Social participation of school-aged survivors of pediatric brain tumors: A daily diary report.

BACKGROUND: Difficulties with social functioning are common among survivors of pediatric brain tumors. Social participation is an understudied measure of social functioning that is associated with emotional health across the lifespan. This paper uses a diary method to assess the social participation of survivors of pediatric brain tumors in middle childhood. PROCEDURE: Survivors of pediatric brain tumors (N = 47; age 10.6 ± 1.4 years; 51.1% male, 89.4% White) who were 5.3 (SD = 2.4, range: 2-9.9) years post therapy completed a daily diary assessment of social interaction (5-7 days) and an objective measure of facial affect recognition. The participant's caregiver completed the NIH Toolbox Emotion Measures and a background information questionnaire. RESULTS: Overall, frequency and quality of reported social interactions were low for survivors, with a large subset of survivors (n = 16, 34%) endorsing fewer than 10 social interactions over the course of a typical school week, and almost half of parents (48.9%) reporting that their child participates in zero social activities outside of school during a typical week. Participants engaged in more positive social participation exhibited stronger social skills (facial affect recognition (F(2,44)  = 4.85, p < .05). CONCLUSIONS: School-aged survivors of pediatric brain tumors seemed to be infrequently engaged in social participation and quality interaction with peers. More specifically, the interactions most commonly reported on the diary assessment are not indicative of friendship development and maintenance. Survivors of pediatric brain tumors would likely benefit from interventions designed to increase quality time spent with peers.

Proton therapy and limited surgery for paediatric and adolescent patients with craniopharyngioma (RT2CR): a single-arm, phase 2 study.

BACKGROUND: Compared with photon therapy, proton therapy reduces exposure of normal brain tissue in patients with craniopharyngioma, which might reduce cognitive deficits associated with radiotherapy. Because there are known physical differences between the two methods of radiotherapy, we aimed to estimate progression-free survival and overall survival distributions for paediatric and adolescent patients with craniopharyngioma treated with limited surgery and proton therapy, while monitoring for excessive CNS toxicity. METHODS: In this single-arm, phase 2 study, patients with craniopharyngioma at St Jude Children's Research Hospital (Memphis TN, USA) and University of Florida Health Proton Therapy Institute (Jacksonville, FL, USA) were recruited. Patients were eligible if they were aged 0-21 years at the time of enrolment and had not been treated with previous radiotherapeutic or intracystic therapies. Eligible patients were treated using passively scattered proton beams, 54 Gy (relative biological effect), and a 0·5 cm clinical target volume margin. Surgical treatment was individualised before proton therapy and included no surgery, single procedures with catheter and Ommaya reservoir placement through a burr hole or craniotomy, endoscopic resection, trans-sphenoidal resection, craniotomy, or multiple procedure types. After completing treatment, patients were evaluated clinically and by neuroimaging for tumour progression and evidence of necrosis, vasculopathy, permanent neurological deficits, vision loss, and endocrinopathy. Neurocognitive tests were administered at baseline and once a year for 5 years. Outcomes were compared with a historical cohort treated with surgery and photon therapy. The coprimary endpoints were progression-free survival and overall survival. Progression was defined as an increase in tumour dimensions on successive imaging evaluations more than 2 years after treatment. Survival and safety were also assessed in all patients who received photon therapy and limited surgery. This study is registered with ClinicalTrials.gov, NCT01419067. FINDINGS: Between Aug 22, 2011, and Jan 19, 2016, 94 patients were enrolled and treated with surgery and proton therapy, of whom 49 (52%) were female, 45 (48%) were male, 62 (66%) were White, 16 (17%) were Black, two (2%) were Asian, and 14 (15%) were other races, and median age was 9·39 years (IQR 6·39-13·38) at the time of radiotherapy. As of data cutoff (Feb 2, 2022), median follow-up was 7·52 years (IQR 6·28-8·53) for patients who did not have progression and 7·62 years (IQR 6·48-8·54) for the full cohort of 94 patients. 3-year progression-free survival was 96·8% (95% CI 90·4-99·0; p=0·89), with progression occurring in three of 94 patients. No deaths occurred at 3 years, such that overall survival was 100%. At 5 years, necrosis had occurred in two (2%) of 94 patients, severe vasculopathy in four (4%), and permanent neurological conditions in three (3%); decline in vision from normal to abnormal occurred in four (7%) of 54 patients with normal vision at baseline. The most common grade 3-4 adverse events were headache (six [6%] of 94 patients), seizure (five [5%]), and vascular disorders (six [6%]). No deaths occurred as of data cutoff. INTERPRETATION: Proton therapy did not improve survival outcomes in paediatric and adolescent patients with craniopharyngioma compared with a historical cohort, and severe complication rates were similar. However, cognitive outcomes with proton therapy were improved over photon therapy. Children and adolescents treated for craniopharyngioma using limited surgery and post-operative proton therapy have a high rate of tumour control and low rate of severe complications. The outcomes achieved with this treatment represent a new benchmark to which other regimens can be compared. FUNDING: American Lebanese Syrian Associated Charities, American Cancer Society, the US National Cancer Institute, and Research to Prevent Blindness.

Promoting Completion of Cranial Radiation Therapy Without Sedation in Young Patients With Brain Tumors: A Case Series Illustrating Flexible Application of Empirically Supported Intervention.

Repeated anesthesia poses risks to patients but is often utilized to immobilize young children undergoing cranial radiation therapy for brain tumors. To enable young patients to remain still during cranial radiation therapy and thereby avoid sedation, medical and psychosocial clinicians can use behavioral and other supportive interventions. This case series illustrates the utility of behavioral training for motion control in 3 children 6 years old or younger who were treated for brain tumors. We demonstrate the efficacy of flexible, individualized intervention approaches to accommodate patients with brain tumors in the context of emotional dysregulation, significant communication barriers, and profound sensory deficits.

Radiotherapy alone for pediatric patients with craniopharyngioma.

PURPOSE: Radiotherapy alone, without tumor-directed surgery, may be appropriate for selected patients with craniopharyngioma reducing the risks associated with neurosurgery. Understanding outcomes for patients with craniopharyngioma treated with radiotherapy alone will further refine patient selection and treatment options. METHODS: Since 2002, 13 children, adolescents and young adults, with craniopharyngioma were treated with radiotherapy alone and followed for disease control and functional outcomes at a single institution. The median age at treatment was 13 years (range, 3-21 years). All patients received 54 Gy/54 Gy(RBE) in 30 fractions. Five patients were treated with intensity-modulated photon therapy, four with passively scattered proton therapy, and four with intensity-modulated proton therapy. RESULTS: With a median follow-up of 5 years (range 3 months-14 years), all patients were alive. One experienced tumor progression 8.5 years after treatment. No significant changes in vision, hearing or neurologic function attributed to radiotherapy. Hormone deficiencies and body mass index were within the expected range at baseline and 5 years after treatment. There was no evidence of cognitive decline based on assessment of IQ, memory and attention. Unexpected complications included single cases of out-of-field malignancy, white matter changes, large vessel narrowing, and pontine capillary telangiectasia. Six patients had sphenoid bone abnormalities on follow-up imaging attributed to radiotherapy. CONCLUSION: Radiotherapy alone is an important treatment option to consider when radical resection is contraindicated, or surgical intervention is not required to alleviate symptoms. Disease control and functional outcomes are excellent after radiation therapy alone in appropriately selected patients.

The toll of transition: Caregiver perceptions of family adjustment during the transition off pediatric cancer therapy.

OBJECTIVE: The role of transition-focused psychology appointments in managing the transition off therapy is unclear. The objective of this research was to explore caregiver perceived familial distress and the role of psychology in preparing families for transition. METHODS: Fifty-seven caregivers of youth, who finished treatment, completed an online questionnaire through a quality improvement project on experiences of families at transition. Twenty-two percent of caregivers had children who completed a transition-focused psychology consult and 63% completed a cognitive assessment at transition. Retrospective analyses were conducted assessing the association of psychology visits on caregiver perceptions of being informed of and prepared to manage transition-related challenges. RESULTS: Most caregivers reported experiencing adjustment concerns for family members. Caregivers of children completing a transition-focused psychology consult or cognitive assessment reported feeling more informed and greater preparedness to manage difficulties. Although decreased distress was not associated with the visit, those who felt more informed and prepared reported lower distress. CONCLUSIONS: Caregivers perceive transitioning off therapy as stressful for their family, though they experience decreased familial distress when informed of and prepared to manage transition-related challenges. These findings highlight the importance of psychosocial support at transition.

How I approach: Defining the scope of psychosocial care across disciplines in pediatric hematology-oncology.

To provide the standard of psychosocial care for children with cancer and hematological disorders and their families, multidisciplinary teams must clearly define their scope and collaborate in ways that optimize the quality and efficiency of care. A new organizational structure was leveraged to delineate roles and scope for each psychosocial discipline at our institution. We developed a document, the scope of psychosocial care (SPC), that serves as a platform for making patient care decisions and provides opportunities for the reevaluation of programming. Herein, we present the process and outcome of the SPC and make recommendations for identifying roles in pediatric psychosocial hematology-oncology.

Virtual Group Activities as a New Platform for Socialization in Children With Pediatric Cancer: A Case Series From the COVID-19 Pandemic.

Socialization with peers is essential for development yet reduced when children and adolescents are undergoing cancer treatment. Providing opportunity for social experiences is a key role for providers working in the pediatric oncology setting. Traditional in-person socialization activities were significantly impacted by coronavirus disease-2019 restrictions, and psychosocial providers were forced to adapt their practice. This case series illustrates four unique scenarios that highlight virtual social interactions as both feasible and beneficial. While virtual socialization groups were intended to be temporary, the experiences described suggest that ongoing video-based options for some socialization activities are likely prudent for some pediatric populations.

Social Problem Solving in Survivors of Pediatric Brain Tumor.

OBJECTIVES: Psychosocial late effects among survivors of pediatric brain tumors are common. For school-aged survivors, social skills deficits and isolation present a particular challenge. Social problem-solving is a social skill that is an important determinant of social outcomes and may yield a potential target for intervention. METHODS: School-aged youth (N = 65) 8-12 years of age (10.59 ± 1.36 years; 55.4% female, 86.2% white) who were 5.23 (SD = 2.44, range 2-10.9) years post-treatment for a brain tumor completed the Attributions and Coping Questionnaire, a measure of social problem-solving that uses vignettes to assess attribution of intent, subsequent emotional response, and imagined behavioral response to an interpersonal problem. Youth also completed self-reports of social functioning (PROMIS Peer Relationships, Self-Perception Profile). A caregiver completed additional measures of child social functioning (NIH Toolbox-Emotion Measures). RESULTS: Survivors attributed unpleasant situations to accidental causes (neutral attribution) and responded in ways that prioritized the friendship (appeasement) or relied on adult intervention. Self-reported social functioning was higher among those who were less likely to avoid challenging social problem-solving situations. CONCLUSIONS: Findings identified characteristic social problem-solving approaches among survivors, including a tendency to attribute ambiguous situations to accidental causes and to request adult assistance and/or maintain social relationships. This may indicate a possible avenue for intervention, with a focus on increasing survivors' understanding of the causes of potentially negative peer interactions and reducing their reliance on adults.

Early Cognitive and Adaptive Functioning of Clinically Referred Infants and Toddlers with Cancer.

Many children with cancer are diagnosed during infancy and toddlerhood (< 3 years of age), potentially resulting in disrupted and/or missed developmental opportunities. Our objective was to describe the functioning of infants and toddlers with cancer who were clinically referred for evaluation at a hospital-based psychology clinic. Data from 29 very young children with cancer (Mage = 23.62 ± 6.6 months; 55.2% male) who completed clinically referred assessments from 2010 to 2015 were abstracted. Children were 11.3 months post-diagnosis (SD = 7.77, range 1-29 months) with just over half off-therapy at the time of assessment (55.2%). Overall, developmental functioning was significantly below expectations [t(22) = - 8.99, p < .001]. Adaptive functioning [t(25) = - 6.41, p < .001] was also significantly below expectations. Infants and toddlers with cancer appear to be at significant risk for weaknesses in early cognitive and adaptive functioning. The margin of deficits found in this study warrant the need for further investigation and consideration of this young population to ensure optimal functional development.

Speaking genomics to parents offered germline testing for cancer predisposition: Use of a 2-visit consent model.

BACKGROUND: Patients with cancer are increasingly offered genomic sequencing, including germline testing for cancer predisposition or other disorders. Such testing is unfamiliar to patients and families, and clear communication is needed to introduce genomic concepts and convey risk and benefit information. METHODS: Parents of children with cancer were offered the opportunity to have their children's tumor and germline examined with clinical genomic sequencing. Families were introduced to the study with a 2-visit informed consent model. Baseline genetic knowledge and self-reported literacy/numeracy were collected before a study introduction visit, during which basic concepts related to genomic sequencing were discussed. Information was reinforced during a second visit, during which informed consent was obtained and a posttest was administered. RESULTS: As reflected by the percentage of correct answers on the pretest and posttest assessments, this model increased genetic knowledge by 11.1% (from 77.8% to 88.9%; P < .0001) in 121 parents participating in both the study introduction and consent visits. The percentage of parents correctly identifying the meaning of somatic and germline mutations increased significantly (from 18% to 59% [somatic] and from 31% to 64% [germline]; P < .0001). Nevertheless, these concepts remained unfamiliar to one-third of the parents. No relation was identified between the change in the overall percentage of correct answers and self-reported literacy, numeracy, or demographics. CONCLUSIONS: The use of a 2-visit communication model improved knowledge of concepts relevant to genomic sequencing, particularly differences between somatic and germline testing; however, these areas remained confusing to many participants, and reinforcement may be necessary to achieve complete understanding.

Integrated Psychological Services in Pediatric Oncology: Caregiver Perspectives at Diagnosis.

BACKGROUND/OBJECTIVES: Pediatric oncology patients and families are at risk for increased distress at diagnosis. The New Oncology Program in Psychology (NOPP) aligns psychological care with the established standards of care at diagnosis. This project aimed to evaluate NOPP and understand the differences between caregivers' perceptions of feeling informed and prepared to navigate psychosocial concerns for those who did and did not receive psychological services at diagnosis. METHODS: A survey was administered via a virtual platform. Frequency analyses summarize caregiver experiences and concerns. Mann-Whitney U tests assess the differences in caregiver knowledge and preparedness between caregivers who did and did not receive psychological services. RESULTS: Caregivers reported difficult emotions at diagnosis and expressed concern for the impact of diagnosis and treatment across broad domains of patient functioning. Caregivers of patients who received psychology consultation felt more informed about difficult emotions and how these may change over time. They felt more prepared and equipped with strategies to manage difficult emotions. Caregivers of patients who completed a cognitive assessment also felt more informed and prepared regarding the potential effects of the diagnosis and treatment on patient cognitive/academic functioning. CONCLUSIONS: Psychological services were associated with caregivers' positive perceptions surrounding the management of difficult emotions and with their knowledge regarding the cognitive/academic impact. The results inform the ongoing modification of NOPP.

A content analysis of parents' reflections on pathogenic and uncertain pediatric oncology germline sequencing results.

Germline genomic sequencing is increasingly integrated into pediatric cancer care, with pathogenic cancer-predisposing variants identified among 5-18% of affected children and variants of uncertain significance (VUS) in up to 70%. Given the potential medical implications for children and their families, parents' psychosocial responses to learning results are important to understand. Parents of children with cancer who learned their children's germline pathogenic or VUS results following paired tumor and germline genomic sequencing described their cognitive and affective responses to results in an open-ended write-in question after disclosure (M = 10 months post-disclosure; range = 1-28). Responses were coded and categorized using content analysis, then compared across results using chi-square and Fisher's exact test. Parents of children with pathogenic (n = 9), VUS (n = 52), and pathogenic plus VUS results (n = 9) described negative emotions, positive reactions, mixed emotions (i.e., positive and negative emotions), and neutral reactions. Negative emotions were described significantly more frequently with pathogenic results than VUS only (χ2 = 5.19; p = .02), with peace of mind and empowerment only described for those with VUS. Parents also described approach(es) to coping (e.g., faith, plan of action) and reactions specific to the uncertainty of VUS (e.g., disappointment at no explanation for cancer etiology). A subset with VUS described decreasing worry/distress with increased understanding of results, whereas others displayed misconceptions regarding VUS. Screening for emotional adjustment is warranted for parents of children with cancer receiving pathogenic germline results, and screening for understanding is warranted with VUS. Findings highlight the importance of pre-and posttest genetic counseling.

Concordance of parent proxy report and child self-report of posttraumatic stress in children with cancer and healthy children: influence of parental posttraumatic stress.

OBJECTIVE: This study examined the relationships between parental posttraumatic stress symptoms (PTSS), child PTSS, and parent-child concordance for child PTSS. METHOD: Participants were children with cancer (n = 199), and healthy children (n = 108) and their parents. Children self-reported on PTSS and parents completed measures of child and parent PTSS. RESULTS: In the cancer group, child and parent reports of child PTSS were significantly correlated with no mean differences between reporters. In contrast, correlations were non-significant in the control group, and parents reported significantly lower levels of child PTSS than children. Increased parental PTSS was associated with better concordance in the cancer group but not in the control group. In fact, in the cancer group, parent-child concordance was strongest at the highest level of parental PTSS. CONCLUSIONS: Parents of children with cancer were found to be accurate reporters of their children's distress, even with high levels of reported personal distress. In contrast, parents of healthy children appear primarily influenced by personal distress when reporting child PTSS. Although multiple informant assessments are always desirable, it appears that utilization of a single informant may be reasonable in the cancer setting when access to informants is limited.

Pediatric Craniopharyngioma: The Effect of Visual Deficits and Hormone Deficiencies on Long-Term Cognitive Outcomes After Conformal Photon Radiation Therapy.

PURPOSE: Pediatric patients with craniopharyngioma risk cognitive deficits when treated with radiation therapy. We investigated cognitive outcomes after conformal photon radiation therapy (CRT) and the effect of visual deficits and hormone deficiencies. METHODS AND MATERIALS: One hundred one pediatric patients were enrolled on a single institutional protocol beginning in 1998 (n = 76) or followed a similar nonprotocol treatment plan (n = 25). CRT (54 Gy) was administered using a 1.0- or 0.5-cm clinical target volume margin. Median age at CRT was 9.50 years (range, 3.20-17.63 years). Patients were followed for 10 years with assessment of hearing, vision, hormone deficiencies, and cognitive performance. RESULTS: Intellectual functioning (intelligence quotient) was significantly lower in children treated at a younger age and those who received higher doses to temporal lobes and hippocampi. Black race (-17.77 points, P = .002) and cerebrospinal fluid shunting (-11.52 points, P = .0068) were associated with lower baseline intelligence quotient. Reading scores were lower over time in models incorporating age, shunt, and dose to specific brain structures. Patients treated for growth hormone deficiency within 12 months of CRT had better intelligence and attention outcomes. Among patients with normal baseline vision, the 10-year cumulative incidence of change in visual acuity was 4.00% ± 2.82% and in visual field 10.42% ± 4.48%. Reading scores decreased after treatment (0.7873 points/y, P = .0451) in those with impaired baseline vision. CONCLUSIONS: Cognitive outcomes are selectively affected by dose to brain subvolumes, comorbidities of visual deficits, and treatment of endocrinopathy in pediatric craniopharyngioma. Improved treatment selection, normal tissue sparing methods of irradiation, and posttreatment management of endocrinopathy should be considered.

Exploring the interagency collaboration between a pediatric oncology health care setting and community schools.

Globally, approximately 400,000 youth are diagnosed with pediatric cancer each year. Treatment-related side effects, psychosocial challenges, and frequent school absences may adversely impact learning and the education experience among these youth. Efforts to enhance interagency collaboration between health care settings and community schools are imperative to facilitate school reintegration. The Standards for the Psychosocial Care of Children with Cancer and Their Families outline specific guidelines related to the continuity of education for students impacted by pediatric cancer. In particular, the Academic Continuity and School Reentry Support and Monitoring and Assessment of Neuropsychological Outcomes standards of care highlighted within this article align with extant programmatic efforts for transitioning hospitalized school-aged children back into community schools. This article aims to describe systematic programmatic efforts within hospital-based psychosocial programs that are consistent with the Standards for the Psychosocial Care of Children with Cancer and Their Families, as well as interagency collaboration with community schools to support student-centered education for youth impacted by pediatric cancer. Resources for school psychologists, teachers, hospital-based programs, and others involved in student-centered education for pediatric cancer patients and survivors are presented. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Parent Quality of Life After Disclosure of Pediatric Oncology Germline Sequencing Results.

PURPOSE: To characterize parents' quality of life (QoL) after germline genomic sequencing for their children with cancer. METHODS: Participants were n = 104 parents of children with cancer enrolled in a prospective study of clinical tumor and germline genomic sequencing. Parents completed surveys at study consent (T0), before disclosure of their child's germline results (T1), and again ≥5 weeks after results disclosure (T2). Bivariate associations with QoL were examined, followed by a multivariable regression model predicting parents' psychological distress. RESULTS: At T2, parental distress significantly differed by their children's germline result type (positive, uncertain, negative; P = .038), parent relationship status (P = .04), predisclosure genetics knowledge (P = .006), and predisclosure worry about sequencing (P < .001). Specifically, parents of children with positive (ie, pathogenic or likely pathogenic) results experienced greater distress than those of children with negative results (P = .029), as did parents who were single, more knowledgeable about genetics, and with greater worry. In the adjusted regression model, a positive germline result remained significantly associated with parents' lower QoL at T2 follow-up (F [4,92] = 9.95; P < .001; R2 = .30; ß = .19; P = .031). CONCLUSION: Germline genomic sequencing for children with cancer is associated with distress among parents when revealing an underlying cancer predisposition among their affected children. Genetic education and counseling before and after germline sequencing may help attenuate this impact on QoL by addressing parents' concerns about test results and their health implications. Assessing parents' worry early in the testing process may also aid in identifying those most likely in need of psychosocial support.

Support for Community School Personnel Working with Pediatric Cancer Patients: A Quality Improvement Initiative.

Improved therapies and increased survival rates are sending more pediatric cancer patients and survivors back to their classrooms; however, most community school personnel lack training or experience in working with these students. The aim of this quality improvement project was twofold: (a) to evaluate community school personnel's perceptions of their preparedness to work with patients and childhood cancer survivors who have reentered the classroom; and (b) to standardize school reentry supports to improve community school personnel preparedness. Twenty community school personnel, prekindergarten through 12-grade teachers, guidance counselors, and administrators, who had previously worked with a pediatric cancer patient were surveyed regarding their experiences with the patient's school reentry. Responses were coded and analyzed, and a thematic map was created. School personnel reported concerns related to student functioning, such as academic readiness, cognitive impacts of treatment, social-emotional adjustment, physical ability to participate in school, and medical fragility. They also reported concerns related to their own ability to accommodate the student's needs. These results were used to design educational guides for community personnel consisting of information and resources to support them in managing the unique academic, social-emotional, physical, and medical needs of pediatric cancer patients and survivors in the classroom.

Pill-Swallowing Training in Very Young Children With Cancer: A Case Series and Developmental Considerations.

Pill-swallowing training (PST) is a promising behavioral intervention. However, previous studies of PST have largely reported outcomes only in children aged 6 years and older. In the pediatric oncology setting, younger children may benefit from learning to swallow pills, with motivators such as avoiding bad-tasting liquid medications, simplifying oral medication routines, and accessing trials for patients with poor prognoses. Here, we briefly describe the standard PST intervention protocol and report success with very young patients experiencing a variety of medical, emotional, behavioral, and developmental complications. The current case series illustrates the utility of traditional behavioral PST interventions with novel supplements, such as intervention to increase general compliance or decrease anxiety, in four young children with cancer. These cases highlight the effectiveness of PST and describe the positive impact reported by each family. Developmental considerations for using PST with young children with cancer are offered.

Behavioral sleep intervention to reduce bedsharing prior to stem cell transplant.

STUDY OBJECTIVES: Sleep disturbance is common in young children who are otherwise healthy and even more so in children with cancer. To address sleep disturbance in early childhood, caregivers may use bedsharing to reduce stress. Although bedsharing is not typically discouraged in children over the age of 1 year, it may present a safety and infection control concern for youth preparing for stem cell transplantation. METHODS: We highlight the successful application of evidence-based sleep interventions to eliminate bedsharing before admission to the stem cell transplantation unit through 3 case examples of patients who were 2 years of age or younger diagnosed with cancer and preparing for stem cell transplantation. RESULTS: The behavioral sleep interventions included sleep hygiene education, gradual fading, unmodified extinction, and graduated extinction. CONCLUSIONS: When medically indicated and tailored to family preferences, behavioral interventions can effectively and efficiently eliminate bedsharing for young children preparing for stem cell transplantation.