Parental psychological distress and anxiety after a successful IVF/ICSI procedure with and without preimplantation genetic screening: follow-up of a randomised controlled trial.

BACKGROUND: Infertility treatment has an acknowledged psychological impact on women and their partners; however, information about the development of parental well-being after child birth is inconclusive. Preimplantation genetic screening (PGS) has been suggested to increase the efficacy of infertility treatments, but the effect it may have on parental well-being is unknown. AIM: To evaluate parental distress and anxiety at one and two years after successful infertility treatment and to explore variables that might affect parental outcome, including PGS and child behaviour. STUDY DESIGN: Follow-up of a randomised controlled trial (RCT) on the efficacy of PGS. SUBJECTS: Parents (n=101) that successfully underwent IVF/ICSI with or without PGS. OUTCOME MEASURES: At one and two years, parental distress and anxiety were assessed with the General Health Questionnaire 30 and State Trait Anxiety Inventory, respectively. At two years, child development and behaviour were assessed with the Dutch Bayley Scales of Infant Development-II and the Child Behaviour Checklist 1½-5, respectively. RESULTS: PGS had no effect on parental distress or anxiety. Child behaviour problems were associated with parental distress and anxiety. There was a main effect of time on parental distress, with distress levels decreasing over time. CONCLUSIONS: We found no objection to PGS related to parental psychological distress and anxiety. When parental psychological problems are present after infertility treatment, the results of this study could be useful to support counselling.

Applying Dutch and US versions of the BSID-II in Dutch children born preterm leads to different outcomes.

The aim of the present study was to evaluate whether the application of Dutch versus US test procedures and norms of the Bayley Scales of Infant Development - 2nd edition (BSID-II) leads to different developmental outcomes. The BSID-II was administered to 376 preterm infants (191 males, 185 females; mean gestational age 30wks [SD 2.7], mean birth-weight 1242g [SD 385]) at corrected ages of 6, 12, 24, and/or 36 months. Raw scores were calculated twice with US and Dutch test procedures. Raw scores as well as Mental Developmental Index (MDI) and Psychomotor Developmental Index (PDI) scores, calculated on the basis of Dutch versus US normative data, were compared. Small but statistically significant Dutch-US differences were found between raw scores. Large, clinically relevant Dutch-US differences were found for MDI and PDI scores, especially at 6 and 12 months. These differences were likely to have been caused by a bias in the Dutch normative data, although a slower developmental pace of Dutch children in general could also have a role. This study highlights the problems that can occur when using a test that was developed in another country, even when local standardization is available.

Long-term follow up of children exposed in utero to nifedipine or ritodrine for the management of preterm labour.

OBJECTIVE: To compare the long-term psychosocial and motor effects on children exposed in utero to nifedipine or ritodrine for the management of preterm labour. DESIGN: Randomised controlled trial. SETTING: Multicentre study in two university and one primary hospital in the Netherlands. POPULATION: In the original trial, 185 women were randomised to either nifedipine (n = 95) or ritodrine (n = 90). Of the 185 liveborn children, 171 survived (92%), and of these 102 (61%) were followed up at age 9-12 years. METHODS: Age-specific questionnaires were administered to the parent and teacher. Additional data were obtained from medical records. MAIN OUTCOME MEASURES: Questionnaires were used to assess the child's behavioural-emotional problems, quality of life (QoL), motor functioning, parenting distress and the child's education. RESULTS: Of the 171 eligible families, 102 (61%) agreed to participate and completed the questionnaires. Response was equal in the ritodrine group (n = 54 of 83 surviving children, 65%) compared with the nifedipine group (n= 48 of 88 surviving children, 55%). After controlling for differing perinatal characteristics at birth, no significant differences between the groups were detected with respect to long-term behaviour-emotional outcome, QoL, education, motor functioning or parenting distress. Psychosocial outcome was slightly better in the nifedipine group. CONCLUSIONS: The results do not support any differential postnatal effect of the tocolytic agents ritodrine or nifedipine on the child's long-term psychosocial and motor functioning. The slightly better outcome of children randomised in the nifedipine group is most likely due to more favourable perinatal outcomes in this group. These results merit further investigation in a larger group of survivors.

Sibling self-report, parental proxies, and quality of life: the importance of multiple informants for siblings of a critically ill child.

Assessment of quality of life (QoL) has thus far been a neglected approach in describing psychological adaptation in siblings of seriously ill children. The present results concern differences and correspondences between parent- and child-reported QoL in siblings of pediatric cancer patients, at 1 month and 2 years after the diagnosis in the ill child. A total of 83 Siblings aged 7-18 participated in the study at 1 month after the diagnosis; 57 of these siblings (69%) participated in follow-up assessment 24 months later. The parent and child form of the TNO-AZL Children's Quality of Life questionnaire (TACQoL) and the Child Behaviour Check List (CBCL) and Youth Self-Report (YSR) were used to assess QoL and behavioral problems in siblings. The General Health Questionnaire (GHQ) was used to assess parent mental health. Mean differences, correspondences between informants, and partial correlations with parent mental health were assessed at both measurement occasions. Correspondence between parent and child was low to moderate for most domains at both assessments. Low agreement was observed on several domains in our study group compared to reference data. Young siblings (ages 7-11) reported significantly more physical and motor problems at 1 and 24 months and less positive emotions at 24 months than their parents. Adolescent siblings reported more physical complaints at 1 month and more emotional and behavior problems (YSR) at both assessments, but also reported higher social QoL than their parents at 24 months. Parent psychological distress was negatively correlated with parent-reported physical QoL in the sibling. The findings suggest that siblings of children with cancer experience a more serious burden from the illness than is perceived by the parents. Physical complaints and emotional problems remain mostly unnoticed, although distressed parents are more focused on the child's physical health. These results imply that assessment of self-reported well-being is especially relevant in siblings of a critically ill child, to obtain a realistic image of siblings' QoL. Further studies on sibling QoL are needed.

One month after diagnosis: quality of life, coping and previous functioning in siblings of children with cancer.

BACKGROUND: The aim of the present study is to describe the quality of life (QoL) of siblings of children with cancer and to predict it according to their health before the diagnosis of cancer in the ill child and their ways of coping with the illness. METHODS: Participants were 83 siblings from 56 families-46 girls and 37 boys, aged 7-18. The assessment took place 1 month to 8 weeks after the diagnosis of cancer in the ill child. The siblings' QoL was assessed with the TNO-AZL children's quality of life questionnaire (TACQOL). Coping strategies were assessed with the Cognitive Coping Strategies Scale for siblings (CCSS-s). Physical problems and eating and sleeping problems that existed before the ill child was diagnosed were determined in a structured interview with the parents. RESULTS: A substantial number of siblings reported impaired cognitive and emotional QoL compared to the reference group. School-aged siblings (7-11 years) reported more trouble with motor functioning than peers. The coping strategy 'predictive control' (maintaining positive expectations regarding the illness) positively predicted siblings' QoL. The presence of health problems before diagnosis was negatively associated with siblings' QoL. Older siblings reported more negative emotions, while girls reported lower social QoL and reliance on 'interpretative control' (trying to understand the illness) was associated with fewer positive emotions. CONCLUSIONS: During the first 2 months after the diagnosis of cancer in a brother or sister, siblings have relatively lower QoL than peers. Health problems that existed before diagnosis may be a predictor of later adjustment problems. Positive expectations about the course of the illness appear to protect siblings from distress. Information about the illness is a delicate issue that requires parental guidance.

Quality of life and psychological adaptation in siblings of paediatric cancer patients, 2 years after diagnosis.

UNLABELLED: Several studies have been conducted on sibling psychosocial adaptation to cancer in a brother or sister, but little is known on how the long-term adaptation of siblings to the illness develops. The concept quality of life has primarily been applied in research on the effects of chronic illness on the affected patient, but has not yet been studied in siblings. AIMS: To investigate the prevalence of self-reported psychosocial problems in siblings of pediatric cancer patients, 2 years after the onset of the illness. MEASUREMENTS: Two Dutch quality of life questionnaires, the TACQOL and the DUCATQOL are used, as well as generic non-health-related measures of emotional and behaviour problems (CBCL-YSR) and anxiety (STAI-C). PARTICIPANTS: Participants were 103 siblings aged 7-18 years old. Fifty seven Siblings participated in a prospective and 46 in a retrospective study group. RESULTS: Siblings aged 7-11 report lower overall quality of life than children in the norm group. No differences in mean scores were found on any of the other domains that were investigated. When the prevalence of problems was investigated, however, relatively more siblings compared to normative data had scores in the impaired group based on the 20th percentile norm. A relatively high number of siblings aged 7-11 reported impaired emotional (42%), social (34%) and total quality of life (47%) (DUCATQOL) and physical problems (26%) (TACQOL). Relatively many adolescent siblings (26%) reported significant internalising problems on the CBCL-YSR. CONCLUSIONS: Although acute emotional distress reactions seem to have normalised in most siblings as has been suggested in the literature, emotional distress of having a brother or sister with cancer may continue beyond diagnosis for a subgroup of children. Young siblings seem to be affected in their quality of life, whereas a subgroup of adolescent siblings experience clinically relevant internalising problems. The results support the use of quality of life measures for siblings. Predictors of long-term adaptation in siblings need to be investigated.

Psychosocial functioning in siblings of paediatric cancer patients one to six months after diagnosis.

The aim of this study was to prospectively investigate the prevalence of and risk factors for psychosocial problems in siblings of paediatric cancer patients. One and 6 months after diagnosis, sibling self-reported anxiety, social-emotional problems and quality of life (QoL) were assessed, as were the predictor variables: sibling prediagnosis functioning, age and gender and the ill child's diagnosis. At 1 month, siblings reported a lower QoL and adolescent girls reported more emotional problems compared with peers. At 6 months, adolescent QoL remained relatively impaired. Over time, adolescent brothers reported fewer emotional and total problems and young girls reported decreased anxiety. No significant amelioration in QoL was found over time. The older the siblings were, the lower their observed QoL at both measurements and in several domains. The occurrence of life events predicted sisters' QoL at 1 month. Changes in sibling functioning were predicted by none of the investigated risk factors. Thus, QoL is impaired shortly after diagnosis. Adolescent siblings risk persisting problems in daily functioning. Further prospective research on other risk factors such as coping and family functioning over time is needed.

Supportive groups for siblings of pediatric oncology patients: impact on anxiety.

Childhood cancer can have a substantial emotional impact on the siblings of the sick child. In order to help these siblings adjust to the illness, supportive groups were started in 1994 at our medical center. The program is based on a model of psychosocial support; the aim of the group is to enhance control strategies and, thus, to reduce anxiety. It consists of five sessions and is offered to siblings aged 7-18. The study objective is to evaluate the effect of group participation on sibling anxiety. The State Trait Anxiety Inventory for Children was administered to 24 siblings before and after group participation. Results showed that siblings experience less anxiety after participating in the group. Before group participation, a majority of the siblings were more anxious compared with normal peers. The sibling's age and sex, whether the ill child is in treatment, survival perspective, and time since diagnosis were not related to anxiety reduction. The continuation of the group is supported by its positive impact on siblings. Results must nevertheless be interpreted cautiously, considering the small number of siblings participating in the study, the lack of a control group and the restriction to one outcome measure.

Adjustment of siblings to childhood cancer: a literature review.

Studies concerning sibling adjustment to childhood cancer and published since 1980 were reviewed. Sibling distress was described in terms of emotional, socio-behavioral, academic, physical and positive reactions. Secondly, characteristics and coping resources of siblings that are related to adjustment were summarized. Thirdly, the families' functioning, parental coping resources and family events that relate to adjustment were described. Finally, relevant aspects of the illness that may influence adjustment were described. Results of the 35 studies reviewed are summarized in a table containing general descriptors, methods and results. There are salient difficulties in comparison of the findings owing to variations in design, heterogeneity of the groups of siblings, diversity in sample size, and differences in conceptualizations of adjustment and coping. The lack of longitudinal studies, the precarious definitions and confounding of coping and adaptation, and the marginal role of siblings' coping efforts were identified as the most striking deficiencies in current research.