Parents' experiences with sequencing of all known pediatric cancer predisposition genes in children with cancer.

PURPOSE: Germline DNA sequencing is increasingly used within pediatric oncology, yet parental experiences remain underexplored. METHODS: Parents of children undergoing cancer predisposition gene panel sequencing (143 genes) were surveyed before and after disclosure of results. Questionnaires assessed knowledge, expectations, worries, satisfaction, and regret. Next to descriptives, linear mixed models and generalized mixed models were utilized to explore factors associated with knowledge and worries. RESULTS: Out of 325 eligible families, 310 parents (176 mothers and 128 fathers of 188 families) completed all after-consent questionnaires whereas 260 parents (150 mothers and 110 fathers of 181 families) completed all after disclosure questionnaires. Most parents hoped their participation would benefit others, although individual hopes were also common. Sequencing-related worries were common, particularly concerning whether their child would get cancer again, cancer risks for family members and psychosocial implications of testing. Parental satisfaction after disclosure was high and regret scores were low. Lower education was associated with lower knowledge levels, whereas foreign-born parents were at increased risk of experiencing worries. CONCLUSION: Germline sequencing of children with cancer is generally well received by their parents. However, careful genetic counseling is essential to ensure that parents are adequately informed and supported throughout the process.

Efficacy of Op Koers Online, an online group intervention for parents of children with cancer: Results of a randomized controlled trial.

OBJECTIVE: Parents of children with cancer are at risk for developing psychosocial problems. The present study aims to evaluate the effect of an online group intervention (Op Koers Online, in English: On Track Online) on psychosocial wellbeing and coping skills. METHODS: Parents of a child with cancer (diagnosis <5 years ago) participated in a randomized controlled trial. In six consecutive (and one booster-) protocolled sessions in an online chatroom, trained psychologists and social workers taught coping skills using cognitive behavioral and acceptance and commitment techniques. Questionnaires assessed anxiety, depression, distress, situation-specific emotional reactions and coping skills (Op Koers Questionnaire/Cognitive Coping Strategies Scale Parent Form) and evaluated the intervention. Linear mixed-model analyses were performed to detect differences between the conditions in changes over time; T0-T1 and T0-T2 (6-week and 6-month follow-up), and to detect changes in scores T2-T3 (12-month follow-up) for the intervention group only. RESULTS: 89 parents were included in analyses (mean age 41.9 years, 86% female, 62%/38% post/during treatment of their child). Beneficial intervention effects (p < 0.05) were found at T1 for anxiety, depression, distress, loneliness and relaxation, and at T2 for anxiety, uncertainty and relaxation. In the intervention condition, scores did not change from T2 to T3, except loneliness that decreased and relaxation that improved. All effect sizes were small to medium (ß = -0.21 to 0.46). Parents were generally positive about the intervention. CONCLUSIONS: Op Koers Online for parents of children with cancer has a positive effect on psychosocial wellbeing and the coping skill relaxation. Implementation is recommended to prevent psychosocial problems. CLINICAL TRIAL REGISTRATION: Dutch Trial Register https://onderzoekmetmensen.nl/en NL73763.041.20.

Support needs of Dutch young adult childhood cancer survivors.

BACKGROUND: Studies about support needs of young adult childhood cancer survivors (YACCS) previously focused mainly on information needs. This study assessed support needs and associated factors (sociodemographic, medical, and psychosocial functioning) in Dutch YACCS. METHODS: YACCS (aged 18-30, diagnosed ≤ 18 years, time since diagnosis ≥ 5 years) cross-sectionally filled out a questionnaire regarding their need for various types of support (concrete information, personal counseling, and peer contact) in eight domains (physical consequences of childhood cancer, social-emotional consequences, relationships and sexuality, fertility, lifestyle, school and work, future perspective, insurance and mortgage), and questionnaires assessing health-related quality of life (PedsQL-YA), anxiety and depression (HADS), and fatigue (CIS-20R). Descriptive statistics were used to describe support needs. Linear regression was used to identify characteristics associated with support needs. RESULTS: One hundred fifty-one YACCS participated (response = 40%). Most YACCS reported a need for support in one or more domains (88.0%, N = 133). More than half of the participants reported a need for concrete information in the domains lifestyle, fertility, and physical consequences of childhood cancer and 25-50% in the domains insurance and mortgages, future perspective, and social-emotional consequences of childhood cancer. In the domains lifestyle and physical as well as emotional consequences of childhood cancer, 25-50% reported a need for counseling. Overall need for support was positively associated with middle (ß = 0.26, p = 0.024) and high (ß = 0.35, p = 0.014) compared to low educational attainment and (sub)clinical anxiety (ß = 0.22, p = 0.017), and negatively associated with social functioning (ß = - 0.37, p = 0.002) in multivariate analyses. CONCLUSION: YACCS report the strongest need for support, for concrete information, in the domains lifestyle, fertility, and physical consequences of childhood cancer. Associated factors were mostly socioeconomic and psychosocial in nature. Psychosocial care should be an integral part of survivorship care for YACCS, with screening for psychosocial problems, information provision including associated emotional consequences and support if necessary (psycho-education) and tailored interventions, and adequate referrals to more specialized care if necessary.

A vulnerable age group: the impact of cancer on the psychosocial well-being of young adult childhood cancer survivors.

PURPOSE: This study aimed to increase our understanding of the psychosocial well-being of young adult childhood cancer survivors (YACCS) as well as the positive and negative impacts of cancer. METHODS: YACCS (aged 18-30, diagnosed ≤ 18, time since diagnosis ≥ 5 years) cross-sectionally filled out the "Pediatric Quality of Life Inventory Young Adults" (PedsQL-YA), "Hospital Anxiety and Depression Scale" (HADS), and "Checklist Individual Strengths" (CIS-20R) to measure fatigue and survivor-specific "Impact of Cancer - Childhood Survivors" (IOC-CS), which measures the long-term impact of childhood cancer in several domains. Descriptive statistics (IOC-CS), logistic regression (HADS, CIS-20R), and ANOVA (PedsQL-YA, HADS, CIS-20R) were performed. Associations between positive and negative impacts of childhood cancer and psychosocial outcomes were examined with linear regression analyses. RESULTS: YACCS (N = 151, 61.6% female, mean age 24.1 ± 3.6, mean time since diagnosis 13.6 ± 3.8) reported lower HRQOL (- .4 ≤ d ≤ - .5, p ≤ .001) and more anxiety (d = .4, p ≤ .001), depression (d = .4, p ≤ .01), and fatigue (.3 ≤ d ≤ .5, p ≤ .001) than young adults from the general Dutch population. They were at an increased risk of experiencing (sub)clinical anxiety (OR = 1.8, p = .017). YACCS reported more impact on scales representing a positive rather than negative impact of CC. Various domains of impact of childhood cancer were related to psychosocial outcomes, especially "Life Challenges" (HRQOL ß = - .18, anxiety ß = .36, depression ß = .29) and "Body & Health" (HRQOL ß = .27, anxiety ß = - .25, depression ß = - .26, fatigue ß = - .47). CONCLUSION: YACCS are vulnerable to psychosocial difficulties, but they also experience positive long-term impacts of childhood cancer. Positive and negative impacts of childhood cancer were associated with psychosocial outcomes in YACCS. Screening of psychosocial outcomes and offering targeted interventions are necessary to optimize psychosocial long-term follow-up care for YACCS.

Adaptive behavior impaired in children with low-grade glioma.

BACKGROUND: Adaptive behavior, i.e., the performance on daily activities required for personal and social independence, is essential to estimate in children with low-grade glioma (LGG) since most of them are long-term survivors. Our aim was to investigate adaptive behavior in children with LGG. METHODS: In a cross-sectional study, adaptive behavior was assessed using the paper pencil version of the Parent Form of the Vineland Adaptive Behavior Scales 2nd edition (VABS-II) testing communication, daily living skills, social skills, and motor skills. Scores of children with LGG, younger than 20 years, and diagnosed between 2004 and 2014 were compared with family controls. Correlations between clinical variables and adaptive behavior were explored. RESULTS: Fifty-six children with LGG (median age, 12.1 years; 52% male) and 46 controls (median age, 11.0 years; 43% male) were included in the analyses. Compared with controls, the LGG group was more impaired on total adaptive behavior, communication, and motor skills and in the subdomain gross motor skills (effect sizes d, 0.64-0.86, P < 0.003). Younger age at diagnosis (r = -0.357, P < 0.01) and chemotherapy (r = -0.342, P < 0.05) were associated with poorer motor skills. Residual disease was associated with poorer total adaptive behavior (r = -0.282, P < 0.05). No other significant correlations were found. CONCLUSION: At the group level, adaptive functioning of children with LGG is impaired compared with family controls. Regular structured monitoring of adaptive behavior is recommended to be able to define the needs for tailored rehabilitation in daily life at home as well as at school.

Dutch norms for the Strengths and Difficulties Questionnaire (SDQ) - parent form for children aged 2-18 years.

BACKGROUND: Identification of children at risk for psychosocial problems is important to be able to provide supportive and tailored care at an early stage. Due to its brevity and wide age range, the Strengths and Difficulties Questionnaire (SDQ) Parent Form is an appropriate instrument for use in paediatric clinical practice as it facilitates assessment of psychosocial functioning from young childhood into adulthood. The aim of the present study was to provide Dutch normative data for the SDQ Parent Form. METHODS: A sample of 1947 parents with children aged 2-18 years was drawn from a large panel of a Dutch research agency, stratified on Dutch key demographics of the parents. The SDQ Parent Form assesses the child's Emotional symptoms, Conduct problems, Hyperactivity-Inattention, Peer problems and Prosocial behaviour. Summary scores can be calculated: Internalising, Externalising and Total difficulties. Internal consistency (Cronbach's alpha coefficient) and normative scores (mean, median, clinical cut-off scores) of the SDQ- Parent Form were calculated in four age-groups 2-3, 4-5, 6-11 and 12-18 years. Gender differences were tested with independent t-tests. RESULTS: A total of 1174 parents (60.3%) completed the SDQ. In the age-groups 2-3 and 4-5, norm scores are not available for Conduct problems and Peer problems due to insufficient internal consistency. In addition, in age-group 2-3, norm scores for Emotional symptoms and Internalising are not available because of insufficient internal consistency. In the age-groups 6-11 and 12-18, norm scores are available for all scales, with Cronbach's alpha coefficients 0.53-0.86. The comparison by gender revealed that boys had more behavioural problems than girls (0.000 < p < 0.048), most prevalent for Hyperactivity-Inattention, Peer Problems, Prosocial behaviour, Externalising and Total Difficulties. CONCLUSIONS: Dutch normative data by age-group and gender are now available for parent-reported SDQ scores in children aged 2-18 years. Due to insufficient internal consistency, normative scores for 2-5 year-old children could not be presented for several SDQ scales. Yet, the SDQ Total score provides a reliable indication of the psychosocial functioning of younger children. In case of high Total scores in children younger than 6 years, alternatively to scale scores, the answers on the individual items could yield useful clinical information about the child's problems.

Health-related quality of life, developmental milestones, and self-esteem in young adults with bleeding disorders.

BACKGROUND: The treatment of bleeding disorders improved in the last decades. However, the effect of growing up with bleeding disorders on developmental, emotional, and social aspects is understudied. Therefore, this study assesses HRQOL, developmental milestones, and self-esteem in Dutch young adults (YA) with bleeding disorders compared to peers. METHODS: Ninety-five YA (18-30 years) with bleeding disorders (78 men; mean 24.7 years, SD 3.5) and 17 women (mean 25.1 years, SD 3.8) participated and completed the Pediatric Quality of Life Inventory Young Adult version, the Course of Life Questionnaire, and the Rosenberg Self-Esteem Scale. Differences between patients with bleeding disorders and their peers, and between hemophilia severity groups, were tested using Mann-Whitney U tests. RESULTS: YA men with bleeding disorders report a slightly lower HRQOL on the total scale, physical functioning, and school/work functioning in comparison to healthy peers (small effect sizes). YA men with severe hemophilia report more problems on the physical functioning scale than non-severe hemophilia. YA men with bleeding disorders achieved more psychosexual developmental milestones than peers, but show a delay in 'paid jobs, during middle and/or high school.' A somewhat lower self-esteem was found in YA men with bleeding disorders in comparison to peers (small effect size). For YA women with bleeding disorders, no differences were found on any of the outcomes in comparison to peers. CONCLUSION: This study demonstrates some impairments in HRQOL and self-esteem in YA men with bleeding disorders. By monitoring HRQOL, problems can be identified early, especially with regard to their physical and professional/school functioning.

Health related quality of life in Dutch infants, toddlers, and young children.

BACKGROUND: The purpose of this study is to provide Dutch normative data and to assess internal consistency and known-groups validity for the TNO AZL Preschool Children Quality of Life (TAPQOL) and the acute version of the generic Pediatric Quality of Life Inventory (PedsQL 4.0) in Dutch young children aged 0-7 years. METHODS: Participants were selected from a panel of a large Dutch market research agency. A sample of 794 parents (response rate 61%, 39% fathers) of children (53% boys) from the general Dutch population, completed an electronic version of the TAPQOL (N = 227 infants aged 0-1 years) or PedsQL 4.0 (N = 293 toddlers aged 2-4 years and N = 274 young children aged 5-7 years). RESULTS: Except for the 'stomach' scale (α = .39), the TAPQOL showed acceptable to excellent internal consistency (α = .60-.88). The PedsQL 4.0 showed acceptable to excellent reliability in children aged 2-4 years (α = .60-.88) and in children aged 5-7 years (α = .76-.90). Children with a chronic health condition had lower scores than healthy children on 3 out of 12 domains of the TAPQOL (p = .001-.013) and on 2 out of 6 domains of the PedsQL 4.0 for children aged 2-4 years (p = .016-.04). The PedsQL 4.0 differentiated on all domains (p < .05) between children aged 5-7 years with and without a chronic health condition. CONCLUSION: In Dutch children aged 0-7 years old, HRQoL can be relialy measured with the TAPQOL and the PedsQL 4.0. However, it remains unclear whether these HRQoL instruments can distinguish between healthy children and children with a chronic health condition under the age of 5.

Moderators of the efficacy of a psychosocial group intervention for children with chronic illness and their parents: what works for whom?

OBJECTIVE: To investigate psychosocial characteristics of children and parents as predictors and moderators of the effect of a group intervention for children with chronic illness and their parents. METHODS: Data from a randomized controlled trial were used, including 194 children (8-18 years) who were assigned to a child-only intervention, a parent-child intervention, or a wait-list control group. Longitudinal multilevel regression analyses were used to test effects on change in parent and child reported internalizing and externalizing behavior problems. RESULTS: For children with a more disengaged coping style or lower self-worth and for children who experienced a more secure parent-child relationship, the parent-child intervention was more effective than the child-only intervention in reducing behavior problems. CONCLUSIONS: Children who are more "at risk" appear to gain more from participating in an intervention, especially if their parents are involved as well. However, the benefit of parents' involvement may depend on the quality of the parent-child relationship.

Anxiety and depression in mothers and fathers of a chronically ill child.

We aimed to determine the levels of anxiety and depression in mothers and fathers of a chronically ill child (0-18 years) and to study which parental and child variables are associated with anxiety and depression. In a cross-sectional design, anxiety and depression were assessed with the Hospital Anxiety and Depression Scale. Scores were compared to a Dutch reference group by analysis of variance and logistic regression analysis. Linear regression analyses were performed to examine which variables were associated with anxiety and depression. Mothers of a chronically ill child (n = 566) scored significantly higher than the reference group (p < .001) on anxiety (Mean 5.9 vs 4.8) and depression (Mean 4.5 vs 3.1). Fathers (n = 123) had higher depression scores (Mean 4.5 vs 3.6; p < .05), but fathers' anxiety scores were comparable to the reference group. The percentages of mothers in the clinical range of anxiety (31.8 vs 20.7 %, OR 2.03, 95 % CI 1.46-2.83) and depression (23.0 vs 12.0 %, OR 2.76, 95 % CI 1.84-4.13) were higher (p < .001) than in the reference group. No differences were found for fathers in the clinical range for anxiety and depression. Practical problems in daily life (a: ß = .33, d: ß = .25) and parenting stress (a: ß = .30, d: ß = .32) showed the strongest association with anxiety and depression for parents as a group. Illness-related characteristics of the child were not related. Parents of a chronically ill child, especially mothers, reported high levels of anxiety and depression. Awareness about parental anxiety and depression in pediatrics is important as well as targeted interventions.

Are survivors of childhood cancer with an unfavourable psychosocial developmental trajectory more likely to apply for disability benefits?

BACKGROUND: The aim of this study was to investigate whether an unfavourable psychosocial developmental trajectory while growing up with childhood cancer is related to a smaller likelihood of labour participation in adult life. METHODS: A total of 53 childhood cancer survivors (CCS) with and 313 CCS without disability benefits, and 508 peers from the general Dutch population (reference group) completed the Course of Life Questionnaire (CoLQ) about the achievement of psychosocial developmental milestones. Differences between the three groups were tested by conducting analysis of variance with contrasts (scale scores CoLQ) and logistic regression analysis (individual milestones). Effect sizes and odds ratios were calculated. RESULTS: Compared with the reference group, both CCS with and CCS without benefits reported lower scale scores with respect to social and psychosexual development. CCS with disability benefits had lower social (d = - 0.6; p < 0.001) and psychosexual (d = -0.4; p < 0.01) scale scores than the CCS without disability benefits. CCS with disability benefits scored less favourably (p < 0.01) than peers from the general population on 14 out of 22 psychosocial milestones whereas the number was only six for those without disability benefits. CONCLUSIONS: CCS with an unfavourable developmental trajectory while growing up were more likely to apply for disability benefits in adulthood than CCS with a more favourable development. Early recognition and support are warranted. Further research is needed on risk factors of application for disability benefits. In addition, research should show whether stimulating the achievement of developmental milestones while growing up will create conditions for a better labour market position.

Chronic fatigue in childhood cancer survivors is associated with lifestyle and psychosocial factors; a DCCSS LATER study.

BACKGROUND: The purpose of this study was to determine factors associated with chronic fatigue (CF) in childhood cancer survivors (CCS). PATIENTS AND METHODS: Participants were included from the Dutch Childhood Cancer Survivor Study (DCCSS) LATER cohort, a nationwide cohort of CCS (≥5 years after diagnosis) and siblings as controls. Fatigue severity was assessed with the 'fatigue severity subscale' of the Checklist Individual Strength ('CIS-fatigue'). CF was defined as scoring ≥35 on the 'CIS-fatigue' and having fatigue symptoms for ≥6 months. Twenty-four parameters were assessed, categorized into assumed fatigue triggering, maintaining and moderating factors. Multivariable logistic regression analyses were carried out to investigate the association of these factors with CF. RESULTS: A total of 1927 CCS participated in the study (40.7% of invited cohort), of whom 23.6% reported CF (compared with 15.6% in sibling controls, P < 0.001). The following factors were associated with CF: obesity [versus healthy weight, odds ratio (OR) 1.93; 95% confidence interval (CI) 1.30-2.87], moderate physical inactivity (versus physical active, OR 2.36; 95% CI 1.67-3.34), poor sleep (yes versus no, OR 2.03; 95% CI 1.54-2.68), (sub)clinical anxiety (yes versus no, OR 1.55; 95% CI 1.10-2.19), (sub)clinical depression (yes versus no, OR 2.07; 95% CI 1.20-3.59), pain (continuous, OR 1.49; 95% CI 1.33-1.66), self-esteem (continuous, OR 0.95; 95% CI 0.92-0.98), helplessness (continuous, OR 1.13; 95% CI 1.08-1.19), social functioning (continuous, OR 0.98; 95% CI 0.97-0.99) and female sex (versus male sex, OR 1.79; 95% CI 1.36-2.37). CONCLUSION: CF is a prevalent symptom in CCS that is associated with several assumed maintaining factors, with lifestyle and psychosocial factors being the most prominent. These are modifiable factors and may therefore be beneficial to prevent or reduce CF in CCS.

Health-related quality of life in Dutch adult survivors of childhood cancer: A nation-wide cohort study.

AIM: To investigate the health-related quality of life (HRQOL) of Dutch adult childhood cancer survivors (CCS) and to identify risk factors of impaired HRQOL. METHODS: Adult CCS (age >18, diagnosed <18, ≥5 years since diagnosis) from the Dutch LATER registry completed the Medical Outcome Study Short Form 36 (SF-36) to measure HRQOL and provided sociodemographic characteristics. Age-adjusted mean SF-36 scale scores of CCS were compared to the Dutch general population for men and women separately using t-tests, with effect size d. Multivariate logistic regression models were built to identify sociodemographic and cancer-related risk factors for impaired physical and mental HRQOL. RESULTS: Both male and female CCS (N = 2301, mean age = 35.4 years, 49.6% female) reported significantly (p ≤ .005) worse HRQOL than the general population on almost all scales of the SF-36 (-.11 ≤ d ≤ -.56). Largest differences were found on vitality and general health perceptions. Significant risk factors (p ≤ .05) for impaired physical HRQOL were female sex, older age at diagnosis, not having a partner, low educational attainment, disease recurrence and exposure to radiotherapy, specifically to lower extremity radiation. Odds ratios (ORs) ranged from 1.6 to 3.7. Significant risk factors for impaired mental HRQOL were age 26-35 years, male sex, not having a partner and low educational attainment. ORs ranged from 1.3 to 2.0. CONCLUSION: Adult CCS had worse HRQOL than the general population. CCS most at risk were those with low educational attainment and without a partner. Adult CCS could benefit from routine surveillance of their HRQOL. Special attention for CCS' vitality and health perceptions and beliefs is warranted.

Remarkable differences: the course of life of young adults with galactosaemia and PKU.

Although the need for insight in factors influencing the quality of life of patients with an inborn error of metabolism is recognized, psychological adjustment of adults with metabolic diseases has not been properly studied. Adult patients with PKU were demonstrated not to differ from healthy controls in terms of their course of life (CoL) and health-related quality of life (HRQoL). However, adults with galactosaemia had a lower HRQoL with significant lower scores on the domains of cognitive and social function. This study investigated the CoL and the social demographical outcomes in these young adults with galactosaemia, and compared them with the general population and with PKU patients. A total of 15 (88%) adult patients with classical galactosaemia participated in this study. Classical galactosaemia patients had a delayed social and psychosexual development compared to their peers from the general population and to PKU patients. Also, they were significantly less frequently married or living together and significantly less frequently employed than the general population. Our study shows a stark contrast between patients with galactosaemia and patients with PKU, although both are diagnosed in the neonatal period and need life-long dietary restrictions. The observed difference is likely due to the long-term somatic complications frequently seen in galactosaemia and thus not due to the burden of a chronic disease necessitating life-long dietary restrictions. We conclude that it is essential that parents and clinicians encourage children with galactosaemia to participate in peer-related activities in order to stimulate social performance, which may result in a more normal CoL.

A predictive model of health-related quality of life in young adult survivors of childhood cancer.

A predictive model of health-related quality of life in young adult survivors of childhood cancerThis study aimed to examine factors that affect survivors' health-related quality of life (HRQoL), using a theoretical model in which demographic and medical characteristics explain HRQoL mediated by course of life, coping and social support. In a cross-sectional design, 353 survivors aged 18-30 years completed questionnaires. Structural equation modelling was performed to investigate the relationships among the variables in the model and to test whether the model fitted the data. The model fitted the data closely: chi(2)(14) = 21.61, P = 0.087; root mean square error of approximation = 0.039, 90% confidence interval [0.00; 0.070]. The effect of medical and demographic characteristics on HRQoL was mediated by coping. Survivors having been treated with both chemotherapy and radiotherapy were most at risk for worse HRQoL because they suffer more from current health complaints and were less inclined to predictive and active coping. Screening survivors medically as well as psychosocially could help to identify patients with the greatest needs and direct interventions by which the follow-up care could be improved.

School-aged children after the end of successful treatment of non-central nervous system cancer: longitudinal assessment of health-related quality of life, anxiety and coping.

The aim of the study was to investigate: (1) health-related quality of life (HRQoL) and anxiety in school-aged cancer survivors during the first 4 years of continuous remission after the end of treatment; and (2) correlations of disease-related coping with HRQoL and anxiety. A total of 76 survivors aged 8-15 years completed questionnaires about HRQoL, anxiety and disease-related cognitive coping at one to five measurement occasions. Their HRQoL was compared with norm data, 2 months (n = 49) and 1 year (n = 41), 2 years (n = 41), 3 years (n = 42) and 4 years (n = 27) after treatment. Through longitudinal mixed models analyses it was investigated to what extent disease-related cognitive coping was associated with HRQoL and anxiety over time, independent of the impact of demographic and medical variables. Survivors reported worse Motor Functioning (HRQoL) 2 months after the end of treatment, but from 1 year after treatment they did no longer differ from the norm population. Lower levels of anxiety were associated with male gender, being more optimistic about the further course of the disease (predictive control) and less searching for information about the disease (interpretative control). Stronger reliance on the physician (vicarious control) was associated with better mental HRQoL. As a group, survivors regained good HRQoL from 1 year after treatment. Monitoring and screening survivors are necessary to be able to trace the survivors at risk of worse HRQoL.

Hearing siblings' voices: exploring the (online) support needs of siblings of children with a chronic condition.

BACKGROUND: Siblings of children and adolescents with a chronic condition are at risk for developing psychosocial problems. It is important, that they receive appropriate support according to their needs. A sibling-specific module of an existing online intervention (Op Koers Online) for adolescents with a chronic condition might be an appropriate way to offer psychosocial support to siblings. The aim of the current study is to identify siblings' online support needs in order to develop a sibling-specific module of the existing Op Koers Online intervention. RESULTS: A total of 91 siblings (mean age 15.2 years, Standard Deviation 2.7) of children with a chronic condition completed an online questionnaire; nine semi-structured interviews were held additionally. Of all participants, 55% would like to initiate or increase contact with other siblings of children with a chronic condition and 46% of those were interested in an online chat course. The themes for online support considered most important were impact on daily life, worrying about brother's/sister's future, handling other people's reactions, and how attention is divided within the family. CONCLUSIONS: Siblings are interested in peer contact and online support. Op Koers Online for siblings seems to be a suitable intervention to offer online psychosocial support. The next step is to develop a sibling specific module of the Op Koers Online course, taking into account the identified themes.

The association between the behavior rating inventory of executive functioning and cognitive testing in children diagnosed with a brain tumor.

Pediatric brain tumor survivors (PBTS) suffer from cognitive late effects, such as deteriorating executive functioning (EF). We explored the suitability of the Behavior Rating Inventory of Executive Function (BRIEF) to screen for these late effects. We assessed the relationship between the BRIEF and EF tasks, and between the BRIEF-Parent and BRIEF-Teacher, and we explored the clinical utility. Eighty-two PBTS (8-18 years) were assessed with EF tasks measuring attention, cognitive flexibility, inhibition, visual-, and working memory (WM), and with the BRIEF-Parent and BRIEF-Teacher. Pearson's correlations between the BRIEF and EF tasks, and between the BRIEF-Parent and BRIEF-Teacher were calculated. The BRIEF-Parent related poorly to EF tasks (rs < .26, ps > .01), but of the BRIEF-Teacher the WM-scale, Monitor-scale, Behavioral-Regulation-Index, and Meta-cognition-Index, and Total-score (rs > .31, ps < .01) related significantly to some EF tasks. When controlling for age, only the WM scale and Total score related significantly to the attention task (ps < .01). The inhibit scales of the BRIEF-Parent and BRIEF-Teacher correlated significantly (r = .33, p < .01). Children with clinically elevated scores on BRIEF scales that correlated with EF tasks performed worse on all EF tasks (ds 0.56-1.23, ps < .05). The BRIEF-Teacher Total and Index scores might better screen general EF in PBTS than the BRIEF-Parent. However, the BRIEF-Teacher is also not specific enough to capture separate EFs. Solely relying on the BRIEF as a screening measure of EFs in BPTS is insufficient. Questionnaires and tasks give distinctive, valuable information.