Perspectives and Experiences of Parents and Adolescents Who Participate in a Pediatric Precision Oncology Program: "When You Feel Helpless, This Kind of Thing Is Very Helpful".

PURPOSE: The SickKids Cancer Sequencing (KiCS) Program, launched in 2016, evaluates the clinical utility of paired tumor/germline Next-Generation Sequencing (NGS) in pediatric oncology patients with hard-to-cure and rare cancers. In anticipation of further widespread adoption of NGS, we aimed to characterize the experiences and perspectives of adolescents and parents of patients who have already undergone NGS evaluation, focusing on the psychosocial impact and personal utility. METHODS: Parents of patients with pediatric cancer and adolescent patients who have participated in KiCS were invited to participate in semistructured interviews. Transcripts were analyzed using an inductive content analytic approach. RESULTS: Of 45 individuals invited, 22 parents and 10 adolescents were interviewed (71% response rate). Prominent psychosocial themes were low distress, relief, and sense of control; some expressed fear of the unknown. In exploring constructs of personal utility, parents highlighted hope for treatment options despite low expectations for results with clinical impact, whereas adolescents articulated altruistic motivations and less hope for personal clinical benefit. Bringing closure and answering the question of why the cancer occurred was a salient theme among both groups. Both parents and adolescents find benefit and clear decisional satisfaction with participation. No participants expressed regret. CONCLUSION: This study suggests that parents and adolescents benefit from NGS evaluation beyond the return of clinically relevant results. Our findings lay the framework for future work evaluating the value of NGS in pediatric precision oncology care through assessment of patient-reported outcomes and experiences. These results also guide provision of pre- and post-test education and support, which will facilitate patient-centered delivery of NGS practices.

The impact of caregiver anxiety/depression symptoms and family functioning on child quality of life during pediatric cancer treatment: From diagnosis to 6 months.

A pediatric cancer diagnosis can have a significant impact on the quality of life (QOL) of the child. Diagnosis and treatment impact caregiver anxiety/depression symptoms and family functioning, and these in turn may influence child QOL. However, there has been limited longitudinal examination of the impact of both caregiver anxiety/depression symptoms and family functioning on youth QOL at specific points during the early diagnosis and treatment period.Ninety-six caregivers of youth (diagnosed with leukemia/lymphoma or a solid tumor) reported on their own anxiety/depression symptoms, family functioning, demographic and medical factors, and on their child's generic and cancer-specific QOL shortly after diagnosis (T1) and 6 months later (T2).Caregiver anxiety/depression symptoms were associated with poorer cancer-specific and generic child QOL within and across time points. Family conflict was associated with youth cancer-related QOL at T1.Attendance to caregiver anxiety/depression symptoms and family functioning, beginning early in the cancer trajectory, is an important aspect of family-centered care. Routine psychosocial screening and triage may help identify and intervene to support both caregiver and child psychosocial well-being.

Pediatric Brain Tumor Survivors' Understanding of Friendships: A Qualitative Analysis of ADOS-2 Interview Responses.

BACKGROUND: Pediatric brain tumor survivors (PBTS) are at risk of experiencing social competence challenges, but only a limited number of studies have used a qualitative approach to understand their social relationships. We examined PBTS responses to social interview questions within the Autism Diagnostic Observation Schedule, 2nd edition (ADOS-2), which includes questions related to their understanding of their own relationships, as well as the construct of friendship more generally. METHODS: Twenty-four PBTS (ages 9-17 years; M = 14.2 years from diagnosis; 50% male; 42% received radiation treatment) completed the ADOS-2. ADOS-2 social interview responses were recorded and transcribed verbatim. Themes were derived using an inductive thematic analysis approach. RESULTS: PBTS reported that they considered trust, acceptance, respect, emotional support, and spending time together to be important aspects of friendships in general. When describing their own social relationships, some PBTS noted a lack of intimacy or closeness, spending time with their friends almost exclusively at school, with structured activities outside of school being an additional basis for friendship. Challenges to their social relationships included loneliness and reliance on family for social support, experiences of teasing and bullying, social skills deficits, and lack of insight into social situations. CONCLUSION: Although PBTS were able to acknowledge many important qualities of friendships in general (e.g., trust, emotional support), these were not necessarily reported in their own friendships. PBTS also appeared to have difficulty identifying whether someone was their friend. These findings offer potential opportunities for supporting PBTS in achieving friendships consistent with their conception of this important relationship.

A qualitative examination of the benefits and challenges of a psychosocial screening intervention in pediatric oncology: "Support comes to us".

BACKGROUND: Pediatric cancer diagnosis and treatment can have detrimental mental health effects on parents (caregivers) and their children/adolescents (youth). Psychosocial screening and intervention have been recognized as standards of care in pediatric oncology. The most effective psychosocial interventions to support those in need post screening have not been determined. AIMS: This qualitative study aimed to investigate the perceived benefits and challenges for caregiver and youth participants in the screening-intervention arm of an Enhanced Psychosocial Screening Intervention (EPSI) pilot study. METHODS: EPSI consists of a psychosocial navigator (PSN) who shares screening results conducted near diagnosis (T1) and monthly for 1 year (T2) with treating teams and families. All 17 caregiver-youth dyads who had completed EPSI were invited to participate in a semi-structured interview. RESULTS: Ten caregivers and nine youth participated. Identified themes were grouped into benefits and challenges of EPSI: feeling supported and cared for (support comes to us regularly, having someone to talk to); and feeling empowered through knowledge of resources and services were perceived as benefits. Caregivers were challenged by feeling overwhelmed, and youth by screening questions perceived as too repetitive. CONCLUSIONS: Regular monthly contacts for a year by the PSN with screening results and recommendations were perceived as beneficial by youth newly diagnosed with cancer and their caregivers who participated in EPSI. Feeling that support came to them and they had someone to talk to was a critical component. While information about psychosocial resources was not always used right away, it did evoke feelings of being empowered.

Sharing psychosocial risk screening information with pediatric oncology healthcare providers: Service utilization and related factors.

BACKGROUND: Psychosocial morbidity in pediatric oncology patients and their caregivers is widely recognized. Although routine systematic psychosocial screening has been proposed as a standard of care, screening is still limited. The present study assessed whether supplying the patient's treating team of healthcare providers with psychosocial risk screening information near diagnosis would increase the rate of documented psychosocial contacts, particularly for patients/families with elevated risk. The effect of demographic and clinical factors was also examined. PROCEDURES: Ninety-three families with a child/youth newly diagnosed with cancer participated. Families were randomly assigned to a care as usual control group (n = 44) or an intervention group (n = 49) where the treating team was provided with a summary of family psychosocial risk, measured by the Psychosocial Assessment Tool (PAT). The PAT was completed by the primary caregiver, who also provided demographic information. The number of psychosocial intervention contacts documented in the medical charts was examined. RESULTS: The rate of psychosocial intervention did not significantly differ between the groups (P > 0.05). The intensity of the child's cancer treatment was found to be the only significant predictor of the number of documented psychosocial intervention contacts (ß = 0.396, P < 0.001). CONCLUSIONS: Clinical factors appear to be more predictive of the rate of psychosocial intervention provided to pediatric oncology patients and their families than informing the treating team of family psychosocial risk. Additional research is required to address the gap between psychosocial risk screening, psychosocial intervention, and family outcomes.

Early trajectory of psychosocial risk in families of children and adolescents newly diagnosed with cancer.

We explored early trajectories of psychosocial risk levels (i.e., Universal, Targeted, or Clinical) in families of children and adolescents newly diagnosed with cancer using the Psychosocial Assessment Tool (PAT) in secondary analysis of data from a randomized trial assessing the effects of psychosocial screening. Families were allocated to an intervention group (IG, PAT summary provided to patient treating team) or a control group (CG, no PAT summary provided to treating team) in two pediatric cancer centers. Primary caregivers (N = 122) of newly diagnosed children and adolescents completed the PAT along with outcome measures for the trial at 2-4 weeks post-diagnosis (T1) and 6 months post-diagnosis (T2). The CG and IG were not significantly different, in terms of PAT risk levels at T1 and T2, but at T1, the PAT total and parent stress scores were higher in the CG (p's < .05). The distribution of families across PAT risk levels did not differ significantly between T1 and T2 (p > .05) with 63% of families remaining within the same PAT risk level at T2. A subgroup of families in the Targeted risk level at T1 moved to the Universal (34%) or Clinical (13%) levels of risk at T2 (p's < .01). Another subgroup with Universal risk at T1 trended to Targeted (28%) or Clinical (2%) at T2. While psychosocial risk remained relatively consistent for the majority of families, a smaller number of families experienced changes in risk level over time. Further investigation of these exploratory trends in psychosocial trajectories is needed to guide psychosocial support during child's cancer treatment.Clinical Trial Registration Number: NCT02788604 (registered with ClinicalTrials.gov).

Pilot randomized psychosocial trial of a screening intervention in pediatric oncology.

OBJECTIVE: Psychosocial screening is a standard of care in pediatric oncology, but there is limited information about how to intervene after screening. This pilot trial aimed to determine feasibility of the novel Enhanced Psychosocial Screening Intervention (EPSI) and explore its preliminary efficacy outcomes. We examined rates of recruitment, retention, intervention acceptability, and monthly distress screening completion, as well as exploratory efficacy outcomes (Patient-Reported Outcomes Measurement Information System: depression, anxiety and fatigue; distress thermometer, pain and sleep). METHODS: Parallel-group randomized pilot trial: Caregiver-youth (10-17 years at enrollment, newly diagnosed with cancer) dyads were randomly allocated to either EPSI or standard care with 1:1 ratio allocation. EPSI consists of having a Psychosocial Navigator who shares screening results conducted near diagnosis and monthly for one year with treating teams and families, and provides recommendations tailored to screening results. RESULTS: Enrollment rate was 54% (38 dyads); retention was 90% and acceptability 86% (caregivers) and 76% (youth). Exploratory symptoms of depression, anxiety, distress and fatigue outcomes consistently improved mainly for caregivers. CONCLUSIONS: Results suggest EPSI is feasible and acceptable and exploratory mental and physical efficacy outcomes are promising for use in a future confirmatory multisite efficacy trial.

Protocol for mapping psychosocial screening to resources in pediatric oncology: a pilot randomized controlled trial.

BACKGROUND: A pediatric cancer diagnosis and its treatment can have a detrimental effect on the mental health of children and their families. Screening to identify psychosocial risk in families has been recognized as a standard of care in pediatric oncology, but there has been limited clinical application of this standard thus far. A significant impediment to the implementation of psychosocial screening is the dearth of information on how to translate psychosocial screening to clinical practice, and specifically, how to follow-up from screening results. This manuscript aims to describe a protocol of a new intervention examining the feasibility and acceptability of mapping via a Psychosocial Navigator (PSN) psychosocial screening results to specific recommendations of resources for families based on measured risk for psychosocial distress and mental health symptoms. METHODS: The pilot randomized control trial (RCT) consists of dyads of youth (10-17 years) newly diagnosed with cancer and their primary caregiver. This RCT includes two arms (intervention and control group), with each group completing measurements near diagnosis and 1 year later. After the initial assessment, dyads in the intervention group receive monthly screening results and recommendations from the study PSN that are tailored to these results. The patient's primary healthcare team (nurse, social worker, oncologist) also receive the risk, distress, and mental health results as well as the recommendations from the PSN. DISCUSSION: This study addresses a significant barrier to the implementation of psychosocial screening in pediatric oncology: specifically, the limited knowledge of how to follow-up from screening results. Findings from this pilot will inform a future definitive RCT to test the effectiveness of the intervention on patient and family mental health outcomes. This project has implications for enhancing clinical care in pediatric oncology, as well as other pediatric populations. STRENGTHS AND LIMITATIONS OF THIS STUDY: This is the first study of screening and follow-up using a psychosocial navigator. This study involves both patient and caregiver report. The small sample size necessitates a future larger study to investigate the effects of intervention. TRIAL REGISTRATION: NCT04132856 , Registered 10 October 2019-retrospectively registered.

"I'm With my People!": Perceived Benefits of Participation in a Group Social Skills Intervention for Children and Adolescent Survivors of Brain Tumors.

BACKGROUND: Children and adolescent survivors of brain tumors may experience impairments in social competence. OBJECTIVE: This qualitative randomized controlled substudy aimed to investigate the outcomes of a social skills intervention group by interviewing these children and adolescents and their caregivers following group participation. INTERVENTIONS/METHODS: Children and adolescents were randomized to the Social Skills Intervention Program or the attention control group. Using purposive sampling, 12 patients (average age, 11.42 years) and 12 caregivers were interviewed following group participation. The Social Skills Intervention Program consists of eight 2-hour manualized sessions delivered weekly; each session was structured around a social skill (eg, making friends, bullying) through arts and crafts and cognitive-behavioral strategies. The sessions in the control group were structured around daily themes (eg, summer activities) doing arts and crafts. Interviews were analyzed using content analysis. RESULTS: Themes unique to the intervention program included improved self-control and self-acceptance, reduced feelings of sadness, and improved problem solving. Themes common to both groups included group bonding over similar experiences, increased social confidence with peers and family, and reduced acting out. CONCLUSIONS: This study uncovered additional unique intervention effects not captured by quantitative measures: improved self-control and problem solving and benefits of the group experience in general. IMPLICATIONS FOR PRACTICE: Findings support the need for group socialization opportunities for children with brain tumors. Nurses can promote socializing opportunities for children and adolescent survivors of brain tumors during and after medical treatment ends to prevent social competence deterioration.

Psychosocial screening and mental health in pediatric cancer: A randomized controlled trial.

OBJECTIVE: Diagnosis and treatment of childhood cancer can impact the mental health of the family. Early psychosocial risk screening may help guide interventions. The primary aim of this study was to evaluate if an intervention (providing psychosocial risk information to the patient's treating team) would result in decreased depression symptoms in caregivers, in general, and relative to initial psychosocial risk. A secondary aim was to examine intervention effects in a small sample of patient and sibling self-reported outcomes. METHODS: We randomly allocated families to the intervention group (IG, treating team received PAT summary) or control group (CG, no summary). One hundred and twenty-two caregivers of children newly diagnosed with cancer completed measures of depression and anxiety and psychosocial risk 2-4 weeks from diagnosis (T1) and 6 months later (T2). Patients and siblings completed self-report measures of depression and anxiety. RESULTS: There was no significant difference in caregiver depression symptoms between the IG and CG at T2. However, in the context of psychosocial risk, caregivers in the IG showed improvement in depression scores compared to CG when risk was high near diagnosis (Ms = 6.68 vs. 9.76, respectively, d = .60). Similar results were found in anxiety scores. Intervention effects with patients and siblings were inconclusive. CONCLUSIONS: Sharing psychosocial risk information with the treating team had measurable impact on mental health outcomes only if caregivers had initial high psychosocial risk. This study contributes to our understanding of mapping psychosocial screening and resources to improve outcomes in families managing childhood cancer. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Healthcare provider utility ratings of a psychosocial screening summary: from diagnosis to 6 months.

BACKGROUND: Psychosocial screening has been proposed as a core standard of care in pediatric oncology. However, there has been limited application of this standard thus far. Understanding healthcare provider (HCP) attitudes towards psychosocial screening is an important element towards furthering implementation initiatives of standard screening practices in pediatric oncology. OBJECTIVE: To compare HCP perceptions of the utility of a psychosocial risk summary by discipline (oncologist, nurse, social worker), risk level (Universal, Targeted, Clinical) derived from the Psychosocial Assessment Tool (PAT), and time (shortly after a child's diagnosis [T1] and 6 months later [T2]). METHOD: All participating HCPs (oncologists, nurses, social workers) were asked to rate how useful they found the psychosocial risk summary using a visual analogue scale (VAS). RESULTS: The psychosocial risk summary was perceived as equally useful across providers (oncologists, nurses, social workers) and PAT risk levels at T1. At T2, the psychosocial risk summary was perceived as more useful by oncologists and nurses than social workers, and summaries indicating elevated risk were perceived as more useful than those indicating low risk. Overall, healthcare providers reported greater utility of psychosocial risk summary near diagnosis compared with 6 months later, largely driven by lower utility ratings reported by social workers at T2. CONCLUSION: Understanding perceived utility and factors affecting perceived utility is a key component to designing effective implementation strategies for systematic psychosocial screening. Active engagement of HCPs in the screening process is critical in improving implementation of psychosocial screening throughout pediatric cancer treatment.

Quality of life in pediatric oncology patients, caregivers and siblings after psychosocial screening: a randomized controlled trial.

OBJECTIVE: We evaluated whether conducting psychosocial screening using a validated measure (the Psychosocial Assessment Tool, PAT) and providing a summary of PAT results to the patient's treating team improves quality of life (QOL) in newly diagnosed patients with cancer, their caregivers and siblings, in general, and in relation to the initial family psychosocial risk. METHODS: Families were randomly allocated to an intervention (IG, treating team received PAT summary describing low, medium, or high psychosocial risk) or control group (CG, no summary provided to treating team) in two Canadian pediatric cancer centers. Caregivers (N = 122) of children newly diagnosed with cancer, patients (n = 36), and siblings (n = 25) completed QOL assessments at 2-4 weeks (T1) and 6 months post-diagnosis (T2). Caregivers also completed PAT and proxy QOL for patient and sibling. RESULTS: In general, patient-proxy total QOL improved in IG compared to CG over time but only for high psychosocial risk patients (p < .05). Patient proxy cancer-related QOL improved over time regardless of group allocation; caregiver QOL also improved over time (ps < .05). CONCLUSION: This study demonstrated the benefits of psychosocial screening results only on proxy patient QOL outcomes with high psychosocial risk near diagnosis. Evaluating QOL benefits in pediatric oncology patients is critical for establishing the clinical value of psychosocial screening. CLINICAL TRIAL REGISTRATION NUMBER: NCT02788604 (REGISTERED WITH HTTPS://CLINICALTRIALS.GOV/CT2/SHOW/NCT02788604 ).

Psychosocial difficulties identified by health care providers as they predict pain-related quality of life in children with cancer.

This study examined the predictive validity of the Psychosocial Care Checklist (PCCL), a psychosocial screener completed by a pediatric cancer health care provider (HCP), on child pain-related and nausea-related quality of life (QOL), and whether these associations are moderated by family psychosocial risk (Psychosocial Assessment Tool, PAT). Caregivers (N = 122) of children newly diagnosed with cancer and 62 HCPs (11 social workers, 17 nurses, 34 oncologists) at two Canadian sites participated. Near diagnosis (T1) and six months later (T2), caregivers reported on child QOL and family psychosocial risk, which was categorized as universal (typical distress), targeted (targetable distress), or clinical (severe distress). HCPs completed the PCCL at T1 and T2. HCP identification of more psychosocial problems in PCCL at T1 predicted reduced child pain-related (but not nausea-related) QOL at T2 among children with universal risk. The PCCL scores did not predict pain-related QOL in families with higher psychosocial needs (i.e., targeted and clinical). HCPs may have difficulty identifying psychosocial problems among families with high risk in a manner that predicts child's pain-related QOL. A hybrid model of psychosocial screening that includes both HCP and caregiver reports is recommended to best match family problems and interventions to improve QOL.

Perceived benefits of and barriers to psychosocial risk screening in pediatric oncology by health care providers.

BACKGROUND: Although systematic psychosocial screening has been established as a standard of psychosocial care in pediatric oncology, this is not yet widely implemented in clinical practice. Limited information is available regarding the reasons behind this. In this study, we investigated perceptions of psychosocial screening by health care providers (HCPs) involved in pediatric cancer care. METHODS: Using purposeful sampling, 26 HCPs (11 oncologists, 8 nurses, and 7 social workers) from a large North American pediatric cancer center participated in semistructured interviews. Interviews were recorded and transcribed verbatim. Themes were then derived using content analysis. RESULTS: The themes were organized into perceived benefits of and barriers to psychosocial risk screening, and practical issues regarding implementation. Perceived benefits of screening included obtaining concise documentation of family psychosocial risk, identifying psychosocial factors important to medical treatment, starting a conversation, and triaging patients to psychosocial services. Barriers included perceived limited institutional support, commitment, and resources for psychosocial services, limited knowledge and appreciation of existing evidence-based validated tools, concerns about diverse family cultural backgrounds regarding psychosocial issues and language proficiency, and HCPs' personal values regarding psychosocial screening. Finally, practical issues of implementation including training in psychosocial risk screening, when and how to screen were discussed. CONCLUSIONS: These findings highlight the importance of addressing HCPs' perceptions of benefits, barriers, and practical issues regarding implementing psychosocial risk screening.

Depression and Quality of Life in Siblings of Children With Cancer After Group Intervention Participation: A Randomized Control Trial.

Objective: The objective of this study was to (1) assess the effects of a group intervention called Siblings Coping Together on siblings' psychosocial adjustment compared with controls; (2) explore the potential moderating effect of siblings' gender; and (3) investigate whether the intervention was more effective for siblings with more depressive symptoms at baseline. Methods: This was a repeated measure, parallel randomized controlled trial (RCT) with two groups. Seventy-five healthy siblings (7-16 years old, 41 males) participated. Both groups had 8 weekly 2-hr sessions. Intervention sessions had psychoeducational, social, and therapeutic problem-solving goals taught through games and crafts (n = 41); controls (n = 34) had games and crafts only. Self-reported symptoms of depression (Children's Depression Inventory, CDI) and self- and proxy-reported quality of life (QOL) (Pediatric Quality of Life Inventory, PedsQL) were obtained at baseline, postintervention, and 3 months later. Multivariable analyses with a mixed effects model were performed. Results: No significant main group effect or group × time interactions were found for any of the scales assessed. Significant improvement over time was found for total CDI (p < .01) and proxy-reported PedsQL total (p < .001) in both groups, which may have been attributable to the passage of time. Conclusions: No sufficient evidence was obtained for the efficacy of the intervention in the current study. Future research may examine conducting a larger RCT comparing sibling support group to no treatment control group.

"It's Just for Us!" Perceived Benefits of Participation in a Group Intervention for Siblings of Children With Cancer.

Objective: This qualitative substudy aimed to investigate the outcomes of sibling group interventions from the perspective of siblings of children with cancer and their caregivers. Method: Siblings were randomized to receive the Siblings Coping Together intervention (SibCT) or attention control (CG). In all, 30 participants, 18 siblings (average age = 11.89 years, 9 CG and 9 SibCT) and 12 caregivers (4 CG and 8 SibCT), were interviewed following group participation. SibCT consists of eight 2-hr manualized sessions delivered weekly; in each session, it combines arts and crafts and cognitive-behavioral strategies structured around a specific theme (family or school). The CG is structured only around arts and crafts. Interviews were analyzed using content analysis. Results: Themes common to both groups included the following: having a group just for siblings, improving family relationships, and feeling reassured of parental role. Themes unique to the SibCT group included the following: learning program targets, increasing self-confidence, feeling less different, and connecting caregivers and siblings through homework. Themes unique to the control group included the following: being a good helper and being in the hospital for positive reasons. Conclusion: This study uncovered additional intervention effects not captured in quantitative measures. Whereas benefits were noted in both groups and speak to the importance of support for siblings in general, positive personal and relational changes unique to siblings in the SibCT group and their caregivers support the importance of specific interventions focused on problem-solving siblings' issues.

A randomized controlled trial of a group intervention for siblings of children with cancer: Changes in symptoms of anxiety in siblings and caregivers.

OBJECTIVE: This study assessed the effects of a group intervention-Siblings Coping Together (SibCT)-on siblings' and caregivers' anxiety symptoms compared to controls, and potential moderators. METHODS: Seventy healthy siblings of children on or off treatment (7-16 y old, 41 males) participated in a randomized controlled trial (RCT) with 2 arms/groups: SibCT (n = 41) and an attention control (CG) (n = 34). Both groups had eight 2-hour weekly sessions. EG followed SibCT's educational, social, and problem-solving activities. CG had planned games and crafts. Siblings and caregivers self-reported on anxiety symptoms at baseline, intervention end, and 3 months later. Multivariable mixed model analyses examined the intervention effect over time, and potential moderators (gender, on/off ill child's treatment). RESULTS: No main effects of group or time were found in sibling scores. A group × gender interaction (P < .05) indicated that in the intervention group female siblings reported less total anxiety symptoms than male siblings, with no significant gender differences in the control group. Caregivers' total anxiety symptoms declined over time (P < .02). A group × on/off treatment interaction in physiological/panic subscale (P < .03) indicated that when ill child was on treatment, caregivers of siblings in SibCT reported less anxiety compared with caregivers of CG. CONCLUSIONS: There was no clear SibCT intervention effect. SibCT may benefit female siblings, and caregivers whose ill child is on active treatment. Contextual factors (gender) seem to influence psychosocial intervention in this population.

A randomized control intervention trial to improve social skills and quality of life in pediatric brain tumor survivors.

BACKGROUND: To determine if a group social skills intervention program improves social competence and quality of life (QOL) in pediatric brain tumor survivors (PBTS). METHODS: We conducted a randomized control trial in which PBTS (8-16 years old, off therapy for over 3 months) were allocated to receive social skills training (eg, cooperation, assertion, using social cognitive problem solving strategies, role playing, games, and arts and crafts) in 8 weekly 2-hour sessions, or an attention placebo control (games and arts and crafts only). Outcomes were self-reported, proxy-reported (caregiver), and teacher-reported using the Social Skills Rating System (SSRS), to measure social competence, and the Pediatric Quality of Life (PedsQL4.0, generic) to measure QOL at baseline, after intervention, and at 6 months follow-up. At baseline, SSRS were stratified into low and high scores and included as a covariate in the analysis. RESULTS: Compared to controls (n = 48), PBTS in the intervention group (n = 43) reported significantly better total and empathy SSRS scores, with improvements persisting at follow-up. The PBTS in the intervention group who had low scores at baseline reported the greatest improvements. Proxy and teacher reports showed no intervention effect. CONCLUSIONS: Participating in group social skills intervention can improve self-reported social competence that persisted to follow up. The PBTS should be given the opportunity to participate in social skills groups to improve social competence.

Determinants of social competence in pediatric brain tumor survivors who participated in an intervention study.

PURPOSE: This prospective study describes disease/treatment, personal characteristics, and social/family contextual variables as risk and resilience factors that predict social competence in pediatric brain tumor survivors (PBTS). METHODS: Ninety-one PBTS (51% male, mean age 11.21 years, off-treatment, attending a regular classroom >50% of the time) participated. PBTS and their primary caregivers (proxy) completed the Social Skills Rating System (SSRS) to assess social competence at baseline, 2, and 8 months follow-up. At baseline, medical information (e.g., tumor type and location, cranial irradiation therapy (CIT)), personal characteristics (e.g., child's age and gender, intelligence, executive function, attention, and memory), and social/family factors (family income and ethnicity) were obtained. RESULTS: Using mixed model multivariable analyses with a longitudinal component, tumor type (medulloblastoma) (p < 0.01) and poor executive function, specifically, emotional control, were the best predictors of low total and assertion self-reported SSRS scores (p < 0.02). Receiving CIT was associated with low proxy-reported assertion (p = 0.035), and cooperation score (p = 0.02). Poor emotional control was associated with low proxy-reported total (p = 0.032), assertion (p = 0.023), and self-control scores (p = 0.007). Being non-White was associated with low proxy-reported total (p = 0.016), self-control (p = 0.040), responsibility (p = 0.035), and cooperation scores (p = 0.002). There were no significant changes over time. CONCLUSIONS: This study supports a multifactorial model of insult and non-insult factors (medical, personal, and social context) as determinants of social competence in PBTS. Data from both informants identify determinants of social competence. These factors need to be considered in future interventions to help children better improve their social competence.

Determinants of quality of life outcomes for survivors of pediatric brain tumors.

INTRODUCTION: To describe the quality of life (QOL) of pediatric brain tumor survivors (PBTSs) prospectively and to identify potential medical, personal and family contextual factors associated with QOL. METHODS: Ninety-one PBTSs (8-16 years) who were off treatment and attending a regular classroom participated. Self- and caregiver-proxy-reported on QOL at baseline, 2 and 8 months. At baseline, cognitive, executive function, attention and memory, medical and demographics information were attained. RESULTS: Significant improvements over time in PBTS's emotional QOL were self- and proxy-reported (P < 0.01) and global QOL proxy-reported (P = 0.04). Receiving cranial irradiation therapy (CIT) and poor behavioral regulation predicted poor global QOL scores reported by both informants (P < 0.017). Poor behavioral regulation also predicted poor self-reported school functioning, and poor proxy-reported emotional and social QOL (P < 0.037). Boys reported better emotional QOL (P = 0.029), and PBTSs over 11 years old were reported to have better emotion and school-related QOL. Finally, being non-White and having low income predicted poor self-reported global and emotional QOL (P = 0.041). CONCLUSIONS: Receiving CIT, having poor behavioral regulation, being a female, under 11 years old and coming from low-income, non-White families place PBTSs at risk for poor QOL.