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Background Adolescents and young adults (AYAs) with cancer demonstrate suboptimal oral chemotherapy adherence, increasing their risk of cancer relapse. It is unclear how everyday time-varying contextual factors (eg, mood) affect their adherence, stalling the development of personalized mobile health (mHealth) interventions. Poor engagement is also a challenge across mHealth trials; an effective adherence intervention must be engaging to promote uptake. Objective This protocol aims to determine the temporal associations between daily contextual factors and 6-mercaptopurine (6-MP) adherence and explore the proximal impact of various engagement strategies on ecological momentary assessment survey completion. Methods At the Children’s Hospital of Philadelphia, AYAs with acute lymphoblastic leukemia or lymphoma who are prescribed prolonged maintenance chemotherapy that includes daily oral 6-MP are eligible, along with their matched caregivers. Participants will use an ecological momentary assessment app called ADAPTS (Adherence Assessments and Personalized Timely Support)—a version of an open-source app that was modified for AYAs with cancer through a user-centered process—and complete surveys in bursts over 6 months. Theory-informed engagement strategies will be microrandomized to estimate the causal effects on proximal survey completion. Results With funding from the National Cancer Institute and institutional review board approval, of the proposed 30 AYA-caregiver dyads, 60% (18/30) have been enrolled; of the 18 enrolled, 15 (83%) have completed the study so far. Conclusions This protocol represents an important first step toward prescreening tailoring variables and engagement components for a just-in-time adaptive intervention designed to promote both 6-MP adherence and mHealth engagement. International Registered Report Identifier (IRRID) DERR1-10.2196/32789

BACKGROUND: The objective of this study was to examine prospectively the associations between family functioning at the end of tumor-directed treatment and the health-related quality of life (HRQL) of pediatric brain tumor survivors (PBTS) approximately nine months later. PROCEDURE: Thirty-five PBTS (age 6 to 16) and their mothers completed measures of family functioning and survivor HRQL within five months of completing tumor-directed therapy (baseline) and again approximately nine months later (follow-up). RESULTS: Survivor-rated general family functioning at baseline significantly predicted mother proxy- and self-reported survivor HRQL at follow-up when controlling for survivor HRQL at baseline and relevant demographic and treatment-related variables. CONCLUSIONS: Family functioning is a key factor contributing to survivor HRQL and should be screened throughout the course of tumor-directed treatment. Psychosocial interventions directed toward improving general family functioning may improve survivor well-being following the completion of treatment.

PURPOSE: The purposes of this study are to describe sleep quality and sleep disturbance among caregivers of children in the maintenance phase of acute lymphoblastic leukemia (ALL) and to examine the relationship between sleep quality, child sleep disturbance, and caregiver guilt and worry. METHODS: Caregivers of 68 children with ALL, ages 3 to 12 years old, completed measures of caregiver guilt and worry, caregiver sleep quality, and child’s developmental history and sleep habits. Demographic and treatment correlates of poor caregiver sleep were examined, and caregiver guilt and worry was tested as a moderator between child and caregiver sleep. RESULTS: More than half of caregivers (55.9%) reported clinically significant poor sleep and less than 40% were obtaining adequate sleep durations. Caregiver sleep was significantly related to child age at diagnosis, child sleep, and caregiver guilt and worry. Caregiver guilt and worry did not moderate the relationship between child sleep and caregiver sleep. CONCLUSIONS: Poor sleep is common in caregivers of children with cancer. Further research on the timing of sleep interventions and the most effective intervention targets are needed to maximize caregiver functioning during a child’s cancer treatment. Targeted interventions seeking to improve caregiver sleep should be directed towards caregivers of children diagnosed in early childhood, caregivers of children with poor sleep, and caregivers with high guilt and worry.

BackgroundInformed by the Pediatric Self-Management Model, the present study tested relationships between parent and family functioning, sickle cell disease (SCD) self-management, and health outcomes for children with SCD.Method83 children with SCD and a parent completed baseline data as part of a larger investigation of a family-based, problem-solving intervention for children with SCD (M age = 8.47). Youth and parents completed a measure of child health-related quality of life (HRQOL), and parents completed measures of family efficacy, parenting stress, and SCD self-management. SCD pain episodes and urgent health utilization information over the past year were obtained via medical chart review.ResultsSCD self-management mediated the relationship between parent-reported family efficacy and parent proxy HRQOL, as well as the relationship between parenting stress and child and parent proxy HRQOL. Mediation models were nonsignificant for outcomes beyond HRQOL, including SCD pain episodes and urgent health utilization.ConclusionFostering family efficacy and reducing parenting stress may be meaningful intervention targets for improving SCD self-management and child HRQOL among school-aged children. Although findings were consistent with the Pediatric Self-Management Model in terms of HRQOL, the model was not supported for pain episodes or urgent health utilization, highlighting the need for multi-method, longitudinal research on the SCD self-management behaviors that are linked to preventable health outcomes.

Objective The development of the Transition Readiness Inventory (TRI) item pool for adolescent and young adult childhood cancer survivors is described, aiming to both advance transition research and provide an example of the application of NIH Patient Reported Outcomes Information System methods. Methods Using rigorous measurement development methods including mixed methods, patient and parent versions of the TRI item pool were created based on the Social-ecological Model of Adolescent and young adult Readiness for Transition (SMART). Results Each stage informed development and refinement of the item pool. Content validity ratings and cognitive interviews resulted in 81 content valid items for the patient version and 85 items for the parent version. Conclusions TRI represents the first multi-informant, rigorously developed transition readiness item pool that comprehensively measures the social-ecological components of transition readiness. Discussion includes clinical implications, the application of TRI and the methods to develop the item pool to other populations, and next steps for further validation and refinement.

Author(s): Marsac, Meghan L; Kassam-Adams, Nancy; Delahanty, Douglas L; Ciesla, Jeffrey; Weiss, Danielle; Widaman, Keith F; Barakat, Lamia P | Abstract: ObjectiveEach year millions of children suffer from unintentional injuries that result in poor emotional and physical health. This study examined selected biopsychosocial factors (i.e., child heart rate, peritrauma appraisals, early coping, trauma history) to elucidate their roles in promoting emotional recovery following injury. The study evaluated specific hypotheses that threat appraisals (global and trauma-specific) and coping would predict subsequent posttraumatic stress symptoms (PTSS), that coping would mediate the association between early and later PTSS, and that heart rate would predict PTSS and appraisals would mediate this association.MethodParticipants were 96 children hospitalized for injury and assessed at 3 time points: T1 (within 2 weeks of injury), T2 (6-week follow-up), and T3 (12-week follow-up). Participants completed measures of trauma history and appraisals at T1, coping at T2, and PTSS at T1, T2, and T3. Heart rate was abstracted from medical records. Structural equation modeling was employed to evaluate study hypotheses.ResultsHeart rate was not associated with PTSS or appraisals. Models including trauma history, appraisals, coping, and PTSS were constructed to test other study hypotheses and fit the data well. T1 global and trauma-specific threat appraisals were associated with T1 PTSS; T2 avoidant coping was a significant mediator of the relation between T1 and T3 PTSS.ConclusionFindings confirm a role for appraisals and coping in the development of PTSS over the weeks following pediatric injury. Early appraisals and avoidant coping may be appropriate targets for prevention and early intervention. Future researchers should further explicate the utility of a biopsychosocial framework in predicting PTSS. (PsycINFO Database Record

Improvements in survival rates for youth with chronic physical health conditions have yielded a growing population of adolescents and young adults (AYA) in need of adult-focused medical care (American Academy of Pediatrics, American Academy of Family Physicians, & American College of Physicians, 2011). Although the transfer to adult-focused care is often medically and developmentally indicated, pediatric providers frequently struggle with the transition process—specifically determining when and how to plan for the transfer of care. The transfer of care is often poorly executed, resulting in inappropriate health care utilization (White, 2002), nonadherence to medical treatments (Annunziato et al., 2007), failure to establish a connection with an adult medical provider (Tuchman, Slap, & Britto, 2008), and continued care in the pediatric setting by default (Blum et al., 1993). Consequences of inadequate or inappropriate care due to poor transition planning include onset of secondary disabilities (Williams, 2009) and increased rates of hospitalization (Gurvitz et al., 2007). On the other hand, a well-planned transition has benefits as indicated by patient-reported satisfaction with care, increase in self-management following transfer, and improved empowerment (Tuchman et al., 2008). To improve the transition process, a new clinical algorithm was created (American Academy of Pediatrics et al., 2011) and a related “toolkit” (www.gottransition.org) has been disseminated. Both the algorithm and toolkit emphasize the importance of tracking transition readiness. A review of the literature indicates that transition readiness is best defined as indicators that the AYA and their medical support system (family and medical providers) can begin, continue, and finish the transition process through the discrete event of transfer (Betz & Telfair, 2007; Schwartz et al., 2013; Telfair, Alexander, Loosier, Alleman-Velez, & Simmons, 2004). It involves multiple components, is measurable, and is potentially modifiable before transfer (Schwartz, Tuchman, Hobbie, & Ginsberg, 2011). Thus, it is critical to track and promote transition readiness among AYA patients to prepare them to successfully engage in adult medical care. Supports or interventions can be put into place to improve transition readiness, referred to as transition planning (Schwartz et al., 2011). Despite the clinical algorithm and toolkit intended to enhance the transition process, there is little consensus on the essential components of transition readiness and progress in developing evidence-based assessments for tracking transition readiness has been slow. Extant research has focused on age, skills, and knowledge as components of transition readiness without exploration of broader social-ecological associates such as relationships, socioeconomic factors, and psychosocial factors related to multiple stakeholders in the process (Betz, 2000; Cappelli, MacDonald, & McGrath, 1989). Advancing measurement of transition readiness is essential to better understand intervention targets to enhance the likelihood of engagement in the adult health care system following transfer (Schwartz et al., 2011; 2013). Specifically, evidence-based transition readiness assessments are important for both clinical and research purposes for tracking progress of readiness over time, identifying targets of intervention, assessing outcomes of intervention, and allowing comparisons of transition readiness across cohorts and clinics (Schwartz et al., 2011; 2013). While many transition readiness measures have been developed, most are new, not widely used, and have not been well tested. Furthermore, while other reviews of transition-related measures have recently been published, they have not included clear recommendations for further measurement testing and development (Stinson et al., 2013; Zhang, Ho, & Kennedy, 2014). Thus, the current article provides a systematic review of published measures of transition readiness for AYA with chronic physical health conditions to provide clinicians and researchers guidance on choosing and developing transition readiness measures for their population of interest. Strengths of this systematic review include strict inclusion criteria of published self-described transition readiness measures with evaluable data; descriptions of all the measures, including theoretical background and psychometrics; guidance on choosing measures; and recommendations for future research in transition readiness measure development. Specifically, the goals of this review are to (1) review existing published measures of transition readiness with psychometric data; (2) classify measures using American Psychological Association Division 54 Evidence-Based Assessment (EBA) Task Force criteria (Cohen et al., 2008) and Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines (Moher, Liberati, Tetzlaff, & Altman, 2009); (3) evaluate strengths and weaknesses of the measures; and (4) make recommendations for future research and measurement development for transition readiness.

Children with sickle cell disease (SCD) are at risk for poor health-related quality of life (HRQOL). The current analysis sought to explore parent problem-solving abilities/skills as a moderator between SCD complications and HRQOL to evaluate applicability to pediatric SCD. At baseline, 83 children ages 6–12 years and their primary caregiver completed measures of the child HRQOL. Primary caregivers also completed a measure of social problem-solving. A SCD complications score was computed from medical record review. Parent problem-solving abilities significantly moderated the association of SCD complications with child self-report psychosocial HRQOL (p = .006). SCD complications had a direct effect on parent proxy physical and psychosocial child HRQOL. Enhancing parent problem-solving abilities may be one approach to improve HRQOL for children with high SCD complications; however, modification of parent perceptions of HRQOL may require direct intervention to improve knowledge and skills involved in disease management.

Family-based interventions in pediatric cancer face challenges associated with integrating psychosocial care into a period of intensive treatment and escalating stress. Little research has sought input from parents on the role of interventions delivered shortly after diagnosis. This mixed-methods study obtained parents’ perspectives on the potential role of family-based interventions. Twenty-five parents provided feedback on the structure and timing of psychosocial interventions via focus groups and a questionnaire. Qualitative analyses resulted in three themes that were illustrative of a traumatic stress framework: 1) tension between focusing on child with cancer and addressing other family needs, 2) factors influencing parents’ perception of a shared experience with other parents, and 3) the importance of matching interventions to the trajectory of parent adjustment. Quantitative data indicated that parents preferred intervention within six months of diagnosis, with almost half favoring within two months of diagnosis, and the majority wanted interventions targeted to parents only. Qualitative themes highlight the importance of using a traumatic stress framework to inform the development of family-based interventions for those affected by pediatric cancer.

Children with sickle cell disease (SCD) are at risk for neurocognitive impairment and poor academic achievement, although there is limited research on factors predicting academic achievement in this population. This study explores the relative contribution to academic achievement of a comprehensive set of factors, such as environmental (socioeconomic status), disease-related (stroke, transfusion therapy, adherence), and psychosocial variables (child behavior, child quality of life (QoL)), controlling for intellectual functioning (IQ).Eighty-two children with SCD completed measures assessing IQ and academic achievement, while parents completed questionnaires assessing adherence, child behavior, and child quality of life. Medical chart reviews were conducted to determine disease-related factors.Hierarchical regression analyses indicated that 55% of the variance in academic skills was accounted for by IQ, parent education, chronic transfusion status, and QoL [The findings suggest a significant contribution of factors beyond IQ to academic achievement. Findings allow for identification of children with SCD at risk for academic difficulties for whom psychoeducational interventions may enhance academic achievement.

This article describes a cognitive-behavioral pain management intervention for adolescents with sickle cell disease with particular emphasis on description of components that enhance its cultural sensitivity. To date, 25 participants have been randomized to the pain management intervention. Treatment expectation ratings at baseline and midpoint (after Session 2) and participant feedback regarding interest in, enjoyment of, and helpfulness of the intervention are presented. Preliminary data indicate that most of the participants have been engaged in and have responded well to the intervention. Challenges of the intervention are discussed.

Purpose The goal of this study was to evaluate the relative contribution of treatment intensity, family sociodemographic risk, and family resources to health-related quality of life (QOL) of 102 adolescents in treatment for cancer. Methods Adolescents and parents completed self-report measures of teen QOL, family functioning, and parent-child bonding. Based on parent report of family sociodemographic variables, an additive risk index was computed. A pediatric oncologist rated treatment intensity. Results Simultaneous regression analyses demonstrated the significant contribution of roles in family functioning and quality of parent-child relationship to prediction of psychosocial QOL (parent and teen-reported) as well as parent-reported teen physical QOL over and above the contribution of treatment intensity. Family sociodemographic risk did not contribute to QOL in these regression analyses. In additional analyses, specific diagnosis, types of treatment and individual sociodemographic risk variables were not associated with QOL. Parent and teen ratings of family functioning and quality of life were concordant. Conclusions Family functioning, including quality of parent-child relationship, are central and potentially modifiable resistance factors in teen QOL while under treatment for cancer. Even more important than relying on diagnosis or treatment, screening for roles and relationships early in treatment may be an important aspect of determining risk for poor QOL outcomes.

Background This study aimed to clarify associations between pain, psychological adjustment, and family functioning with health-related quality of life (HRQOL) in a sample of adolescents with sickle cell disease (SCD) utilizing teen- and parent-report. Methods Forty-two adolescents (between the ages of 12 and 18) with SCD and their primary caregivers completed paper-and-pencil measures of pain, teen's psychological adjustment, and HRQOL. In addition, primary caregivers completed a measure of disease-related parenting stress. Medical file review established disease severity. Results Pearson correlations identified significant inverse associations of pain frequency with physical and psychosocial domains of HRQOL as rated by the teen and primary caregiver. Generally, internalizing symptoms (i.e. anxiety and depression) and disease-related parenting stress were also significantly correlated with lower HRQOL. Examination of possible mediator models via a series of regression analyses confirmed that disease-related parenting stress served as a mediator between pain frequency and physical and psychosocial HRQOL. Less consistent were findings for mediation models involving internalizing symptoms. For these, parent-rated teen depression and teen anxiety served as mediators of the association of pain frequency and HRQOL. Conclusion Results are consistent with extant literature that suggests the association of pain and HRQOL and identify concomitant pain variables of internalizing symptoms and family variables as mediators. Efforts to improve HRQOL should aim to address internalizing symptoms associated with pain as well as parenting stress in the context of SCD management.