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The importance of measuring quality of survival within paediatric oncology trials is increasingly recognised. However, capturing neuropsychological outcomes and other aspects of quality of survival in the context of large or multinational trials can be challenging. We provide examples of protocols designed to address this challenge recently employed in clinical trials in the USA and Europe. We discuss their respective strengths and challenges, obstacles encountered and future opportunities for transatlantic collaboration.

Four multisite randomized clinical trials of 1400 caregivers of children newly diagnosed with cancer showed that the Bright IDEAS (BI) paradigm of problem-solving skills training is an acceptable and efficacious approach to alleviating the high levels of distress they experience. To facilitate providing evidence-based caregiver support as recommended in the pediatric oncology standards of care, the project described here was designed to disseminate BI to 200 psychosocial professionals.We partnered with the Children's Oncology Group (COG), Association of Pediatric Oncology Social Workers (APOSW), Association of Pediatric Hematology/Oncology Nurses (APHON), and special interest group in pediatric hematology/oncology of the Society for Pediatric Psychology (SPP). Membership surveys revealed substantial enthusiasm for training in BI. We structured training to include review of the evidence base for BI, role plays, and strategies for implementation at individual sites. Four conference calls designed to enhance implementation were held one, two, three, and five months after training.Ten 1.5-day workshops were held in conjunction with annual meetings of COG, APOSW, APHON, and SPP. A total of 209 psychosocial clinicians from 134 sites were trained. Evaluations were highly favorable. Trainees had provided BI to 545 individuals as of the last conference call.Initial dissemination goals were met. BI is now available at numerous pediatric oncology centers, but it has not become part of routine care. Future work focused on implementation might consider top-down approaches that include direct communication with pediatric oncologists and hospital leaders about the benefits of incorporating this evidence-based intervention systemically.

Background The study aimed to evaluate whether simplified chemotherapy followed by dose-reduced irradiation was effective for treating patients (ages 3–21 years) with localized germinoma. The primary endpoint was 3-year progression-free survival (PFS) rate. Methods Patients with a complete response to chemotherapy with carboplatin and etoposide received 18 Gy WVI + 12 Gy boost to the tumor bed. Patients with partial response proceeded to 24 Gy WVI + 12 Gy. Longitudinal cognitive functioning was evaluated prospectively on ALTE07C1 and was a primary study aim. Results One hundred and fifty-one patients were enrolled; 137 were eligible. Among 90 evaluable patients, 74 were treated with 18 Gy and 16 with 24 Gy WVI. The study failed to demonstrate noninferiority of the 18 Gy WVI regimen compared to the design threshold of 95% 3-year PFS rate, where, per design, patients who could not be assessed for progression at 3 years were counted as failures. The Kaplan-Meier (KM)-based 3-year PFS estimates were 94.5 ± 2.7% and 93.75 ± 6.1% for the 18 Gy and 24 Gy WVI cohorts, respectively. Collectively, estimated mean IQ and attention/concentration were within normal range. A lower mean attention score was observed at 9 months for patients treated with 24 Gy. Acute effects in processing speed were observed in the 18 Gy cohort at 9 months which improved at 30-month assessment. Conclusions While a failure according to the prospective statistical noninferiority design, this study demonstrated high rates of chemotherapy responses, favorable KM-based PFS and OS estimates in the context of reduced irradiation doses and holds promise for lower long-term morbidities for patients with germinoma.

Importance Brain tumors are the leading cause of disease-related death in children. Medulloblastoma is the most common malignant embryonal brain tumor, and strategies to increase survival are needed. Objective To evaluate therapy intensification with carboplatin as a radiosensitizer and isotretinoin as a proapoptotic agent in children with high-risk medulloblastoma in a randomized clinical trial and, with a correlative biology study, facilitate planned subgroup analysis according to World Health Organization consensus molecular subgroups of medulloblastoma. Design, Setting, and Participants A randomized clinical phase 3 trial was conducted from March 2007 to September 2018. Analysis was completed in September 2020. Patients aged 3 to 21 years with newly diagnosed high-risk medulloblastoma from Children’s Oncology Group institutions within the US, Canada, Australia, and New Zealand were included. High-risk features included metastasis, residual disease, or diffuse anaplasia. Interventions Patients were randomized to receive 36-Gy craniospinal radiation therapy and weekly vincristine with or without daily carboplatin followed by 6 cycles of maintenance chemotherapy with cisplatin, cyclophosphamide, and vincristine with or without 12 cycles of isotretinoin during and following maintenance. Main Outcomes and Measures The primary clinical trial end point was event-free survival, using the log-rank test to compare arms. The primary biology study end point was molecular subgroup classification by DNA methylation array. Results Of 294 patients with medulloblastoma, 261 were evaluable after central radiologic and pathologic review; median age, 8.6 years (range, 3.3-21.2); 183 (70%) male; 189 (72%) with metastatic disease; 58 (22%) with diffuse anaplasia; and 14 (5%) with greater than 1.5-cm2residual disease. For all participants, the 5-year event-free survival was 62.9% (95% CI, 55.6%-70.2%) and overall survival was 73.4% (95% CI, 66.7%-80.1%). Isotretinoin randomization was closed early owing to futility. Five-year event-free survival was 66.4% (95% CI, 56.4%-76.4%) with carboplatin vs 59.2% (95% CI, 48.8%-69.6%) without carboplatin (P = .11), with the effect exclusively observed in group 3 subgroup patients: 73.2% (95% CI, 56.9%-89.5%) with carboplatin vs 53.7% (95% CI, 35.3%-72.1%) without (P = .047). Five-year overall survival differed by molecular subgroup (P = .006): WNT pathway activated, 100% (95% CI, 100%-100%); SHH pathway activated, 53.6% (95% CI, 33.0%-74.2%); group 3, 73.7% (95% CI, 61.9%-85.5%); and group 4, 76.9% (95% CI, 67.3%-86.5%). Conclusions and Relevance In this randomized clinical trial, therapy intensification with carboplatin improved event-free survival by 19% at 5 years for children with high-risk group 3 medulloblastoma. These findings further support the value of an integrated clinical and molecular risk stratification for medulloblastoma. Trial Registration ClinicalTrials.gov Identifier:NCT00392327

PURPOSE Children with average-risk medulloblastoma (MB) experience survival rates of ≥ 80% at the expense of adverse consequences of treatment. Efforts to mitigate these effects include deintensification of craniospinal irradiation (CSI) dose and volume. METHODS ACNS0331 (ClinicalTrials.gov identifier: NCT00085735 ) randomly assigned patients age 3-21 years with average-risk MB to receive posterior fossa radiation therapy (PFRT) or involved field radiation therapy (IFRT) following CSI. Young children (3-7 years) were also randomly assigned to receive standard-dose CSI (SDCSI; 23.4 Gy) or low-dose CSI (LDCSI; 18 Gy). Post hoc molecular classification and mutational analysis contextualized outcomes according to known biologic subgroups (Wingless, Sonic Hedgehog, group 3, and group 4) and genetic biomarkers. Neurocognitive changes and ototoxicity were monitored over time. RESULTS Five hundred forty-nine patients were enrolled on study, of which 464 were eligible and evaluable to compare PFRT versus IFRT and 226 for SDCSI versus LDCSI. The five-year event-free survival (EFS) was 82.5% (95% CI, 77.2 to 87.8) and 80.5% (95% CI, 75.2 to 85.8) for the IFRT and PFRT regimens, respectively, and 71.4% (95% CI, 62.8 to 80) and 82.9% (95% CI, 75.6 to 90.2) for the LDCSI and SDCSI regimens, respectively. IFRT was not inferior to PFRT (hazard ratio, 0.97; 94% upper CI, 1.32). LDCSI was inferior to SDCSI (hazard ratio, 1.67%; 80% upper CI, 2.10). Improved EFS was observed in patients with Sonic Hedgehog MB who were randomly assigned to the IFRT arm ( P = .018). Patients with group 4 MB receiving LDCSI exhibited inferior EFS ( P = .047). Children receiving SDCSI exhibited greater late declines in IQ (estimate = 5.87; P = .021). CONCLUSION Reducing the radiation boost volume in average-risk MB is safe and does not compromise survival. Reducing CSI dose in young children with average-risk MB results in inferior outcomes, possibly in a subgroup-dependent manner, but is associated with better neurocognitive outcome. Molecularly informed patient selection warrants further exploration for children with MB to be considered for late-effect sparing approaches.

BACKGROUND/OBJECTIVE: We prospectively examined neuropsychological outcomes and ototoxicity in children with average-risk medulloblastoma. METHODS: Eligible patients included those treated on COG protocol ACNS0331 who completed audiograms at end of therapy or one-year off-therapy, and neuropsychological assessments between 2- and 5-years post-diagnosis. Conventional pure-tone audiometric evaluations (0.25-8kHz) were assigned an ototoxicity grade based on the International Society of Pediatric Oncology (SIOP) grading scale. Grade for the better hearing ear was used for analyses. Participants were divided into two groups: SIOP grade≥3 hearing loss (HL) versus SIOP grade

PURPOSE: To characterize academic and adaptive skill outcomes in survivors of high-risk B-lineage acute lymphoblastic leukemia (HR B-ALL). METHODS: Participants were 178 patients enrolled on a non-therapeutic clinical trial that aimed to characterize neurocognitive and functional outcomes (i.e., academic achievement and adaptive skills) following treatment for childhood HR B-ALL. Eligible patients were treated on Children’s Oncology Group AALL0232 clinical trial that included two treatment randomizations: methotrexate delivery (high- or escalating dose) and corticosteroid (dexamethasone or prednisone). Academic achievement and adaptive skills were evaluated at one time point, 8–24 months after completing treatment. RESULTS: Multivariable logistic regression showed no significant association between treatment variables and outcomes after accounting for age at diagnosis, sex, and insurance status. In multivariable analyses accounting for sex and insurance status, survivors

Objective This study investigated profiles of emotional distress and growth in adolescents and young adults (AYAs) with cancer. Clinical, demographic, and psychosocial factors were examined for their potential to distinguish these profiles and predict health-related quality of life (HRQoL) of AYAs with cancer. Method This was a multicenter, longitudinal study of AYAs diagnosed with cancer at 14-39 years of age. Participants were assessed 3 times over 24 months following a baseline survey administered at diagnosis. Four profiles (resilient, resilient growth, distressed, distressed growth) were derived using published cutoff points on standardized measures of depression, anxiety, posttraumatic stress disorder, and posttraumatic growth. Mixed-effects models were used to examine profile correlates and the extent to which profiles were associated with HRQoL. Results Among 179 participants at Time 1, the proportion of profiles ranged from 18.8% for the resilient profile to 30.4% for the distressed-growth profile. These proportions remained consistent over time. Factors that appeared to distinguish these profiles included work or school status, sex, race, age at diagnosis, treatment status, prognosis, and personality characteristics. When compared to AYAs with resilient-growth profiles, HRQoL was significantly worse for AYAs reporting distressed and distressed-growth profiles, controlling for demographic, clinical, and social characteristics. Conclusion The current study found 4 patterns of psychological adjustment in AYAs with cancer. The resilient-growth profile was associated with better HRQoL, whereas distressed and distressed-growth profiles were associated with worse HRQoL. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

BACKGROUND/OBJECTIVES We examined longitudinal verbal and visual memory functioning in children treated for medulloblastoma on COG protocol ACNS0331. METHODS Children with medulloblastoma participated in neuropsychological testing at three timepoints over a 6-year period. Children aged 3–7 years were randomized to receive craniospinal irradiation (CSI) of either 23.4Gy (standard dose; SDCSI) or 18Gy (lower dose; LDCSI). Children aged 8+ received SDCSI. All children were also randomized to receive either a reduced radiation boost to the involved field (IFRT) or a standard boost to the whole posterior fossa (PFRT). Memory functioning was evaluated an average of 0.67(T1), 2.95(T2), and 4.90(T3) years post-diagnosis. RESULTS Of 464 eligible patients enrolled on ACNS0331, 354 (76%; 65.3% male, 83.1% white) completed some neuropsychological testing. Mean age at diagnosis was 9.1 years (range=3–19). Verbal and visual short-term memory and learning were broadly within the average range for the overall sample at all three timepoints. However, a large percentage of children exhibited scores ≥1SD below the mean on tasks of verbal learning both immediately (43.4%) and after a delay (40.7%) at T3. In addition, 58.6% of children randomized to SDCSI exhibited impairment in verbal learning after a delay compared to 34.8% of children randomized to LDSCI, and 35.0% of those aged ≥8 at diagnosis receiving SDCSI. CONCLUSIONS Younger children receiving SDCSI have particularly high rates of memory impairment five years after diagnosis of medulloblastoma. Limiting CSI dose and/or volume in young children treated for this diagnosis may improve outcomes for memory functioning.

BACKGROUND Cancer-related sexual dysfunction has been reported among adolescents and young adults (AYAs); however, its prevalence over time has not been examined. This longitudinal study investigated sexual dysfunction in AYAs over the course of 2 years after the initial diagnosis. METHODS Young adult patients (18-39 years old) completed the Medical Outcomes Study Sexual Functioning Scale within the first 4 months of their diagnosis (n = 123) and again 6 (n = 107) and 24 months later (n = 95). An ordered multinomial response model analyzed changes in the probability of reporting sexual dysfunction over time and the independent effects of demographic, clinical, and psychosocial variables. RESULTS More than half of the participants reported sexual functioning to be problematic at each assessment. The probability of reporting sexual dysfunction increased over time (P < .01) and was greater for cancer patients who were female (P < .001), older (P < .01), married or in a committed relationship (P < .001), treated with chemotherapy (P < .05), and reporting comorbid psychological distress (P < .001) and lower social support (P < .05). For women, being in a relationship increased the likelihood of reporting sexual problems over time; for men, the likelihood of reporting sexual problems increased regardless of their relationship status. CONCLUSIONS A substantial proportion of young adults report ongoing problems with sexual functioning in the first 2 years after their cancer diagnosis. These findings justify the need to evaluate and monitor sexual functioning throughout a continuum of care. Cancer 2018;124:398-405. © 2017 American Cancer Society.

Item does not contain fulltext Personality may affect the way adolescents and young adults (AYAs) with cancer report health-related quality of life (HRQoL). Patients aged 15-39 years (n = 165) completed a survey at 12-16 months postdiagnosis. The survey included questions on HRQoL (SF-36), distress Brief Symptom Inventory-18, and personality (NEO-Five-Factor Inventory). Personality traits were not associated with physical HRQoL. The personality trait neuroticism was negatively associated with mental HRQoL (beta = -0.37; p < 0.001) and positively with psychological distress (beta = 0.47; p < 0.001). Hierarchical regression and mediation analyses indicated that psychological distress fully mediated the association between neuroticism and mental HRQoL. Findings emphasize the importance of psychosocial intervention for distress in AYAs with cancer.

PURPOSE: Our study aims to determine whether receipt of a written survivorship care plan (SCP) is associated with five self-reported health behaviors known to be correlated with positive long-term outcomes for cancer survivors: 1) attending a recent medical appointment, 2) exercise in the past month, 3) non-smoking status, 4) mammography in the past two years, and 5) up-to-date colorectal cancer screening. METHODS: In this secondary data analysis, we used data from the 2014 Behavioral Risk Factor Surveillance System (BRFSS) cancer survivorship module for 1,855 off-treatment cancer survivors. Multivariable logistic regression accounting for complex survey design was used to examine the association between SCP receipt and each of the five preventive health behaviors. RESULTS: Overall, 37% (669/1,855) of survivors reported receiving a written survivorship care plan. In the logistic regression models adjusted for sociodemographic and disease-related factors, SCP receipt was associated with having a recent medical appointment (OR (95% CI): 2.81 (1.27–6.22)), exercise in the past month (1.78 (1.20–2.63)), non-smoking status (2.27 (1.26–4.12)), and up-to-date mammography (2.25 (1.30–3.88)). Receipt of a survivorship care plan was not associated with colorectal cancer screening (1.2 (0.73–2.03)). CONCLUSIONS: This study provides preliminary evidence that SCPs may be helpful in promoting health behaviors among cancer survivors, including attending a regular medical appointment, mammography screening, exercise, and abstinence from smoking. Additionally, the low rates of SCP provision highlights an important missed opportunity and area for intervention. IMPLICATIONS FOR CANCER SURVIVORS: Providing survivors with SCPs may help to increase important health behaviors.

Currently, there are an estimated 400,000 long-term survivors of childhood cancer in the United States. Chronic leukoencephalopathy is a potential devastating late effect that can manifest as a range of neurological and neurocognitive sequelae. Survivors of the acute lymphocytic leukemia, central nervous system tumors, and stem cell transplant have frequently been exposed to cranial radiation, systemic and intrathecal chemotherapy, which places them at risk of developing chronic leukoencephalopathy. Defining leukoencephalopathy and its neuroimaging characteristics, the population of survivors at risk, its long-term consequences, and identifying prevention and intervention strategies can potentially mitigate the morbidity of these survivors. Better understanding of those at risk of leukoencephalopathy and its symptoms can lead to an improved quality of life for these cancer survivors.

Primarily due to concerns about severe neurocognitive sequelae, immediate post-surgical craniospinal radiotherapy (CSRT) is often avoided in young children (

Priorities for young adult survivorship care from the survivors’ perspective are not well documented. To address this within our patient population, we conducted a multi-method needs assessment of young adult survivors of pediatric, adolescent, and young adult cancer in South Texas to get a better understanding of the ongoing challenges and priorities for their survivorship needs and related services. Participants were 18 to 39 years at the time of the needs assessment and predominately Hispanic. In an online survey, survivors most commonly cited being concerned about their physical and mental health, long-term treatment effects, recurrence, and health insurance issues. Participants stated that they received critical support from family, friends, and medical staff, but they would like to receive additional support from other cancer survivors through peer mentorship opportunities and survivor retreats/social events.

As the mortality of pediatric cancers has decreased, focus on neuropsychological morbidities of treatment sequelae have increased. Neuropsychological evaluations are essential diagnostic tools that assess cognitive functioning and neurobiological integrity. These tests provide vital information to support ongoing medical care, documenting cognitive morbidity and response to interventions. We frame standards for neuropsychological monitoring of pediatric patients with CNS malignancy or who received cancer-directed therapies involving the CNS and discuss billing for these services in the United States in the context of clinical research. We describe a cost-effective, efficient model of neuropsychological monitoring that may increases access to neuropsychological care.

Background Mentorship of junior faculty is an integral component of career development. The Children's Oncology Group (COG) Young Investigator (YI) Committee designed a mentorship program in 2004 whose purpose was to pair YIs (faculty ≤10 years of first academic appointment) with a senior mentor to assist with career development and involvement in COG research activities. This study reports on the committee's ability to achieve these goals. Procedure An online survey was sent to YIs who were registered with the program from 2004 to2015, assessing three major domains: (1) overall experience with the mentor pairing, (2) satisfaction with the program, and (3) academic accomplishments of the mentees. Results The response rate was 64% (110/171). Overall, YIs rated the success of their mentorship pairing as 7.2 out of 10 (median) (25th, 75th quartile 3.6, 9.6). The direct effects of the mentorship program included 70% YIs reporting a positive effect on their career, 40% reporting any grant or manuscript resulting from the pairing, 47% forming a new research collaboration, and 43% receiving appointment to a COG committee. Respondents reported success in COG with 38% authoring a manuscript on behalf of COG and 65% reporting a leadership position including seven current or past COG discipline chairs and 20 study chairs. Finally, 74% of respondents said they would consider serving as mentors in the program in the future. Conclusion The COG YI mentorship program has been well received by the majority of the participants and has helped to identify and train many current leaders in COG.

OBJECTIVETo examine longitudinal neuropsychological functioning in children receiving treatment for medulloblastoma on COG clinical trial ACNS0331.METHODSChildren aged 3 and older diagnosed with medulloblastoma participated in neuropsychological testing as part of the original study design or in conjunction with COG protocol ALTE07C1. Children under 8 were randomized to receive craniospinal irradiation (CSI) of either 18 Gy (reduced dose) or 23.4 Gy (standard dose); all children aged 8+ received 23.4 Gy. All children received either a 54 Gy boost to the entire posterior fossa (standard boost) or tumor bed (reduced volume boost), plus standard chemotherapy. Intellectual functioning (IQ) of children was evaluated an average of 0.67 (+0.21) and 2.99 (+0.59) years post-diagnosis.RESULTSOf 464 eligible and evaluable patients enrolled on ACNS0331, 337 (72.6%) completed intellectual testing at one or both timepoints (mean age at diagnosis=9.1 [SD=4.06], range 3-19 years; 65.3% male; 83.1% white). Mean estimated IQ was in the average range at both timepoints (mean IQ T1=95.7 + 15.14; mean IQ T2=94.4 + 14.21), and declined an average of 2.2 (+ 9.98) points over time. Among children aged 3-7 at diagnosis, those randomized to standard dose CSI exhibited greater IQ declines over time than those in the lower-dose group (-7.2 vs. -0.4, respectively; p= .04). Among all ages, younger children (p

Purpose Survivors of childhood acute lymphoblastic leukemia (ALL) are at risk for neurocognitive deficits that are associated with treatment, individual, and environmental factors. This study examined the impact of different methotrexate (MTX) and corticosteroid treatment strategies on neurocognitive functioning in children with high-risk B-lineage ALL. Methods Participants were randomly assigned to receive high-dose MTX with leucovorin rescue or escalating dose MTX with PEG asparaginase without leucovorin rescue. Patients were also randomly assigned to corticosteroid therapy that included either dexamethasone or prednisone. A neurocognitive evaluation of intellectual functioning (IQ), working memory, and processing speed (PS) was conducted 8 to 24 months after treatment completion (n = 192). Results The method of MTX delivery and corticosteroid assignment were unrelated to differences in neurocognitive outcomes after controlling for ethnicity, race, age, gender, insurance status, and time off treatment; however, survivors who were age < 10 years at diagnosis (n = 89) had significantly lower estimated IQ ( P < .001) and PS scores ( P = .02) compared with participants age ≥ 10 years. In addition, participants who were covered by US public health insurance had estimated IQs that were significantly lower ( P < .001) than those with US private or military insurance. Conclusion Children with high-risk B-lineage ALL who were age < 10 years at diagnosis are at risk for deficits in IQ and PS in the absence of cranial radiation, regardless of MTX delivery or corticosteroid type. These data may serve as a basis for developing screening protocols to identify children who are at high risk for deficits so that early intervention can be initiated to mitigate the impact of therapy on neurocognitive outcomes.

BACKGROUND: Cancer-related sexual dysfunction has been reported among adolescents and young adults (AYAs); however, its prevalence over time has not been examined. This longitudinal study investigated sexual dysfunction in AYAs over the course of 2 years after the initial diagnosis. METHODS: Young adult patients (18–39 years old) completed the Medical Outcomes Study Sexual Functioning Scale within the first 4 months of their diagnosis (n = 123) and again 6 (n = 107) and 24 months later (n = 95). An ordered multinomial response model analyzed changes in the probability of reporting sexual dysfunction over time and the independent effects of demographic, clinical, and psychosocial variables. RESULTS: More than half of the participants reported sexual functioning to be problematic at each assessment. The probability of reporting sexual dysfunction increased over time (P < .01) and was greater for cancer patients who were female (P < .001), older (P < .01), married or in a committed relationship (P < .001), treated with chemotherapy (P < .05), and reporting comorbid psychological distress (P < .001) and lower social support (P < .05). For women, being in a relationship increased the likelihood of reporting sexual problems over time; for men, the likelihood of reporting sexual problems increased regardless of their relationship status. CONCLUSIONS: A substantial proportion of young adults report ongoing problems with sexual functioning in the first 2 years after their cancer diagnosis. These findings justify the need to evaluate and monitor sexual functioning throughout a continuum of care.

Purpose To examine changes in health-related quality of life (HRQoL) and its predictors during the first 2 years after initial cancer diagnosis in adolescent and young adult (AYA) patients with cancer. Patients and Methods A multicenter, longitudinal, prospective study was conducted among a diverse sample of AYA patients with cancer ages 15 to 39 years. One hundred seventy-six patients (75% response) completed a self-report measure of HRQoL (Short Form-36 [SF-36]) within the first 4 months after diagnosis and again 12 and 24 months later. Linear mixed models with random intercepts and slopes estimated changes in QoL. Results Recently diagnosed AYA patients with cancer had significantly worse physical component scale (PCS) scores (38.7 v 52.8; P < .001) and mental component scale (MCS) scores (42.9 v 48.9; P < .001) when compared with population norms. Significant improvements in PCS and MCS scores from baseline to 24-month follow-up were observed; however, these increases were largest during the first 12 months. At the 24-month follow-up, AYA patients still had significantly lower PCS scores (48.0 v 52.8; P < .001) and MCS scores (45.8 v 48.9; P = .002) when compared with population norms. Multivariable analyses revealed that improvements in PCS and MCS scores were primarily a function of being off-treatment and being involved in school or work. PCS but not MCS scores were worse for AYA patients diagnosed with cancers with poorer prognoses. Conclusion Although HRQoL improved over time, it was still compromised 24 months after primary diagnosis. Given relatively little observed improvement in HRQoL during the 12- to 24-month period after diagnosis, AYA patients may benefit from supportive care interventions administered during the second year after diagnosis.

Item does not contain fulltext PURPOSE: This study examines posttraumatic growth (PTG) among adolescents and young adults (AYAs) with cancer, as well as its correlates and trajectories over time. The study also explores the buffering role of PTG on the associations between posttraumatic stress (PTS), health-related quality of life (HRQoL), and psychological distress. METHODS: A multicenter, longitudinal, prospective study was conducted among AYA cancer patients aged 14-39 years. One hundred sixty-nine patients completed a self-report measure of PTG (PTGI) and PTS (PDS) 6, 12, and 24 months after baseline (within the first 4 months of diagnosis). At 24-month follow-up, HRQoL (SF-36) and psychological distress (BSI-18) were also assessed. RESULTS: Among participants, 14% showed increasing PTG, 45% remained at a stable high PTG level, 14% showed decreasing PTG, and 27% remained at a stable low PTG level. AYAs who remained high on PTG were more often younger, female, and received chemotherapy. PTG level at 6-month follow-up was predictive of mental HRQoL (beta = 0.19; p = 0.026) and psychological distress (beta = -0.14; p = 0.043) at 24-month follow-up when corrected for PTS and sociodemographic and clinical covariates. No relationship between PTG and physical HRQoL was found. The interactive effects of PTS and PTG on outcomes were not significant, indicating that buffering did not take place. CONCLUSION: This study indicates that PTG is dynamic and predicts mental well-being outcomes but does not buffer the effects of PTS. Psychosocial interventions should focus on promoting PTG and reducing PTS in order to promote the adjustment of AYAs diagnosed with cancer.

Objective Theories of posttraumatic growth suggest that some degree of distress is necessary to stimulate growth; yet, investigations of the relationship between stress and growth following trauma are mixed. This study aims to understand the relationship between posttraumatic stress symptoms and posttraumatic growth in adolescent and young adult (AYA) cancer patients. Method 165 AYA patients aged 14–39 years at diagnosis completed standardized measures of posttraumatic stress and posttraumatic growth at 12 months following diagnosis. Locally weighted scatterplot smoothing and regression were used to examine linear and curvilinear relationships between posttraumatic stress and posttraumatic growth. Results No significant relationships between overall posttraumatic stress severity and posttraumatic growth were observed at 12-month follow-up. However, curvilinear relationships between re-experiencing (a posttraumatic stress symptom) and two of five posttraumatic growth indicators (New Possibilities, Personal Strengths) were observed. Conclusion Findings suggest that re-experiencing is associated with some aspects of posttraumatic growth but not others. Although re-experiencing is considered a symptom of posttraumatic stress disorder, it also may represent a cognitive process necessary to achieve personal growth for AYAs. Findings call into question the supposed psychopathological nature of re-experiencing and suggest that re-experiencing, as a cognitive process, may be psychologically adaptive. Opportunities to engage family, friends, cancer survivors, or health care professionals in frank discussions about fears, worries, or concerns may help AYAs re-experience cancer in a way that enhances their understanding of what happened to them and contributes to positive adaptation to life after cancer. Copyright © 2014 John Wiley & Sons, Ltd.

Purpose Identifying at-risk adolescent and young adult (AYA) cancer patients and referring them to age-appropriate psychosocial support services may be instrumental in reducing psychological distress and promoting psychosocial adaptation. The purpose of this study is to identify trajectories of clinically significant levels of distress throughout the first year following diagnosis and to distinguish factors, including supportive care service use, that predict the extent to which AYAs report distress. Methods In this prospective multisite study, 215 AYAs aged 15–39 years were assessed for psychological distress and psychosocial support service use within the first 4 months of diagnosis and again 6 and 12 months later. On the basis of distress scores, respondents were assigned to one of four distress trajectory groups (Resilient, Recovery, Delayed, and Chronic). Multiple logistic regression analyses examined whether demographics, clinical variables, and reports of unsatisfied need for psychosocial support were associated with distress trajectories over 1 year. Results Twelve percent of AYAs reported clinically significant chronic distress throughout the first 12 months following diagnosis. An additional 15% reported delayed distress. Substantial proportions of AYAs reported that needs for information (57%), counseling (41%), and practical support (39%) remained unsatisfied at 12 months following diagnosis. Not getting counseling needs met, particularly with regard to professional mental health services, was observed to be significantly associated with distress over time. Conclusions Substantial proportions of AYAs are not utilizing psychosocial support services. Findings suggest the importance of identifying psychologically distressed AYAs and addressing their needs for mental health counseling throughout a continuum of care. Copyright © 2014 John Wiley & Sons, Ltd.

For children and adolescents diagnosed with cancer, advancesin treatment have required intensive treatment regimens that havethe potential to challenge and disrupt the psychosocial develop-ment of the child and the family system. Family caregivers con-sistently report high levels of distress, particularly around theinitial diagnosis [1]. This distress may interfere with their abilityto fully understand and comply with the best-available therapies.While the majority of children and families adapt and cope well,and some even demonstrate psychological growth, vulnerablesub-groups remain. Notably, children with tumors of the centralnervous system (CNS); children with diseases that require thera-pies with a potential adverse impact on the CNS; and childrenwith pre-existing individual or familial risk factors are at risk forshort- and long-term psychosocial problems [2].Life Course Theory [3] suggests that each child/family bringsa complex array of factors [i.e., socioeconomic status (SES), race,ethnicity, family dynamics, personal attributes, trauma history,etc.] that are relevant to the trajectory of adaptation to a child’sdiagnosis with cancer from diagnosis to survivorship or bereave-ment. These pre-existing social and psychological factors play apowerful role in the psychosocial outcomes for children and theirfamilies. Additionally, there are undoubtedly times during thecourse of treatment that are particularly challenging (i.e., unantic-ipated treatment complications, relapse, and transitional points).For a number of decades, there have been ongoing efforts withinthe international community of researchers and clinicians in pe-diatric oncology to identify and understand issues related to psy-chosocial quality of life (QoL) and functioning of patients andtheir families. Many of these investigators have been workingwithin the structure of the Children’s Oncology Group (COG)and the Behavioral Science Committee (BSC).Based on previous accomplishments, the research agenda pro-posed here includes [1] utilization of psychometrically robustmeasures within the conceptual framework of Life Course Theoryto enhance understanding of psychosocial/behavioral risk andprotective factors related to disease and treatment, and functionaloutcomes [2]; to empirically evaluate and promote interventionsthat can be translated to routine clinical care; and [3] to establishevidence-based practice and guidelines to optimize the behavioralhealth and psychosocial QoL of children with cancer and theirfamilies.Medical advances have led to the successful development ofnew and more effective treatments for pediatric cancer. Withchanges in medical cancer treatment protocols, particularly thosethat intentionally aim to reduce toxicity, there exists a need toassess the costs and benefits on morbidities. COG includes multi-ple disciplines invested in establishing optimal treatments andprograms of supportive care for children diagnosed with cancerand their families. This organization creates the potential forcutting edge interdisciplinary research collaboration. With thisin mind, in 2006, the COG Psychology Discipline Committeewas renamed the BSC to intentionally broaden interdisciplinarymembership and collaboration, particularly from nursing, social

Pediatric central nervous system (CNS) tumor survivors are at high risk for numerous late effects including decreased health-related quality of life (HRQOL). Our objective was to summarize studies describing HRQOL in pediatric CNS tumor survivors and compare HRQOL outcomes in studies that included a comparison group.EMBASE, MEDLINE, and PsychINFO were used to identify relevant articles published until August, 2016. Eligible studies reported outcomes for pediatric CNS tumor survivors diagnosed before age 21, at least 5 years from diagnosis and/or 2 years off therapy and used a standardized measure of HRQOL. All data were abstracted by two reviewers. Random-effects meta-analyses were performed using Review Manager 5.0.Of 1,912 unique articles identified, 74 were included in this review. Papers described 29 different HRQOL tools. Meta-analyses compared pediatric CNS tumor survivors to healthy comparisons and other pediatric cancer survivors separately. HRQOL was significantly lower for CNS (n = 797) than healthy comparisons (n = 1,397) (mean difference = -0.54, 95% confidence interval [CI] = -0.72 to -0.35, P0.001, IPediatric CNS tumor survivors experience worse HRQOL than healthy comparisons and non-CNS cancer survivors. Future HRQOL work should be longitudinal, and/or multisite studies that examine HRQOL by diagnosis and treatment modalities.

Objectives Post-traumatic stress symptoms (PTSS) have been identified as a meaningful indicator of distress in cancer survivors. Distinct from young adult survivors of childhood cancer, young people diagnosed with cancer as adolescents and young adults (AYAs) face unique psychosocial issues; however, there is little published research of PTSS in the AYA population. This study examines prevalence and predictors of PTSS among AYAs with cancer. Methods As part of a longitudinal study of AYAs with cancer, 151 patients aged 15–39 years completed mailed surveys at 6 and 12 months post-diagnosis. Severity of PTSS was estimated at 6 and 12 months post-diagnosis. Multiple regression analyses were conducted to investigate the predictive effects of socio-demographic and clinical characteristics on changes in PTSS over time. Results At 6 and 12 months, respectively, 39% and 44% of participants reported moderate to severe levels of PTSS; 29% had PTSS levels suggestive of post-traumatic stress disorder. No significant differences in severity of PTSS between 6 and 12 months were observed. Regression analyses suggested that a greater number of side effects were associated with higher levels of PTSS at 6 months. Currently receiving treatment, having surgical treatment, diagnosis of a cancer type with a 90–100% survival rate, remaining unemployed/not in school, and greater PTSS at 6 months were associated with higher levels of PTSS at 12 months. Conclusions Post-traumatic stress symptoms were observed as early as 6 months following diagnosis and remained stable at 12-month follow-up. The development of early interventions for reducing distress among AYA patients in treatment is recommended. Copyright © 2012 John Wiley & Sons, Ltd.

BACKGROUND: Adolescents and young adults (AYAs) with cancer demonstrate biomedical risks and psychosocial issues distinct from those of children or older adults. In this study, the authors examined and compared the extent to which AYAs treated in pediatric or adult oncology settings reported use of, and unmet need for, psychosocial support services. METHODS: Within 4 months of initial cancer diagnosis, 215 AYAs ages 14 to 39 years (99 from pediatric care settings and 116 from adult care settings; 75% response rate) were assessed for reporting use of information resources, emotional support services, and practical support services. Statistical analyses derived odds ratios and 95% confidence intervals for service use and unmet needs after controlling for race, employment/school status, sex, relationship status, severity of cancer, treatment, and treatment-related side effects. RESULTS: AYAs ages 20 to 29 years were significantly less likely than teens and older patients ages 30 to 39 years to report using professional mental health services and were significantly more likely to report an unmet need with regard to cancer information, infertility information, and diet/nutrition information. Compared with teens who were treated in pediatric facilities, AYAs who were treated in adult facilities were more likely to report an unmet need for age-appropriate Internet sites, professional mental health services, camp/retreats programs, transportation assistance, and complementary and alternative health services. CONCLUSIONS: Substantial proportions of AYAs are not getting their psychosocial care needs met. Bolstering psychosocial support staff and patient referral to community-based social service agencies and reputable Internet resources may enhance care and improve quality of life for AYAs. Cancer 2013. © 2012 American Cancer Society.

Background Neurocognitive functioning is an important construct in childhood cancer survivorship, given the potential neurotoxicity of central nervous system (CNS) diseases and treatments and the relevance for important functional outcomes in adulthood. However, within pediatric oncology cooperative groups there have been significant barriers to neurocognitive data collection that have historically resulted in incomplete data (

Newer treatments have resulted in increasing numbers of survivors of childhood cancer, for whom neurological and neurocognitive toxicity directly impacts overall functioning and quality of life. There are multiple disease- and host-related factors that influence the development of cancer-related neurocognitive dysfunction, which can progress over time and lead to significant functional impairments. This article provides an overview of the types of neurocognitive deficits seen in survivors of childhood brain tumors, the tools used to assess neurocognitive function, and the factors that impact its severity. This provides a framework for consideration of potential areas for primary prevention by reducing treatment-related toxicity as well as interventions, using behavioral and pharmacologic treatments.

Supratentorial primitive neuroectodermal tumors (sPNETs) in children are aggressive tumors that require intensive chemotherapy and craniospinal irradiation, but we have little information on long-term neurocognitive outcomes. Eighty-five children were enrolled on ACNS0332 based on histopathological criteria consistent with WHO guidelines; 27 of these (61% female) co-enrolled on the neurocognitive study ALTE07C1, and have complete T1 data (~9 months post-diagnosis); 20 also completed testing at T2 (~30 months post-diagnosis). Mean age at T1 was 9.7 (4.52) years, and 11.6 (4.50) at T2. Tumors with pineal involvement made up 45% of the sample. Memory, intellectual and executive function were analyzed at T1 and T2. At T1, the entire group showed deficits in processing speed (WISC PSI M=79.5, SD=14.86), spatial memory (CMS Dots M=7.4, SD=2.57), and working memory (BRIEF WMI M=64.5, SD=16.45) with average IQ (M=90.4, SD=19.05). There were no T1 differences between patients with pineal versus non-pineal tumors. At T2, a broader range of deficits emerged; areas impaired at T1 worsened at T2, and broader memory dysfunction appeared. By T2, significant group differences were evident in favor of patients with pineal involvement in processing speed (WISC Coding pineal M=6.2 (2.71), non-pineal M=3.4 (1.71)) and working memory (BRIEF WM pineal M=56.8 (11.96), non-pineal M=73.3 (11.81)). Children with sPNETS appear to develop substantial cognitive morbidity within the first 30 months after diagnosis, with worse outcomes in non-pineal tumors. These findings have implications for understanding mechanisms of cognitive late effects in these patients and may provide novel and important opportunities for individualized, patient-centered neuropsychological care.

BACKGROUND: Cognitive late effects in survivors of medulloblastoma are well-documented; however, the onset and development of domain-specific difficulties have not yet been well-described in large, prospective samples of children. We aimed to examine neuropsychological functioning of children receiving treatment for medulloblastoma on a COG protocol within the first year after diagnosis. METHODS: Children aged 8 and older who were diagnosed with medulloblastoma and treated on COG ACNS0331 were invited to participate in neuropsychological testing as part of the original study design or, later, in conjunction with COG protocol ALTE07C1. All children received 24 Gy of cranial-spinal radiation with a boost either to the tumor bed or to the entire posterior fossa as well as standard chemotherapy. Participants were evaluated at 9 (+ 3) months post-diagnosis with a battery measuring intellectual functioning, processing speed, and working memory. RESULTS: One hundred sixty-one participants (mean age = 12.3, range = 8-20, 61.5% male, 77.6% white) were evaluated. Early medical complications included 19.3% (n = 31) children with cerebellar mutism and 29.8% (n = 48) with treated hydrocephalus. Mean estimated IQ was in the average range, as measured by age-appropriate versions of the Wechsler scales (Mean = 96.4, SD = 15.4). In contrast, processing speed scores were impaired (Mean = 80.3, SD = 13.6). Estimated IQ and processing speed scores were unrelated to baseline demographics; however, slower processing speed was significantly associated with treated hydrocephalus (Treated hydrocephalus M = 73. 3; F = 3.31, p

As the mortality of pediatric cancers has decreased, focus on neuropsychological morbidities of treatment sequelae have increased. Neuropsychological evaluations are essential diagnostic tools that assess cognitive functioning and neurobiological integrity. These tests provide vital information to support ongoing medical care, documenting cognitive morbidity and response to interventions. We frame standards for neuropsychological monitoring of pediatric patients with CNS malignancy or who received cancer-directed therapies involving the CNS and discuss billing for these services in the United States (US) in the context of clinical research. We describe a cost-effective, efficient model of neuropsychological monitoring that may increases access to neuropsychological care.

Background Pediatric central nervous system (CNS) tumor survivors are at high risk for numerous late effects including decreased health-related quality of life (HRQOL). Our objective was to summarize studies describing HRQOL in pediatric CNS tumor survivors and compare HRQOL outcomes in studies that included a comparison group. Procedure EMBASE, MEDLINE, and PsychINFO were used to identify relevant articles published until August, 2016. Eligible studies reported outcomes for pediatric CNS tumor survivors diagnosed before age 21, at least 5 years from diagnosis and/or 2 years off therapy and used a standardized measure of HRQOL. All data were abstracted by two reviewers. Random-effects meta-analyses were performed using Review Manager 5.0. Results Of 1,912 unique articles identified, 74 were included in this review. Papers described 29 different HRQOL tools. Meta-analyses compared pediatric CNS tumor survivors to healthy comparisons and other pediatric cancer survivors separately. HRQOL was significantly lower for CNS (n = 797) than healthy comparisons (n = 1,397) (mean difference = –0.54, 95% confidence interval [CI] = –0.72 to –0.35, P < 0.001, I2 = 35%). HRQOL was also significantly lower for CNS (n = 244) than non-CNS survivors (n = 414) (mean difference = –0.56, 95% CI = –0.73 to –0.38, P < 0.00001, I2 = 0%). Conclusions Pediatric CNS tumor survivors experience worse HRQOL than healthy comparisons and non-CNS cancer survivors. Future HRQOL work should be longitudinal, and/or multisite studies that examine HRQOL by diagnosis and treatment modalities.

Quality of life (QoL) has been increasingly emphasized in National Cancer Institute (NCI)-sponsored multisite clinical trials. Little is known about the outcomes of these trials in pediatric cancer. Objectives were to describe the proportion of Children’s Oncology Group (COG) QoL studies that successfully accrued subjects and were analyzed, presented or published. We conducted a survey to describe outcomes of COG QoL studies. We included studies that contained at least one QoL assessment and were closed to patient accrual at the time of survey dissemination. Respondents were the investigators most responsible for the QoL aim. Sixteen studies were included; response rate was 100 %. Nine (56 %) studies were embedded into a cancer treatment trial. Only 3 (19 %) studies accrued their intended sample size. Seven (44 %) studies were analyzed, 9 (56 %) were presented, and 6 (38 %) were published. NCI-sponsored pediatric QoL studies have high rates of failure to accrue. Many were not analyzed or disseminated. Using these data, strategies have been implemented to improve conduct in future trials. Monitoring of QoL studies is important to maximize the chances of study success.

Continuous advancement in treatment strategies for childhood acute lymphoblastic leukemia (ALL) have improved survival rates markedly over the past decades. The overall 5-year survival rate is now approaches 90% for survivors treated with contemporary therapies that include central nervous system (CNS)-directed chemotherapy and intensified systemic chemotherapy. Late effects however, including neurocognitive deficits and osteonecrosis may present lifelong consequences for survivors. Children's Oncology Group (COG) protocol AALL0232 examined survival outcomes using a 2 x 2 factorial design that included randomizations for dexamethasone versus prednisone; and high dose methotrexate with leucovorin rescue versus escalating-dose methotrexate with PEG asparaginase. This study aims to describe the academic achievement and general adaptive functioning of patients treated on this protocol. We aim to identify demographic, clinical, and treatment factors that are associated with risk for adverse academic achievement and adaptive functional outcomes. We hypothesize that children diagnosed at younger ages ( Methods: Patients with ALL, treated on COG AALL0232 protocol were identified and approached to participate on AALL06N1, a companion study designed to assess psychological outcomes. Of the 1386 children enrolled on the COG trial eligible for AALL06N1, general adaptive functioning data from 175 participants 8-24 months following completion of therapy were collected. Of these, 45.1% of the participants received dexamethasone and 54.9% prednisone; 48.6% received high dose MTX and 51.4% received escalating dose MTX. Participants were an average of 14.0 months off therapy, and had a mean age of 12.5 years (SD = 5.0 years) at the time of assessment. About 57% of participants had US Private or Military Insurance (Table 1). The Wide Range Achievement Test-IV (WRAT-IV; Wilkinson & Robertson, 2006) was used to assess academic achievement in reading, mathematics, and spelling. The Adaptive Behavior Assessment System II (ABAS-II; Harrison, 2003) is a parent-report measure of adaptive functioning. It results in three Adaptive Domain Scores (Conceptual, Social, Practical) and an overall General Adaptive Composite (GAC). All scores were age standardized. Results: Mean scores for both academic achievement and adaptive functional outcomes were in the average range for all participants (Table 2). Younger children (< 10 years) performed more poorly on Spelling relative to older children (> 10 years). On general adaptive functioning, all mean scores were in the average range with no significant differences between age groups. Participants with private or military insurance had significantly higher academic achievement and adaptive functioning scores in comparison to public, non-US, and other insurances (Table 3). No significant differences were detected based on type of steroid or delivery of MTX (Table 4). Discussion: On widely used measures of academic achievement and adaptive functioning, mean overall scores were in the average range among children treated for ALL. Consistent with a priori hypothesis, the observed academic achievement of younger children was slightly lower for reading and math than for older children, but was only significantly lower for spelling. Our second hypothesis was not supported as there were no significant differences between age groups on adaptive functioning. Participant scores were not dependent on treatment arm; however, insurance status was significantly associated with academic and adaptive functioning scores, particularly for participants with private/military insurance compared to the US public. These results suggest that academic achievement and adaptive functioning in survivors of childhood ALL are, on average, not different from population norms and remain in the average range, despite neurotoxic treatments. Future work needs to follow these trajectories longitudinally to ensure that more significant late effects do not emerge over time. Disclosures No relevant conflicts of interest to declare.

Theories of posttraumatic growth suggest that some degree of distress is necessary to stimulate growth; yet, investigations of the relationship between stress and growth following trauma are mixed. This study aims to understand the relationship between posttraumatic stress symptoms and posttraumatic growth in adolescent and young adult (AYA) cancer patients.165 AYA patients aged 14-39 years at diagnosis completed standardized measures of posttraumatic stress and posttraumatic growth at 12 months following diagnosis. Locally weighted scatterplot smoothing and regression were used to examine linear and curvilinear relationships between posttraumatic stress and posttraumatic growth.No significant relationships between overall posttraumatic stress severity and posttraumatic growth were observed at 12-month follow-up. However, curvilinear relationships between re-experiencing (a posttraumatic stress symptom) and two of five posttraumatic growth indicators (New Possibilities, Personal Strengths) were observed.Findings suggest that re-experiencing is associated with some aspects of posttraumatic growth but not others. Although re-experiencing is considered a symptom of posttraumatic stress disorder, it also may represent a cognitive process necessary to achieve personal growth for AYAs. Findings call into question the supposed psychopathological nature of re-experiencing and suggest that re-experiencing, as a cognitive process, may be psychologically adaptive. Opportunities to engage family, friends, cancer survivors, or health care professionals in frank discussions about fears, worries, or concerns may help AYAs re-experience cancer in a way that enhances their understanding of what happened to them and contributes to positive adaptation to life after cancer.

This study examined whether children and adolescents with Tourette's disorder (TD) experience greater chronic and/or social anxiety than children and adolescents without this diagnosis. The design also included an anxiety-induction task, and we hypothesized that the TD group would report greater increases in physiological arousal (i.e., heart rate) and state anxiety in response to this task when compared to the control group. Results indicated that the TD group did, in fact, report greater levels of both general and social anxiety than the control group. Analyses also indicated that the TD group did experience greater state anxiety both pretask and posttask and that they experienced greater levels of physiological arousal as compared to the control group. However, the increases in arousal and state anxiety experienced by children with TD were not significantly higher than the increases for children without this diagnosis. Group differences were also evident on several subscales of the Child Behavior Checklist. The results provide useful information concerning the anxiety experienced by individuals with TD and suggest that assessment and treatment of TD may need to account for anxiety associated with the disorder.

To provide one of the first prospective reports examining neuropsychological outcomes for children treated with 1800 cGy whole brain radiotherapy (WBRT) and prophylactic chemotherapy versus prophylactic chemotherapy alone for acute lymphoblastic leukemia (ALL). Acute and long-term neuropsychological toxicities associated with WBRT are compared.This multisite study included 188 children, ages 4-21 years at enrollment, who were assessed with standardized neuropsychological tests at 9, 21, and 48 months after diagnosis with intermediate risk ALL. All participating children were receiving treatment on a parent study CCG105.Verbal intelligence (VIQ) scores for children receiving WBRT was significantly lower than VIQ for prophylactic chemotherapy at the 48-month time point (p 0.05). A significant cross-level interaction between time since diagnosis and treatment condition was observed (p 0.05). WBRT did not result in differences in PIQ; both groups of children demonstrated comparable increases in PIQ. Neuropsychological findings at 48 months after diagnosis indicated diminished performance in neuromotor, visual-motor coordination, and executive functioning for children receiving WBRT. Academic achievement was unaffected by WBRT at 4 years after diagnosis.The measurement of verbal and performance IQ as a primary endpoint in ALL clinical trials is critical to characterizing neuropsychological late effects. A trajectory of decline in neuropsychological functioning, specifically verbal IQ, was observed. Missing data within the trial occurred at random and did not impact results observed. The impact of WBRT becomes evident at 48 months after diagnosis, suggesting the need for long-term follow-up beyond the time frame typically used in Phase III trials.

Identifying at-risk adolescent and young adult (AYA) cancer patients and referring them to age-appropriate psychosocial support services may be instrumental in reducing psychological distress and promoting psychosocial adaptation. The purpose of this study is to identify trajectories of clinically significant levels of distress throughout the first year following diagnosis and to distinguish factors, including supportive care service use, that predict the extent to which AYAs report distress.In this prospective multisite study, 215 AYAs aged 15-39 years were assessed for psychological distress and psychosocial support service use within the first 4 months of diagnosis and again 6 and 12 months later. On the basis of distress scores, respondents were assigned to one of four distress trajectory groups (Resilient, Recovery, Delayed, and Chronic). Multiple logistic regression analyses examined whether demographics, clinical variables, and reports of unsatisfied need for psychosocial support were associated with distress trajectories over 1 year.Twelve percent of AYAs reported clinically significant chronic distress throughout the first 12 months following diagnosis. An additional 15% reported delayed distress. Substantial proportions of AYAs reported that needs for information (57%), counseling (41%), and practical support (39%) remained unsatisfied at 12 months following diagnosis. Not getting counseling needs met, particularly with regard to professional mental health services, was observed to be significantly associated with distress over time.Substantial proportions of AYAs are not utilizing psychosocial support services. Findings suggest the importance of identifying psychologically distressed AYAs and addressing their needs for mental health counseling throughout a continuum of care.

Purpose To examine prevalence and changes in symptoms of psychological distress over 1 year after initial cancer diagnosis in adolescent and young adult (AYA) patients with cancer. Sociodemographic and clinical predictors of changes in distress were examined. Patients and Methods In this multisite, longitudinal, prospective study of an ethnically diverse sample, 215 patients age 14 to 39 years were assessed for psychological distress within the first 4 months of diagnosis and again 6 and 12 months later. Linear mixed models with random intercept and slope estimated changes in distress, as measured by the Brief Symptom Inventory-18 (BSI-18). Results Within the first 4 months of diagnosis, 60 respondents (28%) had BSI-18 scores suggesting caseness for distress. On average, distress symptoms exceeded population norms at the time of diagnosis, dipped at the 6-month follow-up, but increased to a level exceeding population norms at the 12-month follow-up. A statistically significant decline in distress over 1 year was observed; however, the gradient of change was not clinically significant. Multivariate analyses revealed that the reduction in distress over time was primarily a function of being off treatment and involved in school or work. Notably, cancer type or severity was not associated with distress. Conclusion Findings emphasize the importance of early psychosocial intervention for distress in AYAs as well as the need to manage treatment-related symptoms and facilitate AYAs' involvement in work or school to the extent possible. Continued research is needed to understand how distress relates to quality of life, functional outcomes, treatment, and symptom burden throughout the continuum of care.

Behavioral science has long played a central role in pediatric oncology clinical service and research. Early work focused on symptom relief related to side effects of chemotherapy and pain management related to invasive medical procedures. As survival rates improved, the focused has shifted to examination of the psychosocial impact, during and after treatment, of pediatric cancer and its treatment on children and their families. The success of the clinical trials networks related to survivorship highlights an even more critical role in numerous domains of psychosocial research and care. Within the cooperative group setting, the field of behavioral science includes psychologists, social workers, physicians, nurses, and parent advisors. The research agenda of this group of experts needs to focus on utilization of psychometrically robust measures to evaluate the impact of treatment on children with cancer and their families during and after treatment ends. Over the next 5 years, the field of behavioral science will need to develop and implement initiatives to expand use of standardized neurocognitive and behavior batteries; increase assessment of neurocognition using technology; early identification of at-risk children/families; establish standards for evidence-based psychosocial care; and leverage linkages with the broader behavioral health pediatric oncology community to translate empirically supported research clinical trials care to practice.

Post-traumatic stress symptoms (PTSS) have been identified as a meaningful indicator of distress in cancer survivors. Distinct from young adult survivors of childhood cancer, young people diagnosed with cancer as adolescents and young adults (AYAs) face unique psychosocial issues; however, there is little published research of PTSS in the AYA population. This study examines prevalence and predictors of PTSS among AYAs with cancer.As part of a longitudinal study of AYAs with cancer, 151 patients aged 15-39 years completed mailed surveys at 6 and 12 months post-diagnosis. Severity of PTSS was estimated at 6 and 12 months post-diagnosis. Multiple regression analyses were conducted to investigate the predictive effects of socio-demographic and clinical characteristics on changes in PTSS over time.At 6 and 12 months, respectively, 39% and 44% of participants reported moderate to severe levels of PTSS; 29% had PTSS levels suggestive of post-traumatic stress disorder. No significant differences in severity of PTSS between 6 and 12 months were observed. Regression analyses suggested that a greater number of side effects were associated with higher levels of PTSS at 6 months. Currently receiving treatment, having surgical treatment, diagnosis of a cancer type with a 90-100% survival rate, remaining unemployed/not in school, and greater PTSS at 6 months were associated with higher levels of PTSS at 12 months.Post-traumatic stress symptoms were observed as early as 6 months following diagnosis and remained stable at 12-month follow-up. The development of early interventions for reducing distress among AYA patients in treatment is recommended.

Neurocognitive deficits are a common late effect experienced by pediatric cancer survivors and can manifest across a variety of domains including: attention and concentration, executive functioning, processing speed, psychomotor skills, verbal memory, visuospatial skills, and language (Moore J, Pediatr Psychol 30:51–63, 2005). Deficits have also been found to manifest across the broader domains of global intellectual functioning and academic performance. These deficits, however, seem to be limited to the specific diagnoses of leukemia and brain tumors. This is largely due to the aggressive CNS-directed treatments, as they induce inalterable structural damage to the brain, which has been linked back to observable deficits in neurocognitive functioning. Preliminary research also indicates that neurocognitive deficits can have serious implications for survivors’ overall functional capabilities as well as their general quality of life. As such, a variety of interventions have begun to be developed in order to address these issues. However, research surrounding these two areas is still in its infancy. Future research needs to address how neurocognitive late effects interfere with greater functional capabilities and general quality of life as well as how interventions can help combat these problems.