Impact of trametinib on the neuropsychological profile of NF1 patients.

PURPOSE: The use of trametinib in the treatment of pediatric low-grade gliomas (PLGG) and plexiform neurofibroma (PN) is being investigated in an ongoing multicenter phase II trial (NCT03363217). Preliminary data shows potential benefits with significant response in the majority of PLGG and PN and an overall good tolerance. Moreover, possible benefits of MEK inhibitor therapy on cognitive functioning in neurofibromatosis type 1 (NF1) were recently shown which supports the need for further evaluation. METHODS: Thirty-six patients with NF1 (age range 3-19 years) enrolled in the phase II study of trametinib underwent a neurocognitive assessment at inclusion and at completion of the 72-week treatment. Age-appropriate Wechsler Intelligence Scales and the Trail Making Test (for children over 8 years old) were administered at each assessment. Paired t-tests and Reliable Change Index (RCI) analyses were performed to investigate change in neurocognitive outcomes. Regression analyses were used to investigate the contribution of age and baseline score in the prediction of change. RESULTS: Stable performance on neurocognitive tests was revealed at a group-level using paired t-tests. Clinically significant improvements were however found on specific indexes of the Wechsler intelligence scales and Trail Making Test, using RCI analyses. No significant impact of age on cognitive change was evidenced. However, lower initial cognitive performance was associated with increased odds of presenting clinically significant improvements on neurocognitive outcomes. CONCLUSION: These preliminary results show a potential positive effect of trametinib on cognition in patients with NF1. We observed significant improvements in processing speed, visuo-motor and verbal abilities. This study demonstrates the importance of including neuropsychological evaluations into clinical trial when using MEK inhibitors for patients with NF1.

Transition Readiness Assessment Questionnaire: Skill gaps and psychosocial predictors of transition readiness among adolescents and young adults with chronic medical conditions.

BACKGROUND: Transferring from paediatric to adult care can be challenging. Adolescents and young adults (AYAs) with chronic health conditions need to develop a specific set of skills to ensure lifelong medical follow-up due to the chronicity of their condition. The Transition Readiness Assessment Questionnaire-French version (TRAQ-FR) is a 19-item questionnaire measuring such skills. The aims of the study were to (1) describe participant characteristics and (2) identify constructs related to, and predictors of, having learned domain-specific transition readiness skills. METHODS: Participants included 216 AYAs aged 14-20 years (M = 15.93; SD = 1.35; 54.1% male) recruited from five outpatient clinics in a Canadian tertiary hospital. AYAs completed the TRAQ-FR, the Pediatric Quality of Life Inventory 4.0 (PedsQL) and a sociodemographic questionnaire. Descriptive, bivariate and binary logistic regression analyses were conducted. RESULTS: Overall, participants reported significantly higher scores on the Talking with Providers, Managing Daily Activities and Managing Medications subscales than on the Appointment Keeping and Tracking Health Issues subscales (F[41075] = 168.970, p < .001). At the item level, median scores (on a 5-point Likert scale) suggest that AYAs had begun practising five of the 19 skills (median scores ≥4; 'Yes, I have started doing this'), while a median score of 1 ('No, I don't know how') was found for one item ('Do you get financial help with school or work?'). At the subscale level, TRAQ-FR skills and skill gaps were related to AYAs' age, sex and PedsQL scores (ps < .05). CONCLUSION: Older and female AYAs were more likely to have begun practising specific TRAQ-FR subscale skills. Better psychosocial functioning was also related to having learned specific transition readiness skills. AYAs show several gaps in transition readiness. Targeted intervention in transition readiness skill development could take into account AYAs' age, sex and psychosocial functioning for a successful transfer to adult care.

Feasibility Study of Taking Back Control Together, an Intervention to Support Parents of Children with Cancer.

INTRODUCTION: Parents of children with cancer can experience increased emotional distress. This study aimed to assess the feasibility (i.e., reach, treatment fidelity, and social validity) of Taking Back Control Together (TBCT). METHODS: We assessed reach with the enrollment and dropout ratios. We assessed treatment fidelity using items from existing programs, controlling for the reliability of the items. For social validity, we used an adapted version of the Treatment Evaluation Inventory and compared means with theoretical cut-points. RESULTS: 42 participants enrolled in the intervention. The enrollment and dropout ratios were 39% and 38%, respectively. Treatment fidelity was 77.3-84.3% (95%CI 75.3-86%). Acceptability (M = 90%), satisfaction (M = 87%), and relevance (M = 82%) were significantly positive. CONCLUSION: This study suggests that certain elements of TBCT need to be reassessed before the intervention is pilot tested. Although reach was likely impacted by the COVID-19 pandemic, it could be improved with some modifications to the intervention.

Do problem-solving skills help mitigate emotional distress through perceived control and self-efficacy in parents of children with cancer?

INTRODUCTION: Parents of children with cancer face psychological challenges that can result in significant distress. It has been found that problem-solving (PS) could mitigate emotional distress (ED) in this population, but mechanisms of this relation are poorly understood. This study aimed to assess whether there is a link between PS and ED through perceived control and self-efficacy. METHODS: We included 119 parents (67 mothers, 52 fathers, including 50 couples) whose child was diagnosed with cancer. We evaluated whether PS was associated with ED through perceived control and self-efficacy in couples of parents. RESULTS: We found no direct association between PS and ED (ß = -0.01, p = 0.92). Our results indicated a significant indirect effect between ED and PS with perceived control as the intermediary variable (ß = -0.24, p < 0.001, 95% CI [-0.41, -0.11]). However, there was no indirect association between ED and PS with self-efficacy as the intermediary variable (ß = -0.04, p = 0.26, 95% CI [-0.11, 0.09]). The effect size was large in magnitude (R2  = 0.59 for ED). CONCLUSION: The mitigating role of PS on ED is better explained by an enhanced experience of control than by improved self-efficacy. Future interventions should directly target the action mechanism behind PS and ED in both mothers and fathers by targeting their perceived control.

Cancer-related fatigue: scoping review to synthesize a definition for childhood cancer survivors.

CONTEXT: There is no universal definition of cancer-related fatigue (CRF) specific to childhood cancer survivors, despite this population facing unique long-term side effects from their cancer. We aimed to synthesize and combine existing definitions of CRF specific to this context to inform on the necessity of a panel of experts to formulate a new definition of CRF for childhood cancer survivors. METHODS: The literature search was performed in various databases. Titles, abstracts, and keywords were screened by two researchers to confirm eligibility. The data extraction process was performed by two researchers. Our search was conducted in various databases. RESULTS: Thirty articles were included in the qualitative analysis. Two coders reached consensus on 14 codes. The thematization process produced 4 themes: frequency, context, attributes, and consequences of CRF. These themes were used to synthesize a definition of CRF, as follows: "In childhood cancer survivors, cancer-related fatigue is a common late effect of cancer and cancer treatments. It is characterized by a subjective, persistent, and multidimensional experience that differs from normal fatigue in the physical, emotional, and/or cognitive spheres. Cancer-related fatigue may have a variety of negative consequences including a reduced quality of life and level of functioning, a lack of vigor, work difficulties, relationship issues, and emotional distress." CONCLUSION: A definition of CRF applicable to childhood cancer survivors is timely to organize research efforts and design appropriate interventions. The proposed definition is a first step towards the formulation of a new definition of CRF specific to childhood cancer survivors by experts.

Abnormal HDL lipid and protein composition following pediatric cancer treatment: an associative study.

BACKGROUND: Long-term childhood cancer survivors (CCS) are at high risk of having dyslipidemia including low high density lipoprotein cholesterol (HDL-C). However, little is known about the prevalence of low HDL-C and the impact of therapy exposure on HDL composition early after treatment is terminated. METHODS: This associative study included 50 children and adolescents who had completed their cancer treatments (< 4 years). Clinical characteristics (demographic, diagnosis, treatment, anthropometric parameters), fasting plasma lipids, apoliporoteins (Apo) A-I and composition of HDL fractions (HDL2 and HDL3) were assessed. Data were stratified according to the presence of dyslipidemia and median doses of therapeutic agents and compared using Fisher exact or Mann-Whitney tests. Univariate binary logistic regression analyses were carried out to evaluate the associations between the clinical and biochemical characteristics and having low HDL-C. Composition of HDL2 and HDL3 particles was assessed in a sub-group of 15 patients and compared to 15 age- and sex-matched healthy controls using Wilcoxon paired test. RESULTS: Of the 50 pediatric cancer patients included in this study (mean age: 11.30 ± 0.72 y; mean time since end of treatment: 1.47 ± 0.12 y; male: 38%), 8 had low HDL-C (16%), all of which were adolescent at diagnosis. Higher doses of doxorubicin were associated with lower HDL-C and Apo A-I levels. In hypertriglyceridemic patients and compared to normolipidemics, triglycerides (TG) content was greater in HDL2 and HDL3 fractions whereas esterified cholesterol (EC) content was lower in HDL2. Enrich TG content of HDL3 and lower EC of HDL2 was found in patients exposed to ≥ 90 mg/m2 doxorubicin. Factors positively associated with the risk of having low HDL-C were age, being overweight or obese and exposure to doxorubicin ≥ 90 mg/m2. Compared to healthy controls, a sub-group of 15 patients showed higher TG and free cholesterol (FC) content of HDL2 and HDL3 and lower EC content in HDL3. CONCLUSIONS: Overall, we found abnormalities in HDL-C and Apo A-I levels and in HDL composition early after pediatric cancer treatment that are influenced by age, overweight or obesity status and exposure to doxorubicin.

Contribution of Fatigue to Cognitive Dysfunction in Childhood Acute Lymphoblastic Leukemia Survivors.

Late effects such as neurocognitive issues and fatigue have been reported in childhood acute lymphoblastic leukemia (cALL) survivors. Yet, their association is often poorly understood. In this study, we wished to (1) describe neurocognitive difficulties and fatigue in a well-characterized cohort of long-term cALL survivors and (2) explore the risk of having neurocognitive deficits as a function of fatigue. Childhood ALL survivors (N = 285) from three Canadian treatment centers completed the DIVERGT battery of cognitive tests and the PedsQL Multidimensional Fatigue Scale. We performed logistic regressions to assess the risk of a survivor to show cognitive deficits (<2.0 SD) depending on their fatigue levels. At least one cognitive deficit on the DIVERGT was present in 31% of participants. Domains primarily affected were working memory, fine motor skills, and verbal fluency. Sleep/rest fatigue in youths was higher than norms (d = 0.35). The risk for cognitive deficits increased independently with levels of fatigue in the domains of cognitive speed and flexibility, working memory, and verbal fluency. For every 10-point increase on general or sleep/rest fatigue on the 0-100 scale, there was a median +23-35% risk of showing a deficit among the 7 tasks significantly associated with fatigue. Fatigue may constitute a complementary target when searching to mitigate cognitive issues in this population.

Implications of Tumor Characteristics and Treatment Modality on Local Recurrence and Functional Outcomes in Children With Chest Wall Sarcoma: A Pediatric Surgical Oncology Research Collaborative Study.

OBJECTIVE: To determine the impact of tumor characteristics and treatment approach on (1) local recurrence, (2) scoliosis development, and (3) patient-reported quality of life in children with sarcoma of the chest wall. SUMMARY OF BACKGROUND DATA: Children with chest wall sarcoma require multimodal therapy including chemotherapy, surgery, and/or radiation. Despite aggressive therapy which places them at risk for functional impairment and scoliosis, these patients are also at significant risk for local recurrence. METHODS: A multi-institutional review of 175 children (median age 13 years) with chest wall sarcoma treated at seventeen Pediatric Surgical Oncology Research Collaborative institutions between 2008 and 2017 was performed. Patient-reported quality of life was assessed prospectively using PROMIS surveys. RESULTS: The most common diagnoses were Ewing sarcoma (67%) and osteosarcoma (9%). Surgical resection was performed in 85% and radiation in 55%. A median of 2 ribs were resected (interquartile range = 1-3), and number of ribs resected did not correlate with margin status ( P = 0.36). Local recurrence occurred in 23% and margin status was the only predictive factor(HR 2.24, P = 0.039). With a median follow-up of 5 years, 13% developed scoliosis (median Cobb angle 26) and 5% required corrective spine surgery. Scoliosis was associated with posteriorrib resection (HR 8.43; P= 0.003) and increased number of ribs resected (HR 1.78; P = 0.02). Overall, patient-reported quality of life is not impaired after chest wall tumor resection. CONCLUSIONS: Local recurrence occurs in one-quarter of children with chest wall sarcoma and is independent of tumor type. Scoliosis occurs in 13% of patients, but patient-reported quality of life is excellent.

Cardiometabolic Health After Pediatric Cancer Treatment: Adolescents Are More Affected than Children.

This cross-sectional study aimed at comparing the cardiometabolic (CM) health of children and adolescents and identifying factors associated with CM complications shortly after cancer treatment. Cancer-related characteristics, blood pressure (BP), anthropometry, and biochemical parameters were collected in 80 patients (56.3% female, mean age: 11.8 years; range: 4.5 - 21.0) a mean of 1.4 years following therapy completion. Compared to children, adolescents had higher mean z-score of insulin (-0.47 vs. 0.20; P = 0.01), HOMA-IR (-0.40 vs. 0.25; P = 0.02), waist-to-height ratio (0.36 vs. 0.84; P = 0.01), subscapular skinfold thickness (-0.19 vs. 0.47; P = 0.02), total body fat (-1.43 vs. 0.26; P < 0.01), and lower mean z-score of HDL-C (0.07 vs. -0.53; P < 0.01). Adolescents were more likely to have high BP (42% vs. 15%; P < 0.01), dyslipidemia (64% vs. 15%; P < 0.001), and cumulating ≥ 2 CM complications (42% vs. 2%; P < 0.001) than children. Adiposity indices (z-scores) were associated with high BP [odds ratio (OR) ranging from 2.11 to 4.09] and dyslipidemia (OR ranging from 2.06 to 4.34). These results suggest that adolescents have a worse CM profile than children shortly after therapy and that adiposity parameters are associated with CM complications, highliting the importance to develop intervention strategies targeting this population.

Quality of life in childhood advanced cancer: from conceptualization to assessment with the Advance QoL tool.

BACKGROUND: Advanced childhood cancer, a condition with no available cancer-focused treatment options, greatly impacts Quality of Life (QoL). We need appropriate assessment strategies to select adapted treatment targets, improve care and optimize communication. Our first goal was to identify the domains of patients' QoL by combining for the first time the perspectives of patients and parents with previously collected reports in professionals. Our second goal was to develop a simple QoL assessment tool and optimize its format and content for use in the childhood advanced cancer population. METHODS: To identify QoL domains, we conducted qualitative interviews with 7 young patients (4 girls, 3 boys, aged 13 ± 4 yrs) and 9 parents (7 mothers, 2 fathers) from our treatment centre. We used inductive thematic content analysis to code and categorize respondents' viewpoints. The first version of the tool (Advance QoL) was then drafted, and structured feedback was collected through interviews and a survey with 15 experts. We computed content validity indices. RESULTS: Apart from the physical, psychological, and social domains, participants insisted on four original themes: autonomy, pleasure, the pursuit of achievement, and the sense of feeling heard. This was in line with the categories found in a preliminary study involving professionals (PMID: 28137343). Experts evaluated the tool as clear, relevant, acceptable, and usable. They formulated recommendations on instructions, timeframe, and item formulations, which we implemented in the refined version. CONCLUSIONS: Advance QoL is an innovative tool targeting key life domains in childhood advanced cancer. It is focused on preserved abilities and targets of care. The refined version is appropriate for adult respondents within families and professionals. Future studies will develop versions for young ages to collect the experience of patients themselves. This will open on future reliability, validity, sensitivity, and implementation studies.

Screening for distress in pediatric cancer survivors: A systematic comparison of one-step and two-step strategies to minimize detection errors.

BACKGROUND: Childhood cancer survivors should be routinely screened for psychological distress. However, existing screening tools promoted by cancer care institutions, such as the Distress Thermometer (DT) generate high rates of errors. The aim of this study is to help refining strategies of screening psychological distress in this population by exploring two-step methods combining the DT on step #1 with one question on step #2. PROCEDURE: Data from 255 survivors of childhood acute lymphoblastic leukemia aged 13-40 years were analyzed (38% 13-18 years, 62% 19+ years, 53% females). We used the DT on step #1 and the individual emotion items from the Pediatric Quality of Life Questionnaire (PedsQL) on step #2, to detect distress, depression and anxiety as measured by standard instruments. We compared sensitivity, specificity, negative and positive predictive values, Youden index, and clinical utility indices, in newly developed two-step strategies. RESULTS: The best two-step strategies to screen anxious-depressive distress were DT ≥ 2 on step #1, with the item of Sadness on step #2, and DT ≥ 2 combined with the item of Concerns. Two-step strategies outperformed the DT alone on the correct identification of distressed survivors. However, two-step strategies did not outperform the DT used alone on the correct detection of no distressed survivors. Results were similar when predicting depression or anxiety alone. CONCLUSION: Completing the DT with one single question on emotions from the PedsQL may minimize the number of participants falsely identified as distressed, which could be particularly pertinent in resource-limited clinics.

Articulating viewpoints to better define and respond to the needs of adolescents and young adult survivors of pediatric brain tumors.

PURPOSE: Adolescents and young adult survivors of pediatric brain tumors (AYA-PBTS) often experience difficulties with social skills, pursuit of studies and employment. This study explored pediatric long-term survivors' perspective on their post-treatment needs and ways to improve resources and interventions. METHODS: We used an original method of three sequential focus group interviews by adding the perspectives of survivors (15-22 years), parents and health professionals (total N = 22). Participants were recruited using purposive sampling from the long-term follow-up clinic at a Canadian tertiary hospital. We used computer-assisted analysis to draw themes from each group and compare thematic content across groups. RESULTS: Categorization of participants' responses resulted in three domains: personal life, education and work. Participants mentioned the improvement of communication tools to facilitate access to timely information, the organization of counseling to improve employment integration, and tailoring interventions to optimize the return to daily activities in aftercare. Subsequent inductive analysis revealed three overarching trends among groups: multipurpose social networking, AYA-PBTS-specific information websites and transition tools and procedures. CONCLUSION AND IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: This study identified solutions for AYA-PBTS' specific needs in aftercare. This population needs up-to-date post-treatment information and refined outreach procedures. Future research should define and prioritize these suggested solutions.

Improving community and healthcare services for young adults living with cancer: Suggestions from a multiple stakeholder workshop.

Background and objectives: Despite the availability of healthcare and community services dedicated to cancer survivors, these remain underutilized by young adults living with cancer (YAC; aged 18-39). A workshop was organized in Montréal, Canada, to identify the needs of YAC during their post-treatment transition period and explore existing services dedicated to YAC. Methods: We recruited seventeen stakeholders (N = 17), including seven YAC, to participate in a one-day workshop to consult about best approaches and practices to meet the needs of YAC, post-treatment. All discussions were transcribed, and a thematic qualitative analysis was performed. Results: Two main findings were identified: differences and similarities among stakeholders about perceptions of post-treatment needs; and suggestions to meet YAC needs following treatment. Conclusions: Results demonstrate the importance of collaboration among multiple stakeholders, including YAC, when designing services for YAC. Results include suggestions to improve services available through community or healthcare centres.

A Portrait of Self-Reported Health and Distress in Parents Whose Child Died of Cancer.

Grieving a child following cancer is a substantially difficult task. The objectives of this research were: 1) to describe current quality of life (QoL), psychological distress and symptoms of grief of bereaved parents, and 2) to explore the role of possible contributors of QoL and psychological distress. Forty-six parents (32 mothers) of children who died of cancer were surveyed on their QoL, distress, and complicated grief. Data were analyzed using multiple linear regression. Parents had a high frequency of grieving symptoms (58%). Mothers reported more retrospective grief symptoms than fathers when describing the year after child death. Current lower mental well-being was associated with experiencing higher retrospective grief symptoms, a shorter period since child death, and being a father. Hence, parents experienced disturbances even long after child death. Mothers and fathers may present specificities that should be considered when developing supportive activities for this vulnerable population.

Difficulties encountered by physicians and mental health professionals in evaluating and caring for affective and behavioral problems in pediatric brain tumor survivors.

BACKGROUND: Pediatric brain tumor survivors (PBTS) present a high risk for emotional and behavioral disorders. When addressing these difficulties, differences in study designs; variety of and disagreement about diagnoses; and intricate links of emotional, behavioral, and cognitive issues may complicate the interpretation of studies and probably also the work of clinicians. We aimed to survey the difficulties perceived by physicians and mental health professionals in their practice and their interest in developing a new evaluative tool. METHODOLOGY: We surveyed 29 health professionals involved in the follow-up of this population. They completed questionnaires about their clinical practice (difficulties, needs, activities) and indicated diagnosis hypotheses and treatment plans on a clinical case developed for this study. RESULTS: Emotional and behavioral disorders were reported as difficult to assess for 93% of participants. The overlap of symptoms (90%) and the lack of an adapted diagnostic framework (90%) were the main reasons mentioned. Respectively 93%, 90%, and 65% of participants would at least "often" make referrals to psychological (93%), neuropsychological (90%), and psychiatric (65%) assessments and care. Family and group therapy were less common as was drug management. All participants were in favor of creating a tool to help with diagnosis and treatment. When responding to a clinical case, the heterogeneity of participants' responses highlighted their issues in diagnosing and managing these patients. CONCLUSION: This survey exemplifies the difficulties of health professionals related to the evaluation and management of affective and behavioral disorders experienced by PBTS. It underlines the need to help professionals by initiating systematic assessment strategies with this vulnerable population.

The impact of cancer on theory of planned behavior measures and physical activity levels during the first weeks following cancer diagnosis in children.

BACKGROUND: The theory of planned behavior (TPB) is used to document children's health behaviors linked to their physical activity. The TPB model and its components have been applied to comprehend the adoption of physical activity along informational and motivational parameters. Thus, this exploratory study aims to assess the evolution of children's physical activity levels (MVLPA) during the first weeks of their cancer, in addition to documenting the evolution of the TPB measures, self-reported fitness, and self-esteem in the physical domain to better understand children's physical activity behavior. METHODS: A total of 16 children (8 boys and 8 girls) with cancer answered psychosocial questionnaires at the diagnosis of cancer (time 1) and at 6 to 8 weeks (time 2) to assess the TPB measures, self-reported fitness, self-esteem in the physical domain, and their daily physical activities. RESULTS: A significant decrease of 41.2 min/days of daily MVLPA was observed between the time at cancer diagnosis (50.5 ± 32.8 min/days) and 6 to 8 weeks after the first interview (9.3 ± 9.1 min/days). We found that the time after the diagnosis of cancer negatively impacted children's TPB measures (mean in attitude, injunctive norms, identity, facilitating factors, self-confidence, and intention) and MVLPA levels. The TPB model explains 40% of the variance in MVLPA by the injunctive norms during the first weeks following cancer diagnosis in children. CONCLUSION: The findings of this study highlight the negative impacts of cancer on children's TPB measures, self-reported fitness, and self-esteem in the physical domain and self-reported MVLPA levels over 4 to 6 weeks following the diagnosis. These findings help to better understand the effect of cancer diagnosis on children's physical activity behavior.

Validity and reliability of the French version of the Pediatric Quality of Life Inventory™ brain tumor module.

INTRODUCTION: Assessing health-related quality of life (HRQoL) is an increasingly important aspect of standard care in pediatric oncology. Currently, there is a gap in the availability of French questionnaires to assess the quality of life of French-speaking pediatric brain tumor (PBT) patients, which has important implications in the care of this population. The first aim of this study was to translate the original English Pediatric Quality of Life Inventory™ (PedsQL) brain tumor module version into French. The second aim was to describe the stability, repeatability and convergent validity of the French PedsQL brain tumor module. METHODS: A total of 61 PBT patients were included in this study. Among them, 15 children and 20 parents participated in the translation process. As part of the validation study, 48 children and 48 parents answered the PedsQL brain tumor module twice, and the PedsQL generic core scales and the patient-reported outcomes measurement information system (PROMIS-37 pediatric profile v2.0) questionnaire were administered once to the participants. The mean age of the 25 boys and 23 girls was 8.3 ± 4.8 years. For temporal stability, we used intraclass correlation coefficients (ICCs), for repeatability, we used the Bland and Altman method to assess the accuracy at a 1-week interval, and we used Pearson's correlation coefficients for convergent validity between the PedsQL brain tumor module, PedsQL general module and the PROMIS. RESULTS: Temporal stability for the parent proxy-reports (average ICC = 0.98) and the child self-reports (average ICC = 0.98) were excellent. There was a high absolute stability over a 1-week interval for the parent proxy-reports (ICC > 0.96) and child self-reports (ICC > 0.96). Convergent validity between parent proxy-reports and child self-reports was supported by positive correlations for five subscales. Children reported higher scores in cognitive problems and the movement and balance parameters than their parents and reported lower scores on the worry parameter than their parents. CONCLUSION: The strong psychometric properties of the French version of the PedsQL brain tumor module indicate that it is a validate and reliable questionnaire to measure HRQoL in PBT patients. The availability of a French version of the PedsQL brain tumor module supports the wider dissemination of the assessment of HRQOL in PBT patients.

Getting ready for transition to adult care: Tool validation and multi-informant strategy using the Transition Readiness Assessment Questionnaire in pediatrics.

BACKGROUND: Transitioning from pediatric to adult healthcare can be challenging and lead to severe consequences if done suboptimally. The Transition Readiness Assessment Questionnaire (TRAQ) was developed to assess adolescent and young adult (AYA) patients' transition readiness. In this study, we aimed to (1) document the psychometric properties of the French-language version of the TRAQ (TRAQ-FR), (2) assess agreements and discrepancies between AYA patients' and their primary caregivers' TRAQ-FR scores, and (3) identify transition readiness contributors. METHODS: French-speaking AYA patients (n = 175) and primary caregivers (n = 168) were recruited from five clinics in a tertiary Canadian hospital and asked to complete the TRAQ-FR, the Pediatric Quality of Life Inventory™ 4.0 (PedsQL™ 4.0), and a sociodemographic questionnaire. The validity of the TRAQ-FR was assessed using confirmatory factor analyses (CFA). Agreements and discrepancies were evaluated using intraclass correlation coefficients and paired-sample t tests. Contributors of transition readiness were identified using regression analyses. RESULTS: The five-factor model of the TRAQ was supported, with the TRAQ-FR global scale showing good internal consistency for both AYA patients' and primary caregivers' scores (α = .85-.87). AYA patients and primary caregivers showed good absolute agreement on the TRAQ-FR global scale with AYA patients scoring higher than primary caregivers (ICC = .80; d = .25). AYA patients' age and sex were found to be contributors of transition readiness. CONCLUSIONS: The TRAQ-FR was found to have good psychometric properties when completed by both AYA patients and primary caregivers. Additional research is needed to explore the predictive validity and clinical use of the TRAQ-FR.

Learning through the experience of cancer survivorship: differences across age groups.

OBJECTIVE: To identify and describe challenges that contribute to experiential learning among cancer survivors across different age groups. RESEARCH APPROACH: Qualitative collaborative study. PARTICIPANTS: 27 cancer survivors. METHODOLOGICAL APPROACH: Participants were invited to explain the after-cancer challenges they learned from during six focus groups. Five were organized by age-group (15-18, 19-34, 35-44, 45-59, ≥ 60) and a mixed group was held to ensure the co-construction of findings with participants. Inductive content analysis was performed. FINDINGS: While learning to live with a chronic disease, participant's experiential learning appeared through four challenges: Searching for one's identity, Autonomy, Disruption of social roles and responsibilities, Reclaiming one's life. Particular aspects of challenges were identified across ages-groups and life courses. INTERPRETATION: Results indicate that psychosocial and health professionals should be sensitive to the fact that life courses are now diverse and not always associated with biological age. This has the potential to improve care by informing how these challenges affect the experience of cancer survivorship over time.

Inconsistencies between measures of cognitive dysfunction in childhood acute lymphoblastic leukemia survivors: Description and understanding.

OBJECTIVES: The frequency of cognitive difficulties in childhood cancer survivors varies according to the measurement strategy. The goal of this research is to (a) describe agreements and differences between measures of working memory and attention (b) identify contributors of these differences, such as emotional distress, affects, and fatigue. METHODS: We used data available for 138 adults successfully treated for childhood acute lymphoblastic leukemia (ALL) (PETALE cohort). Working memory and attention were assessed using subtests from the WAIS-IV and self-reported questionnaires (BRIEF-SR and CAARS-S:L). Potential contributors included emotional distress, anxiety, depression (BSI-18), affects (PANAS), and fatigue (PedsQL-MFS). We explored measurement agreements and differences using diagnostic indices and multivariate regression models. RESULTS: The frequencies of working memory and attention deficits were higher when using cognitive tests (15%-21%) than with self-reports (10%-11%). Self-reported questionnaires showed high specificity (median 0.87) and low sensitivity (median 0.10), suggesting they did not reliably identify positive cases on cognitive tests. We identified negative affectivity as a possible contributor to inconsistencies between self-report and test results. CONCLUSIONS: When measuring working memory and attention in childhood ALL survivors, cognitive test results and self-reports should not be considered equivalent. At best, self-report may be used for screening (high specificity), but not to assess prevalence in large samples. Self-reported difficulties are also probably influenced by the negative mood in this population.