Martha A. Askins

Preventing Neurocognitive Late Effects in Childhood Cancer Survivors

Neurocognitive late effects are common sequelae of cancer in children, especially in those who have undergone treatment for brain tumors or in those receiving prophylactic cranial radiation therapy to treat leukemia. Neurocognitive morbidity in attention, executive functioning, processing speed, working memory, and memory frequently occurs and contributes to declines in intellectual and academic abilities. Oncologists are faced with the challenge of using the most effective, often the most intense, therapy to achieve the primary goal of medical success, balanced with the desire to prevent adverse late effects. Not all children with similar diagnoses and treatment have identical neurocognitive outcomes; some do very poorly and some do well. Attention now turns to the reliable prediction of risk for poor outcomes and then, using risk-adapted therapy, to preserve neurocognitive function. Prevention of late effects through rehabilitative strategies, continuation of school, and pharmacotherapy will be explored.

Specificity of Problem-Solving Skills Training in Mothers of Children Newly Diagnosed With Cancer: Results of a Multisite Randomized Clinical Trial

PURPOSE Diagnosis of cancer in a child can be extremely stressful for parents. Bright IDEAS, a problem-solving skills training (PSST) intervention, has been shown to decrease negative affectivity (anxiety, depression, post-traumatic stress symptoms) in mothers of newly diagnosed patients. This study was designed to determine the specificity of PSST by examining its direct and indirect (eg, social support) effects compared with a nondirective support (NDS) intervention. PATIENTS AND METHODS This randomized clinical trial included 309 English- or Spanish-speaking mothers of children diagnosed 2 to 16 weeks before recruitment. Participants completed assessments prerandomization (T1), immediately postintervention (T2), and at 3-month follow-up (T3). Both PSST and NDS consisted of eight weekly 1-hour individual sessions. Outcomes included measures of problem-solving skill and negative affectivity. RESULTS There were no significant between-group differences at baseline (T1). Except for level of problem-solving skill, which was directly taught in the PSST arm, outcome measures improved equally in both groups immediately postintervention (T2). However, at the 3-month follow-up (T3), mothers in the PSST group continued to show significant improvements in mood, anxiety, and post-traumatic stress; mothers in the NDS group showed no further significant gains. CONCLUSION PSST is an effective and specific intervention whose beneficial effects continue to grow after the intervention ends. In contrast, NDS is an effective intervention while it is being administered, but its benefits plateau when active support is removed. Therefore, teaching coping skills at diagnosis has the potential to facilitate family resilience over the entire course of treatment.

Interventions to improve neuropsychological functioning in childhood cancer survivors

A very brief historical review on the identification of neurocognitive deficits in patients treated for a pediatric malignancy that involved CNS disease, treatment, or a combination is provided. This review is particularly directed toward providing a foundation upon which the introduction of specific brain injury rehabilitation efforts and subsequent research were introduced into this population of patients. Three primary methods by which clinicians and researchers have attempted to improve neurocognitive functioning with survivors of pediatric cancer that have suffered a CNS insult are identified. From a pharmacological perspective, research is reviewed that documents the potential beneficial effects of stimulant medication. Results of two drug trials that used double-blind crossover methodology are reviewed, and it is highly likely that medications may be of significant benefit to pediatric cancer survivors who are experiencing attentional deficits, impairment in social functioning, and also declines in academic achievement. We next describe psychologically based brain injury rehabilitation efforts, including on-treatment schooling and reentry, within the survivor population. A phase III clinical trial of a comprehensive rehabilitation approach is discussed in detail. New directions in the area of brain injury rehabilitation for childhood cancer survivors are presented, and the need for professionals in this area to work toward a team approach is emphasized.

Qualitative Analysis of the Role of Culture in Coping Themes of Latina and European American Mothers of Children With Cancer

It has been well established that mothers of children diagnosed with cancer experience high levels of distress. Latina mothers may be at risk for higher levels of distress related to language barriers, cultural factors, and economic, immigration, and acculturation stressors. Despite the increasing US Latino population, few studies have examined the role of culture within pediatric oncology, including how mothers cope with their childs cancer. This study used qualitative analysis of 24 sessions from 3 Latina and 3 European American mothers of children recently diagnosed with cancer. The session transcripts were divided into a total of 2328 thought segments that were then analyzed for themes using a collaborative iterative process. Analysis identified 9 shared coping themes that included, with some variations: gathering information, professional help-seeking, activities, problem solving, positive thinking, present orientation, reframing, avoidance, and religion. Three themes were culture specific: only European American mothers discussed compromise, whereas normalization and perspective taking were unique to the Latina mothers and suggest that the cultural value of simpatía influences coping. Clinical and research recommendations are discussed.

Brief Report: Problem Solving and Maternal Distress at the Time of a Child's Diagnosis of Cancer in Two-Parent Versus Lone-Parent Households

OBJECTIVE To examine negative affectivity and problem-solving abilities for lone mothers and those who are married/partnered subsequent to a childs diagnosis with cancer. METHODS Negative affectivity and problem-solving strategies were assessed for 464 mothers (87 lone and 377 married/partnered) within 2-16 weeks of their childs diagnosis with cancer. RESULTS The two groups of mothers did not differ significantly on measures of perceived posttraumatic stress or problem-solving; lone mothers reported significantly more symptoms of depression. This difference was no longer significant when maternal education was taken into account. CONCLUSIONS Negative affectivity and problem-solving abilities were similar for lone mothers and those that are married/partnered shortly after their child has been diagnosed with cancer. Findings are discussed within the context of contemporary strategies to assess marital status as proxy variable for various underlying constructs.

Feasibility, reliability, and validity of the pediatric quality of life inventory™ generic core scales, cancer module, and multidimensional fatigue scale in long-term adult survivors of pediatric cancer†

Most health‐related quality of life assessments are designed for either children or adults and have not been evaluated for adolescent and young adult survivors of pediatric cancer. The objective of this study was to examine the feasibility, reliability, and validity of the Pediatric Quality of Life Inventory (PedsQLTM) Generic Core Scales, Cancer Module, and Multidimensional Fatigue Scale in adult survivors of pediatric cancer.

Provider Perspectives on the Implementation of Psychosocial Risk Screening in Pediatric Cancer

Objective Psychosocial risk screening is an important initial step in delivering evidence-based care. This qualitative descriptive study identified how multidisciplinary pediatric oncology health-care providers perceive psychosocial risk screening to identify factors in uptake and implementation. Methods A script guided digitally recorded (transcribed) interviews regarding psychosocial screening and challenges to facilitators of screening. Participants were 15 multidisciplinary staff (physicians, nurses, social workers, psychologists, physician assistant) at nine sites, three using the Psychosocial Assessment Tool© for research and six for clinical care. Constant comparative analysis was used to analyze the independently coded interviews. Results Thematic content analysis identified an overarching theme - Screening is important because it facilitates clinical care - and four subthemes: Optimizing Psychosocial Care, Implementing Screening, Engaging Families, and Utilizing Clinical Pathways. Conclusions Findings support the importance of integrating psychosocial risk screening into clinical care and offer strategies for implementation of screening across a range of settings.

Evaluation of the psychometric properties of the Pediatric Parenting Stress Inventory (PPSI).

OBJECTIVE This work evaluated the psychometric properties of the Pediatric Parenting Stress Inventory (PPSI), a new measure of problems and distress experienced by parents of children with chronic illnesses. METHOD This secondary data analysis used baseline data from 1 sample of English-, Spanish-, and Hebrew-speaking mothers of children recently diagnosed with cancer (n = 449) and 1 sample of English- and Spanish-speaking mothers of children recently diagnosed with cancer (n = 399) who participated in 2 problem-solving skills training interventions. The PPSI was administered at baseline with other measures of maternal distress. Factor structure was evaluated using exploratory factor analysis (EFA) on the first sample and confirmatory factor analysis (CFA) on both samples. Internal consistency was evaluated using Cronbachs alpha. Construct validity was assessed via Spearman correlations with measures of maternal distress. RESULTS EFA resulted in a stable four-factor solution with 35 items. CFA indicated that the four-factor solution demonstrated reasonable fit in both samples. Internal consistency of the subscales and full scale was adequate to excellent. Construct validity was supported by moderate to strong correlations with measures of maternal distress, depression, and posttraumatic stress symptoms. CONCLUSIONS The PPSI demonstrated good psychometric properties in assessing current problems and distress experienced by mothers of children newly diagnosed with cancer. This tool may be used to identify individualized targets for intervention in families of children with cancer. Future studies could evaluate the utility and psychometrics of the PPSI with other pediatric populations.

Screening for Family Psychosocial Risk in Pediatric Cancer: Validation of the Psychosocial Assessment Tool (PAT) Version 3

Objective Family psychosocial risk screening is an important initial step in delivering evidence-based care. The Psychosocial Assessment Tool (PAT) is a brief parent report screener based on the trilevel Pediatric Psychosocial Preventative Health Model (PPPHM; Universal, Targeted, Clinical). The current article validates a revised PAT (version 3.0) in pediatric oncology that includes new items (for families of younger patients; clinically relevant risk items) and applicable to broad health literacy levels (a 4th grade reading level). Methods Primary caregivers of 394 children newly diagnosed with cancer participated in this multisite investigation, completing the PAT and validation measures using REDCap. Results The original structure of the PAT, with seven subscales (Family Structure, Social Support, Child Problems, Sibling Problems, Family Problems, Stress Reactions, and Family Beliefs) was supported using a confirmatory factor analysis. Internal consistency for the total score (Kuder-Richardson 20 coefficient [KR20] = 0.81) and the subscales (KR20 = 0.59-0.85) was moderate to strong. Moderate to strong correlations with the criteria measures provided validation for the total and subscale scores. The validation measures varied significantly, as expected, across the three levels of the PPPHM. Receiver operating characteristic (ROC) analyses showed that the PAT total and subscale scores can discriminate families above and below clinical thresholds. Conclusions Results reinforce the psychometric properties of this approach for screening of family psychosocial risk. The PAT provides an evidence-based screener that identifies families at three levels of risk and can provide the basis for further evaluation and treatment of children with cancer and their families.

The psychosocial effects of the Li-Fraumeni Education and Early Detection (LEAD) program on individuals with Li-Fraumeni syndrome

Purpose:In the past 5 years, new screening protocols have been developed that provide improved cancer screening options for individuals with Li-Fraumeni syndrome (LFS). Very little has been published on the psychosocial impact of these screening protocols. The goals of this study were to determine how participation in screening impacts individuals psychosocially, to examine the benefits and drawbacks of screening, and to evaluate possible barriers to continued screening.Methods:We performed a qualitative study consisting of semistructured phone interviews conducted from December 2015 to February 2016 with 20 individuals attending the LFS screening program at MD Anderson Cancer Center.Results:Data analysis showed that benefits of screening include early detection, peace of mind, centralized screening, knowledge providing power, and screening making LFS seem more livable. Perceived drawbacks included logistical issues, difficulty navigating the system, screening being draining, and significant negative emotional reactions such as anxiety, fear, and skepticism. Regardless of the emotions that were present, 100% of participants planned on continuing screening in the program.Conclusion:Our data indicate that the perceived benefits of screening outweigh the drawbacks of screening. Individuals in this screening program appeared to have improved psychosocial well-being because of their access to the screening program.Genet Med advance online publication 16 March 2017