Gea A. Huizinga

Psychosocial consequences for children of a parent with cancer: A pilot study

When cancer is diagnosed in a parent, this may also have consequences for the children. The purpose of this pilot study was to gain more insight into the psychosocial consequences for children of a parent with cancer, from the perspective of both the children and their parents. For this study, 14 families participated in semistructured interviews and completed standardized questionnaires. Interviews were tape-recorded, transcribed, and analyzed using content analysis techniques. No significant difference was found in behavioral and emotional problems between the children in these families and the normative sample. However, parents reported problems on a borderline and clinically elevated level in one third of the children, and three of seven children self-reported problems on these levels. The interview results showed that parents reported (temporary) behavioral problems in most children during the acute stage of their parents’ illness. Other problems, such as anxiety, sleeping disorders, and compulsive behavior, persisted for longer. Parents reported that their children had more problems than the children themselves reported. This finding was not supported by the quantitative analysis. The results from the Child Behavior Checklist and the Dutch version of the Family Adaptability and Cohesion Evaluation Scales showed that children of families with poor family functioning were more vulnerable. In particular, extremely high adaptation (chaotic) and extremely low family cohesion (disengaged) seemed related to the prevalence of emotional and behavioral problems in these children. Absence of home healthcare was an additional burden for adolescent children.

Parental cancer - Characteristics of parents as predictors for child functioning

The vulnerability of children when a parent is diagnosed with cancer may depend on a variety of variables. The current study examined the impact of characteristics of 180 parents diagnosed with cancer, along with 145 spouses, on the prevalence of emotional and behavioral problems in children.

Malnutrition in childhood cancer patients: A review on its prevalence and possible causes

PURPOSE To perform a systematic literature review for critical evaluation of prevalence and factors contributing to malnutrition in childhood cancer. METHODS A systematic search resulting in 46 suitable articles. RESULTS Due to lack of uniform criteria and adequate studies, the prevalence rates of malnutrition can only be estimated. Based on strengths and weaknesses of included references, prevalence rates are estimated to be 0-10% for leukemia, 20-50% for neuroblastoma, and 0-30% for other malignancies. Whether energy deficiency or inflammation contributed to malnutrition could not be confirmed because the occurrence of energy deficit (low energy intake, increased metabolic rate) or inflammation (related to cachexia) was not convincing. Also, a relationship between these factors and malnutrition was not studied. CONCLUSION Longitudinal studies are needed to determine which children are at risk of malnutrition, and to investigate the impact of energy deficiency and inflammation on the nutritional status and body composition of childhood cancer patients.

Emotional and behavioral problems in children of parents recently diagnosed with cancer: A longitudinal study

This study examines the prevalence of problems in children within four months after a parents cancer diagnosis (T1) and six (T2) and twelve months (T3) afterwards. Sixty-nine ill parents and 57 spouses completed the Child Behavior Checklist for 57 primary school (aged 4–11 years) and 66 adolescent children (aged 12–18 years). Adolescents completed the self-report version. Childrens functioning was compared to that of the norm group and a sample of families that were confronted with parental cancer between one to five years before study participation (retrospective study). Most children were reported as having a similar level as or fewer problems than was reported in the norm and retrospective studies. Reported problems decreased with time, but children who initially had more problems remained vulnerable during the year. Fathers and mothers highly agree in their perception of childrens behavior, with the exception of adolescent daughters’ behavior. Agreement between mothers and adolescent daughters was high, whereas agreement between fathers and adolescent sons and daughters, and mothers and adolescent sons was low to moderate. The outcomes suggest that most children do not experience problems shortly after the parents diagnosis and were functioning over time on a level equal to or better than that of their peers. Differences in informants perceptions appear and remain of interest.

Decision-making process in patients before entering phase III cancer clinical trials: a pilot study.

The present study was performed to gain insight into the decision-making process that patients go through when asked to participate in a cancer clinical trial. Fourteen cancer patients entered a pilot study concerning decision making. They were interviewed in a semistructured manner after consenting or refusing to participate in a randomized phase III clinical trial concerning chemotherapy or immunotherapy. Results from this study showed that patients, after receiving information from the medical oncologist, oncology nurse, or both, decide about participation instantaneously. This means that time for procedural soundness has not been used, which raises questions about the normative quality of the decision.

Temperament as a predictor of internalising and externalising problems in adolescent children of parents diagnosed with cancer.

ObjectiveThis study examined the relationship between temperament and internalising and externalising problems among children of parents diagnosed with cancer, beyond the effects of socio-demographics, illness-related variables and life events.Materials and methodsThree hundred and forty adolescent children and their 212 parents diagnosed with cancer participated. Children and parents completed the Youth Self Report and the Child Behaviour Checklist, respectively. Children completed also the Early Adolescent Temperament Questionnaire.Main resultsDaughters of parents with cancer were reported as having more internalising problems than their counterparts did. Prevalence of problems did not depend on children’s and parents’ age or educational level. Recurrent disease and number of life events experienced by children and parents affected the problems reported. The most important temperament dimensions in the prediction of internalising problems in children were shyness and fear/worry, to a lesser extent, frustration and perceptual sensitivity (children only) and lower scores on pleasure intensity (parents only). Externalising problems were associated with effortful control and in children’s reports with frustration. Temperament seemed to be a more important predictor of problems reported by children than parents.ConclusionFindings suggest that temperament is useful in determining the relative vulnerability of children of parents who have been diagnosed with cancer. Social workers may help parents to recognise individual differences between children and to support children by using techniques that are compatible with the temperament of children.

Validity of self-reported data on pregnancies for childhood cancer survivors: a comparison with data from a nationwide population-based registry

STUDY QUESTION To what degree do records registered in the Netherlands Perinatal Registry (PRN) agree with self-report in a study questionnaire on pregnancy outcomes in childhood cancer survivors (CCSs)? SUMMARY ANSWER This study suggests that self-reported pregnancy outcomes of CCSs agree well with registry data and that outcomes reported by CCSs agree better with registry data than do those of controls. WHAT IS KNOWN ALREADY Many studies have shown that childhood cancer treatment may affect fertility outcomes in female CCSs; however, these conclusions were often based on questionnaire data, and it remains unclear whether self-report agrees well with more objective sources of information. STUDY DESIGN, SIZE, DURATION In an nationwide cohort study on fertility (inclusion period January 2008 and April 2011, trial number: NTR2922), 1420 CCSs and 354 sibling controls were invited to complete a questionnaire regarding socio-demographic characteristics and reproductive history. In total, 879 CCSs (62%) and 287 controls (81%) returned the questionnaire. PARTICIPANTS/MATERIALS, SETTING, METHODS The current validation study compared the agreement between pregnancy outcomes as registered in the PRN and self-reported outcomes in the study questionnaire. A total of 589 pregnancies were reported in CCSs, and 300 pregnancies in sibling controls, of which 524 could be linked to the PRN. MAIN RESULTS AND THE ROLE OF CHANCE A high intra-class correlation coefficient (ICC) was found for birthweight (BW) (0.94 and 0.87 for CCSs and controls, respectively). The self-reported BWs tended to be higher than reported in the PRN. For gestational age (GA), the ICC was high for CCSs (0.88), but moderate for controls (0.49). CCSs overestimated GA more often than controls. The Kappa values for method of conception and for method of delivery were moderate to good. Multilevel analyses on the mean difference with regard to BW and GA showed no differences associated with time since pregnancy or educational level. LIMITATIONS, REASONS FOR CAUTION Not all pregnancies reported could be linked to the registry data. In addition, the completeness of the PRN could not be assessed precisely, because there is no information on the number of missing records. Finally, for some outcomes there were high proportions of missing values in the PRN registry. WIDER IMPLICATIONS OF THE FINDINGS Our study suggests that questionnaires are a reliable method of data collection, and that for most variables, self-report agrees well with registry data. STUDY FUNDING/COMPETING INTEREST This work was supported by the Dutch Cancer Society (grant no. VU 2006-3622) and by Foundation Children Cancer Free. None of the authors report a conflict of interest. TRIAL REGISTRATION NUMBER NTR2922 http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=2922.

Long-term quality of life in adult survivors of pediatric differentiated thyroid carcinoma

Context Little is known about long-term quality of life (QoL) of survivors of pediatric differentiated thyroid carcinoma. Therefore, this study aimed to evaluate generic health-related QoL (HRQoL), fatigue, anxiety, and depression in these survivors compared with matched controls, and to evaluate thyroid cancer-specific HRQoL in survivors only. Design Survivors diagnosed between 1970 and 2013 at age ≤18 years, were included. Exclusion criteria were a follow-up <5 years, attained age <18 years, or diagnosis of DTC as a second malignant neoplasm (SMN). Controls were matched by age, sex, and socioeconomic status. Survivors and controls were asked to complete 3 questionnaires [Short-Form 36 (HRQoL), Multidimensional Fatigue Inventory 20 (fatigue), and Hospital Anxiety and Depression Scale (anxiety/depression)]. Survivors completed a thyroid cancer-specific HRQoL questionnaire. Results Sixty-seven survivors and 56 controls. Median age of survivors at evaluation was 34.2 years (range, 18.8 to 61.7). Median follow-up was 17.8 years (range, 5.0 to 44.7). On most QoL subscales, scores of survivors and controls did not differ significantly. However, survivors had more physical problems (P = 0.031), role limitations due to physical problems (P = 0.021), and mental fatigue (P = 0.016) than controls. Some thyroid cancer-specific complaints (e.g., sensory complaints and chilliness) were present in survivors. Unemployment and more extensive disease or treatment characteristics were most frequently associated with worse QoL. Conclusions Overall, long-term QoL in survivors of pediatric DTC was normal. Survivors experienced mild impairment of QoL in some domains (physical problems, mental fatigue, and various thyroid cancer-specific complaints). Factors possibly affecting QoL need further exploration.

Fertility studies in female childhood cancer survivors: selecting appropriate comparison groups

Little information is available on the use of appropriate comparison groups for studies investigating late effects of childhood cancer. Two comparison groups in a nationwide study on reproductive function and ovarian reserve in female childhood cancer survivors were recruited (The Dutch Childhood Oncology Group Long-Term Effects After Childhood Cancer Cohort Study). Experiences of this process are reported. Two types of comparison groups were used: sisters of participating survivors and controls from the general population. A total of 352 out of 580 (61%) of the participating survivors who had a sister gave permission to invite them for the study. The participation rate of sisters was much higher than control participants from the general population (74% versus 21%, respectively), whereas considerably more effort was involved in recruiting controls from the general population. Participants in this group were significantly older and more highly educated than sister controls (P < 0.001 for both groups). No significant differences were observed between both types of comparison groups in several fertility-related characteristics, suggesting minimal bias owing to selective participation. Researchers setting up a study to investigate late effects among survivors of childhood cancer should carefully consider the advantages and disadvantages of using various types of comparison groups.

Psychosocial development in survivors of childhood differentiated thyroid carcinoma: a cross-sectional study

Objective The impact of childhood differentiated thyroid carcinoma (DTC) on psychosocial development has not yet been studied. The aim of this study was to evaluate the achievement of psychosocial developmental milestones in long-term survivors of childhood DTC. Design and methods Survivors of childhood DTC diagnosed between 1970 and 2013 were included. Reasons for exclusion were age <18 or >35 years at follow-up, a follow-up period <5 years or diagnosis with DTC as a second malignant neoplasm. Survivors gathered peer controls of similar age and sex (n = 30). A comparison group non-affected with cancer (n = 508) and other childhood cancer survivors (CCS) were also used to compare psychosocial development. To assess the achievement of psychosocial milestones (social, autonomy and psychosexual development), the course of life questionnaire (CoLQ) was used. Results We included 39 survivors of childhood DTC (response rate 83.0%, mean age at diagnosis 15.6 years, and mean age at evaluation 26.1 years). CoLQ scores did not significantly differ between survivors of childhood DTC and the two non-affected groups. CoLQ scores of childhood DTC survivors were compared to scores of other CCS diagnosed at similar ages (n = 76). DTC survivors scored significantly higher on social development than other CCS, but scores were similar on autonomy and psychosexual developmental scales. Conclusions Survivors of childhood DTC showed similar development on social, autonomy, and psychosexual domains compared to non-affected individuals. Social development was slightly more favorable in DTC survivors than in other CCS, but was similar on autonomy and psychosexual domains.