example, parent‐rated Somatic Distress scores increased from baseline to day+7 and remained elevated at day+21 (P< .001); children's scores were lower than parents' scores across time points. Nurses' baseline scores were lower than parents' baseline scores, although by day+21 they were similar. Older child age was associated with higher Somatic Distress and Mood Disturbance scores. Worse parent emotional functioning was associated with lower scores across raters and domains except for Cooperation.CONCLUSIONS: Multirater assessments are highly feasible during HSCT. Ratings differ by several factors; considering ratings in light of such factors may deepen our understanding of the child's experience.Cancer2017;123:3159–66.©2017 American Cancer Society.

Parents often experience stress-related complications when their child requires blood and marrow transplant (BMT). Previous studies have described the emotional toll BMT places on parents during the acute phase of care and within the context of clinical complications. In this paper we introduce the Parent Impact Scale (PARimpact), designed to capture physical and emotional challenges of the child’s health on the parent. The primary aim of this paper is to examine psychometric properties of PARimpact, and the secondary aim is to explore factors associated with PARimpact scores for further hypothesis generation. This analysis used a merged dataset of two longitudinal studies. Accompanying parents (n = 363) of children undergoing BMT were surveyed up to six times from pre-BMT baseline to one year after their child’s BMT. For this analysis, pre-BMT baseline responses to PARimpact were used to examine the factor structure with Principal Component Analysis (PCA) and Exploratory Factor Analysis (EFA). Construct validity was assessed, and multivariable regression was used to examine relationships between PARimpact and BMT clinical variables. PCA and EFA revealed a one-factor solution with acceptable item loading; Cronbach’s α was 0.83 at baseline. Hypothesized differences in known groups were detected for BMT complications with significantly higher PARimpact scores for those with vs. without each complication. In the adjusted multivariable regression models, acute graft versus host disease (b = 5.3; p = 0.03), end organ toxicity (b = 5.9; p < 0.01), and systemic infection (b = 9.1; p < 0.01) were associated with significantly higher mean PARimpact scores in the first 3 months following transplant. After the first 3 months to 1 year post BMT, systemic infection was associated with increased mean PARimpact scores (b = 19.2; p < 0.01). Initial results suggest that the PARimpact is valid and reliable. Our finding that clinical complications increase the impact of BMT on the caretaking parent indicates the need for BMT healthcare professionals to identify these events and help parents navigate the BMT course. Clinical application of the PARimpact scale should be considered to identify high-risk families and provide targeted interventions to augment care.

Background: The IQ declines observed in children treated for brain tumor emerge as “late effects” and are conceptualized as secondary to changes in underlying mental processes, such as attention. Early identification of the underlying changes might help minimize the long‐term adverse outcomes. We evaluated the validity of a time‐efficient, standardized parent‐report measure in identifying attention dysfunction in childhood brain tumor survivors.Procedure: Seventy survivors between ages 6 and 16 who met eligibility criteria and who had completed a standard neuropsychological evaluation were classified into an attention dysfunction group and a non‐attention dysfunction group, based on their performance on objective measures of attention. Analysis of covariance was used to evaluate group differences on the widely used, parent report Child Behavioral Checklist (CBCL).Results: Survivors in the attention dysfunction group were reported by their parents as having significantly more attention problems relative to the group without attention dysfunction on objective testing. Furthermore, survivors categorized as having attention dysfunction based on their neuropsychological test scores were reported on the CBCL by their parents as having significantly more social problems compared to the non‐attention dysfunction group.Conclusions: Standardized parent reporting of attention problems shows promise as a screening tool to detect attention dysfunction among survivors of childhood brain tumors. Findings include a strong association of decreased social functioning with attention dysfunction in brain tumor survivors. Furthermore, exploratory data suggest that the behavioral presentation of attention dysfunction in this group may be different from other clinical groups. Pediatr Blood Cancer 2007;49:970–974.

Psychologists have played a significant role in identifying and facilitating understanding of neurocognitive outcomes in children and adolescents surviving cancer. Moore (this issue) provides an excellent overview of the salient medical and demographic predictors of adverse neurocognitive impact, while Butler and Mulhern (this issue) describe promising findings from recent pioneering studies aimed at treating cognitive and neurobehavioral side effects. Moore’s discussion of past research gains is notable for its integration of a neuropathological perspective with select findings from animal model studies. Butler and Mulhern’s discussion is similarly exceptional for integration of perspectives not commonly elaborated upon in articles on the neurocognitive functioning of childhood cancer survivors. Specifically, they discuss the potential importance of a “psychotherapeutic” component, along with “family environment” and school-based “ecological interventions” in cognitive remediation intervention programs. This expansive rehabilitation model, when viewed with Moore’s discussion of neurobiological underpinnings, reflects a movement toward greater conceptual integration. This is a trend that we, as early career investigators, hope will increasingly materialize as psychologists continue to study neurocognitive issues in childhood cancer survivors. There are several areas in which we anticipate research to evolve in the next decade.