A multicentric study of disease-related stress, and perceived vulnerability, in parents of children with congenital cardiac disease.

Parents of children with congenitally malformed hearts can suffer from stress as a result of the medical condition of their child. In this cross-sectional study, we aimed to describe levels of parental stress, and perceived vulnerability, in parents of children who underwent major cardiac surgery, by using both generic and disease-related measures for assessment. We included parents of children who underwent open-heart surgery over the period 2002 through 2007 in the Center for congenital Anomalies Heart Amsterdam/Leiden, abbreviated to provide the acronym CAHAL.

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.

Behavioral and emotional problems in children with sickle cell disease and healthy siblings: Multiple informants, multiple measures.

Background: Behavioral and emotional problems in children with sickle cell disease (SCD) may be related to disease factors, or to socio-demographic factors. The aim of this study was to investigate the prevalence of behavioral and emotional problems in children with SCD living in a Western European country, compared to healthy siblings (who were comparable in age, gender, ethnicity, and socio-economic status-SES), and to a Dutch norm population.

Methods: The Child Behavior Checklist (CBCL), Teacher Report Form (TRF) and Disruptive Behavior Disorders rating scale (DBD) were distributed among caregivers and teachers of 119 children with SCD aged 6-18 years and among caregivers and teachers of 38 healthy siblings.

A predictive model of Health Related Quality of life of parents of chronically ill children: the importance of care-dependency of their child and their support system.

Background: Parents of chronically ill children are at risk for a lower Health Related Quality of Life (HRQoL). Insight in the dynamics of factors influencing parental HRQoL is necessary for development of interventions. Aim of the present study was to explore the influence of demographic and disease related factors on parental HRQoL, mediated by employment, income, leisure time, holiday and emotional support in a comprehensive model.

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.

An explorative study on quality of life and psychological and cognitive function in pediatric survivors of septic shock.

Objective: To evaluate self-reported health-related quality of life, anxiety, depression, and cognitive function in pediatric septic shock survivors.

Design: A retrospective cohort study.

Setting: A 14-bed tertiary pediatric intensive care unit.

Parental stress before, during, and after pediatric stem cell transplantation: a review article.

Goals Of Work: Pediatric stem cell transplantation (SCT) is a stressful treatment for children with relapsed or high-risk malignancies, immune deficiencies and certain blood diseases. Parents of children undergoing SCT can experience ongoing stress related to the SCT period. The aim of this article was to present a literature review of articles on parental distress and adaptation before, during, and after SCT and to identify risk and protective factors.

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.

Reducing acute stress in a 16-year old using trauma-focused cognitive behaviour therapy and eye movement desensitization and reprocessing.

Objective: To assess the effects of trauma-focused cognitive behaviour therapy (TF-CBT) and Eye Movement Desensitization and Reprocessing (EMDR) for the treatment of acute stress in an adolescent.

Methods: A combination of TF-CBT and EMDR was provided to a 16-year-old girl with distressing memories, anxiety and flashbacks. For measurement of the efficacy of the treatment package, the Children's Revised Impact of Event Scale (CRIES-13) was used.

Predicting health-related quality of life of parents of children with inherited metabolic diseases.

Aim: The aim of this study was to examine medical, socio-demographic and psychosocial determinants of health-related quality of life (HRQoL) of parents of children with metabolic diseases.

Methods: A survey among parents of children with metabolic diseases (children aged 1-19 years, diagnosed >1 year before the start of the study, living at home). Parents were approached through the Emma Children's Hospital, and through a national parent and patient association.

Evaluation of a psychoeducational intervention for adolescents with inflammatory bowel disease.

Objectives: Inflammatory bowel disease (IBD), comprising Crohn's disease, ulcerative colitis, and indeterminate colitis, often has its onset in adolescence. The aim of this study was to evaluate whether a psychoeducational group intervention (aiming to enhance information seeking and giving about the disease, relaxation, social competence, and positive thinking) can strengthen the coping efforts of adolescents with IBD and have a positive effect on their Health-Related Quality of Life (HRQoL).

Methods: Adolescent IBD patients from the Emma Children's Hospital AMC and adolescent members of the Crohn and Ulcerative Colitis Association in The Netherlands, were invited to participate in The intervention study.

Psychometric qualities of the Dutch version of the Pediatric Inventory for Parents (PIP): a multi-center study.

Objectives: Diagnosis and treatment of childhood cancer are continuous stressors in the lives of the entire family involved. Disease-related tools for the assessment of parental stress and adaptation are scarce. For that reason, the Pediatric Inventory for Parents (PIP), a disease-related measure, was translated into Dutch and its psychometric qualities were determined to prove its value.

Evaluation of a psychoeducational intervention for adolescents with inflammatory bowel disease.

Objectives: Inflammatory bowel disease (IBD), comprising Crohn's disease, ulcerative colitis, and indeterminate colitis, often has its onset in adolescence. The aim of this study was to evaluate whether a psychoeducational group intervention (aiming to enhance information seeking and giving about the disease, relaxation, social competence, and positive thinking) can strengthen the coping efforts of adolescents with IBD and have a positive effect on their Health-Related Quality of Life (HRQoL).

Methods: Adolescent IBD patients from the Emma Children's Hospital AMC and adolescent members of the Crohn and Ulcerative Colitis Association in The Netherlands, were invited to participate in The intervention study.

Health-related quality of life in young adults with symptoms of constipation continuing from childhood into adulthood.

Background: Children with functional constipation report impaired Health-related Quality of Life (HRQoL) in relation to physical complaints and long duration of symptoms. In about one third of children with constipation, symptoms continue into adulthood. Knowledge on HRQoL in adults with constipation persisting from childhood is lacking.

The course of life of patients with childhood atopic dermatitis.

Atopic dermatitis mainly covers the period of infancy to adulthood, an important period in the development of an individual. The impairment of quality of life and the psychological wellbeing of children with atopic dermatitis have been well documented but so far no data exist about the impact of atopic dermatitis in childhood on fulfilling age-specific developmental tasks and achieving developmental milestones during this period, referred to as the course of life. The aims of this study were to: (i) assess the course of life and define the disease-related consequences in young adult patients with childhood atopic dermatitis and (ii) determine whether the severity of atopic dermatitis is predictive for the course of life, the disease-related consequences and quality of life later in life.

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.

Coping strategies of retinoblastoma survivors in relation to behavioural problems.

Objective: To assess coping strategies of long-term retinoblastoma (RB) survivors and explore determinants of behavioural functioning, including medical, socio-demographic and coping variables.

Methods: This population-based cross-sectional study included 117 RB survivors (12-35 years), registered in the Dutch national RB register. Survivors were asked to fill in coping, social support and behavioural questionnaires, and situational characteristics were obtained from medical archives and from an interview.

Health related quality of life in children with constipation-associated fecal incontinence.

Objectives: With a disease-specific questionnaire, this study aimed to evaluate health-related quality of life (HRQoL) in children with constipation in association with clinical characteristics.

Study Design: Children with constipation-associated fecal incontinence (n = 114), 8 to 18 years, filled out the Defecation Disorder List at a Dutch tertiary hospital. Correlations and linear regression analysis between clinical characteristics and scores on emotional and social functioning were calculated.

White matter fractional anisotropy correlates with speed of processing and motor speed in young childhood cancer survivors.

Purpose: To determine whether childhood medulloblastoma and acute lymphoblastic leukemia (ALL) survivors have decreased white matter fractional anisotropy (WMFA) and whether WMFA is related to the speed of processing and motor speed.

Methods And Materials: For this study, 17 patients (6 medulloblastoma, 5 ALL treated with high-dose methotrexate (MTX) (4 x 5 g/m(2)) and 6 with low-dose MTX (3 x 2 g/m(2))) and 17 age-matched controls participated. On a 3.

Evaluation of a psycho-educational group intervention for children treated for cancer: a descriptive pilot study.

Objective: The present paper reports about the content and evaluation of a psycho-educational group intervention for children growing up with a history of cancer, Op Koers Oncologie (OK Onco). OK Onco is aimed at empowerment of survivors of childhood cancer by teaching disease-related skills. The purpose of this pilot study is to evaluate whether OK Onco was appropriate for use among paediatric survivors of childhood cancer.

Child and parental adaptation to pediatric stem cell transplantation.

Goals Of Work: Allogeneic pediatric stem cell transplantation (SCT) is a very intensive treatment with a high mortality and morbidity. The objectives of this study were to assess the (1) self- and proxy-reported health-related quality of life (HRQoL) compared to a norm group, (2) levels of parenting stress compared to a norm group, (3) differences in HRQoL and parenting stress pre- and post-SCT, and (4) effect of child age and parenting stress on self- and proxy-reported HRQoL pre- and post-SCT.

Materials And Methods: Pre- and on average 10 months post-SCT, 21 children and adolescents and their parent(s) completed questionnaires on HRQoL and the mothers completed a measure of parenting stress.

Effect of dexamethasone on quality of life in children with acute lymphoblastic leukaemia: a prospective observational study.

Background: Glucocorticoids are important in the treatment of childhood acute lymphoblastic leukaemia (ALL). However, cyclic administration of high dose glucocorticoids may cause rapid and substantial changes in quality of life (QoL). The maintenance phase of the Dutch ALL-9 protocol consisted of alternating two weeks on and five weeks off dexamethasone (6 mg/m(2)/day).

Hidden consequences of success in pediatrics: parental health-related quality of life--results from the Care Project.

Context: The number of parents who care for a chronically ill child is increasing. Because of advances in medical care, parental caring tasks are changing. A detailed description of parental health-related quality of life will add to the understanding of the impact of caring for a chronically ill child.

Health-related quality of life, cognitive functioning and behaviour problems in children with Langerhans cell histiocytosis.

Background: This study was designed to evaluate generic and disease-specific health-related quality of life (HRQoL), cognitive functioning and behaviour problems of children with Langerhans Cell Histiocytosis (LCH). Furthermore, we investigated which medical determinants and social demographic factors were predictive for HRQoL, cognitive functioning and behavioural problems.

Procedure: In this cross-sectional case-control study 24 children ranging from 7 to 17 years of age were administered a HRQoL questionnaire, cognitive tests and behaviour ratings.