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.

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.

A community-based survey of posttraumatic stress disorder in the Netherlands.

In this study, the lifetime prevalence of stressful events and current posttraumatic stress disorder (PTSD) in the general adult population in the Netherlands were examined, and risk groups for PTSD were determined. A representative sample of 2,238 adults (>or=18 years) in the Netherlands completed digital questionnaires by computer-assisted self-interviewing. In total, 52.2% of the population reported at least one stressful event throughout their life. The estimated prevalence of current PTSD in the total population was 3.8%. Rape and physical assault were the stressful events most likely to be associated with PTSD, witness of injury the least likely. Stressful medical events were moderately associated with PTSD. Prevalence of PTSD was elevated among single women and middle-aged men.

Quality of life, developmental milestones, and self-esteem of young adults with congenital hypothyroidism diagnosed by neonatal screening.

CONTEXT: With advances in the treatment of congenital hypothyroidism (CH), the neuropsychological functioning of CH patients is considerably improved. Although much is written about cognitive and motor development, little is known about emotional and social consequences for patients growing up with CH, diagnosed by neonatal screening. OBJECTIVES: The objectives of the study were to: 1) compare health-related quality of life (HRQoL), developmental milestones also called course of life (CoL), sociodemographical outcomes, and self-esteem of CH patients with the general population; and 2) explore whether severity of CH was related to these outcomes. DESIGN/SETTING/PATIENTS: A total of 69 young adults with CH, born in The Netherlands in 1981-1982, completed the "TNO-AZL Questionnaire for Adult's Health related Quality of Life" questionnaire, the CoL survey (developmental milestones and sociodemographical outcomes), and a self-esteem questionnaire. MAIN OUTCOME MEASURES: HRQoL, CoL, social demographical outcomes, and self-esteem in young adults with CH were determined. RESULTS: CH patients are more often at risk for HRQoL impairment and reported lower HRQoL on several domains (cognitive functioning, P < 0.0001; sleeping, P < 0.004; pain, P < 0.0001; daily activities, P < 0.004; vitality, P < 0.0001; aggressiveness, P < 0.0001; and depressive moods, P < 0.0001) compared with healthy adults. Patients reported a lower self-esteem (P < 0.005) and had a delayed CoL on the domain of social development (P < 0.016). There were no significant within-group differences between the severity groups for HRQoL, CoL, and self-esteem. CONCLUSIONS: Negative consequences in terms of HRQoL, development, and self-esteem are prevalent in young adults with CH. Health care physicians should be attentive to these consequences and provide additional support (emotional and educational guidance) if necessary.

Intellectual and motor development of young adults with congenital hypothyroidism diagnosed by neonatal screening.

CONTEXT: Long-term follow-up data on cognitive and motor functioning in adult patients with congenital hypothyroidism, diagnosed by neonatal screening, are scarce. Hence, it is still unclear whether the frequently reported cognitive and motor deficits observed during childhood persist in adulthood. OBJECTIVE: The objective of this study was to examine cognitive and motor functioning in young adults with congenital hypothyroidism, born in the first 2 yr after the introduction of the Dutch neonatal screening program. DESIGN/SETTING/PATIENTS: Seventy patients were tested (mean age, 21.5 yr); 49 of them were previously tested at 9.5 yr. The median age at the start of treatment was 28 d (range, 4-293 d). Congenital hypothyroidism was classified as severe, moderate, or mild, according to pretreatment T(4) concentrations. MAIN OUTCOME MEASUREMENT: The main outcome measurement was the influence of the severity of congenital hypothyroidism and age at which T(4) supplementation was started on cognitive and motor outcome. RESULTS: Patients, particularly those with severe congenital hypothyroidism, had significantly higher (i.e. worse) motor scores (total score, 7.8; ball skills, 2.0; balance, 4.1) compared with controls (total score, 3.2; ball skills, 0.7; balance, 1.1), and lower full-scale (95.8), verbal (96.4), and performance (95.6) intelligence quotient (IQ) scores than the normal population. No significant change in IQ from childhood to adulthood was found, and for the majority of patients, motor score classification remained the same. The severity of congenital hypothyroidism, but not the starting day of treatment, was correlated with IQ and motor scores. CONCLUSIONS: It is concluded that the severity of congenital hypothyroidism, but not the timing of treatment initiation, is an important factor determining long-term cognitive and motor outcome. Clearly, detrimental effects on developmental outcome in patients with congenital hypothyroidism persist over time.

Children with cancer.

Some specific aspects of communication in pediatric oncology will be outlined in this chapter. These include openness about the disease, which has become increasingly important. Furthermore, the law of double protection, a self-protective strategy used by children, parents, and hospital staff, will be sketched out. It is very striking that protection is often achieved through protection of the other. Several examples of this strategy will be presented. Finally, attention will be paid to communication about death in the palliative phase.

Information about diagnosis and prognosis related to anxiety and depression in children with cancer aged 8-16 years.

The aim of this study was to test the hypothesis that being openly informed about the diagnosis and prognosis benefits the emotional well-being of children with cancer. A stratified sample of 56 children with cancer aged 8-16 years and their parents participated. The parents were interviewed about the information they had given to their child. Self-report questionnaires were administered to the children measuring anxiety and depression. Children who received open information about their diagnosis and prognosis at the initial stage of the disease showed significantly less anxiety and depression. Our findings suggest that parents should be advised to inform their child with cancer openly and soon after the initial diagnosis. Physicians should offer help to the parents in dealing with the difficult task of confronting the child with the diagnosis, prognosis and treatment.

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.

Emotions, coping and the need for support in families of children with cancer: a model for psychosocial care.

In the case of childhood cancer, the personal threats are severe for both the child, the parents and other family members. For the child, there is the threat to physical integrity, safety, security, and above all, to life. For the parents, there is the threat of losing the child. However, a number of studies have shown that psychopathological disturbances are rarely found in children with cancer or their parents. We may conclude from this that most children and parents use coping strategies that protect them from developing psychopathology. In organising support for families with a child with cancer, much can be learned from children's and parent's perceptions and reactions. When problems of adjustment arise, a thorough analysis of how children and parents perceive their situation, as well as an extensive analysis of their coping efforts, is necessary to direct effective supportive actions. A psychosocial support model is proposed which can be helpful in interpreting these emotions and coping strategies.

Use of alternative treatment in pediatric oncology.

The use of alternative treatment along with conventional cancer therapy is very popular. However, little is known about the use of alternative treatment in pediatric oncology. A study to determine which medical and demographic characteristics distinguish users from nonusers was conducted in a pediatric oncology sample of children with different survival perspectives. The parents of 84 children with cancer (43 patients in first continuous remission and 41 patients who had suffered a relapse or second malignancy) participated in the study and were surveyed with respect to the use of alternative treatment. The survival perspective appeared to be the most important variable distinguishing users of alternative treatment from nonusers. Twenty-six families (31%) had used or were using alternative treatment, of which 19 were families of children with cancer who had suffered a relapse (46%), and 7 were families of children with cancer in remission (16%). The most common types of alternative treatment used were based on homeopathy and anthroposophy (treatments based on autonomous medical concepts). Because of the finding that lower survival perspective is related to the use of alternative treatment, the use of alternative treatment conceivably could be a coping strategy based on illusions. Therefore, it is recommended that alternative treatment be discussed open-mindedly by all health care providers involved in the care of pediatric oncology patients.

[Intelligence and concentration capacity in children with leukemia and their adaptation to school]. / Intelligentie en concentratiievermogen van kinderen met leukemie en hun aan-passing op school.

In this study we test the hypothesis that children, suffering from acute lymphatic leukaemia (ALL) have more concentration problems, a lower intellectual capacity and more adjustment problems at school. The study deals only with those children whose ALL had been diagnosed at least three years before. Standardized tests have been given to fourteen children (aged 6-12), being treated or checked by the Children's Oncology Center of Amsterdam. Teachers were given a questionnaire and a written interview. Parents were interviewed orally. Scores on tests and questionnaire were compared with scores from norm groups. The study's most important results are: these children with ALL have a low concentration capacity, some adjustment problems at school (withdrawn behavior), but intellectually they don't function at a lower level.

Health-related quality of life problems of children aged 8-11 years with a chronic disease.

In paediatric research, Health-Related Quality-of-Life (HRQoL) has received increasing recognition as an important health outcome. This study aimed to investigate the nature and prevalence of HRQoL problems in children with different chronic diseases. Data were available on 318 children aged 8-11 years with different diseases: congenital heart disease (n = 50); coeliac disease (n = 105); asthma (n = 32); cancer (n = 23); juvenile chronic arthritis (n = 45); children with capillary haemangioma (n = 25) and severe meningococcal disease (n = 38). They all answered a validated generic instrument [TNO-AZL Children's Quality of life questionnaire] (TACQoL), in the outpatient clinic or at home. Analyses of variance were performed to investigate differences in mean scores for children with chronic conditions in comparison to healthy children. Prevalence of children at risk for substantial HRQoL problems was based on the 25th percentile in the norm population. In comparison to healthy children, only a small number of differences were found in mean scores of children studied. In contrast, prevalence of HRQoL problems in children with chronic diseases was higher in several domains. It is concluded that using an indicator variable of the norm 25th percentile seems important in identifying at-risk children with chronic disease.

Quality of life and current coping in young adult survivors of childhood cancer: positive expectations about the further course of the disease were correlated with better quality of life.

OBJECTIVES: As a result of advances in the treatment of childhood cancer many patients who may previously have had a limited life expectancy, are now surviving into adulthood. More insight is needed into the long-term adjustment of young adult survivors of childhood cancer. The purpose of this study was to (1) assess health-related quality of life (HRQoL), and (2) to explore the role of cognitive coping in relation to HRQoL. METHODS: HRQoL of 353 Dutch young adult survivors of childhood cancer was compared with HRQoL of 507 peers. Linear regression analyses predicted survivors' HRQoL by cognitive coping, independent of the impact of demographics and medical variables. RESULTS: Survivors reported a lower HRQoL than their peers. Health status was the best predictor of the Physical Component Scale of the RAND-36; health status and cognitive coping contributed almost equally well to the Mental Component Scale. The explanatory value of cognitive coping could mainly be attributed to the use of predictive control strategies. CONCLUSIONS: Because current coping seemed to be an important predictor of HRQoL, interventions directed at the coping strategies of survivors should be useful. The strong association between predictive coping and HRQoL stresses the importance of focusing at having positive expectations about the further course of the disease.

The course of life of survivors of childhood cancer.

The developmental consequences in adulthood of growing up with childhood cancer are not well understood. The Course of life questionnaire was developed to assess the attainment of developmental milestones retrospectively and socio-demographic outcomes in young adulthood. The aim of this study was to assess the course of life and socio-demographic outcomes in young adult survivors of childhood cancer. Knowledge about possible gaps in the course of life could enable health care providers to aim for the most favourable course of life. A total of 353 Dutch survivors and a comparison group of 508 peers without a history of cancer, all aged between 18 and 30, filled in the Course of life questionnaire. The course of life of the survivors was found to be hampered. The young adult survivors of childhood cancer in the Netherlands turned out to have achieved fewer milestones than their peers with respect to autonomy development, social development, and psycho-sexual development, or to have achieved the milestones when they were older than their peers. In addition, survivors displayed less risk behaviour than the comparison group. The survivors and the comparison group also differed on some socio-demographic issues. A considerably lower percentage of survivors than peers in the comparison group were married or living together, and/or employed. Their educational level, on the other hand, was as high as that of their peers.

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.

Adjustment and coping by parents of children with cancer: a review of the literature.

Studies published since about 1980 on psychological adjustment and coping of parents of children with cancer were reviewed. First, results concerning parental adjustment in terms of psychological distress, marital distress, and family functioning were summarized. Secondly, the use of coping strategies such as social support, communication, and search for meaning were described. Thirdly, factors that influence parental adjustment to childhood cancer, such as coping strategies and illness-related and demographic variables were discussed. All studies are summarized in a review table, with information about the number of participating parents and children, the purpose, measures and major results. Difficulties in generalizing findings are possibly due to the heterogeneous group of children with cancer, the differences in reporting emotional problems by mothers and fathers, the difficulties in assessing illness-specific problems, and the diversity in the ways of assessing coping and adjustment.