Martha A Grootenhuis

..It is concluded that using an indicator variable of the norm 25th percentile seems important in identifying at-risk children with chronic disease...

..However, no large scale studies on cognitive levels in MPS III patients, using formal psychometric tests, have been reported...

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..Muscular dystrophies are chronic diseases manifesting with progressive muscle weakness leading to decreasing activities and participation. To understand the impact on daily life, it is important to determine patients' quality of life...

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..The strength of the study is the inclusion of a substantial group of children with cancer who have a reduced survival perspective...

..Paediatric nephrologists should pay more attention to the development of social and independent functioning of children with ESRD in order to prepare them for active participation in society in adult life...

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

..The aim of the study was to access Health Related Quality of Life (HRQoL) in preschool cancer survivors during the first 3 years of continuous remission after the end of successful treatment, and to identify predictors of HRQoL...

..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...

..The aim of this study was to investigate the HRQoL of children with SCD, controlling for SES by comparing them to healthy siblings (matched for age and gender), and to a Dutch norm population...

..Awareness of HRQoL consequences and physical sequelae could lead to changes in support during the acute phase and thereafter. The aim of this study was to evaluate HRQoL in PICU survivors...

..The purpose of the study was to investigate health-related quality of life (HRQOL) of pediatric patients, and emotional reactions of their parents, shortly after the end of successful treatment...

..The present study examined whether the advancement of treatment modality has resulted in improved cognitive and motor outcomes...

..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...

..The aim of this study is to investigate parental emotional functioning during the first five years of continuous remission after the end of their child's treatment and to identify predictors of parental emotional functioning...

..Health-care providers should help to minimize the harm for children who grow up with cancer by encouraging social and psychosexual development. Children should be encouraged to make friends and to participate in peer activities...

..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. This will contribute to pediatric family care...

..By this systematic and thorough procedure, national consensus on a comprehensive definition of chronic conditions in children which can be used for epidemiological research was reached...

..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...

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..Optimal transition from pediatric to adult health care requires knowledge of the psychosocial history of patients grown up with a pediatric disease...

..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...

..The aim of this study was to investigate the association of laboratory markers of disease severity and radiological parameters with neurocognitive functioning in children with SCD...

..This study assessed the health-related quality of life (HRQOL) and the psychosocial developmental trajectory of young female beneficiaries with JIA compared with peers from the Dutch general population...

..Several other psychosocial variables were indicative of better HRQoL but further research is needed to confirm and to understand the relationship between psychosocial variables and HRQoL...

..To describe employment achievement and social independence of adults with childhood end-stage renal disease (ESRD) and to explore determining factors...

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..The aim of the current study was to evaluate a broad range of neurocognitive functions in children with SCD compared to a SES-matched control group, in order to gain more insight into the specific deficits of these patients...

..To study posttraumatic stress disorder (PTSD) in parents after unexpected pediatric intensive care unit (PICU) treatment of their child and to identify risk factors for its development...

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..The insight that emotional support and loss of friendship influence the HRQoL of the parents enables treating physicians to provide better support for these parents...

..The authors evaluated health-related quality of life (HRQOL) and behavioral functioning in patients with a history of Kawasaki disease (KD)...

..In about one third of children with constipation, symptoms continue into adulthood. Knowledge on HRQoL in adults with constipation persisting from childhood is lacking...

..A secondary objective is to investigate why and for whom this intervention works, in order to understand the underlying mechanisms of the intervention effect...

..To determine the effectiveness of a psycho-educational group intervention for chronically ill children...

..Our aim was to evaluate the clinical effectiveness of behavioral therapy with laxatives compared with conventional treatment in treating functional constipation in childhood...

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..Quality of life was decreased in Fabry males in the domains of physical functioning and bodily pain and of general health perception in females...

..Aim of the current study is to collect Dutch reference data of the PedsQL and subsequently assess reliability, socio-demographic within-group differences and construct validity...

..More insight in the course of life, disease-specific consequences and quality of life of atopic dermatitis is of high importance, especially in case of severe atopic dermatitis...

..To study the prevalence of posttraumatic stress in parents after an acute admission to a paediatric intensive care unit (PICU) and to determine risk factors for the development of posttraumatic stress...

..In a long-term follow-up study, we assessed quality of life in these patients and compared their outcomes with those in the general population and in dialysis patients with adult-onset of ESRD...

..Future interventions should focus on follow-up care for this population to help them re-adjust after this stressful event...

..Children at risk may be identified according to sibling age and gender and according to long-term family adaptation processes and sibling coping abilities...

..These results indicate that important aspects of life are affected in a substantial number of persons who have been diagnosed with cancer during childhood or adolescence...

..The Impact-II is recommended for clinical use because of its high discriminative validity...

..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...

..Further investigation should focus on possibilities to improve sleep quality and diminish fatigue...

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..The aim of the current article is to describe the development and introduction of a new web-based application for the use of PROs in daily paediatric clinical practice...

..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...

..Further well-designed prospective studies evaluating sequelae of the original illness and its treatment are warranted...

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..To assess the quality of life, anxiety and concerns among statin-treated children with familial hypercholesterolaemia (FH) and their parents...

..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...

..In addition, the impact of demographic, medical and treatment factors on survivors' posttraumatic stress symptoms was studied...

..CONCLUSION: This study suggests an association between coping styles and HRQoL...

..This study determined HRQOL of children with cancer shortly after the end of successful treatment compared with normative values...

..Further research is needed to clarify the undoubtedly complex somatic and psychological mechanisms responsible for the development, maintenance and treatment of fatigue in childhood cancer survivors...

..Additional data are needed to help us understand the needs of survivors and to identify those subgroups of survivors who are at greatest risk for the adverse sequelae of the disease and its treatment...

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..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...

..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...

..A psychosocial support model is proposed which can be helpful in interpreting these emotions and coping strategies...

..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...

..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...

..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...

..The results of this study demonstrate that although PKU is a chronic disease with the burden of strict dietary control, early and continuously treated patients with PKU can have a normal health-related quality of life and course of life...

..Hence, it is still unclear whether the frequently reported cognitive and motor deficits observed during childhood persist in adulthood...

..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...

..The onset of vitiligo occurs before the age of 20 years in 50% of patients. Having a chronic disease in childhood can impede a child's health-related quality of life (HRQL)...

..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...

..Stressful medical events were moderately associated with PTSD. Prevalence of PTSD was elevated among single women and middle-aged men...

..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...

..The investigated factors could explain poor quality of life and worries only to a limited extent. Further research exploring determinants and indices of quality of life and worries in LTS is warranted...

..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...

..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...

..Constipation and encopresis frequently cause problems with respect to emotional wellbeing, and social and family life. Instruments to measure Health Related Quality of Life (HRQoL) in these disorders are not available...

..Children with juvenile idiopathic arthritis (JIA) are at risk for HRQoL problems. The aim of this study was to investigate the effectiveness of ePROs in clinical pediatric rheumatology care...

..Also examined is whether positive effects on physical fitness reduce inactivity-related adverse health problems, improve quality of life, and are cost-effective...

..The present study was performed to assess the effect of dexamethasone on QoL during treatment for ALL according to this protocol...

..Early and regular evaluation and support of possible cognitive problems should be a major part of the protocol for the follow-up of patients with classical galactosemia...

..Furthermore, we investigated if visibility and a complicated course of the haemangioma had influence on these outcomes...

..To release a newly protocolized behavioral intervention program for children with chronic constipation aged 4-18 years with guidance from literature about underlying theories from which the treatment techniques follow...

..This paper describes the protocol of the PRISMA study, a randomized controlled trial to investigate the efficacy of neurofeedback to improve neurocognitive functioning in children treated for a brain tumor...

..To compare the methods and designs, constructs, publication rate, and location of studies in the past 15 years of pediatric psycho-oncology research, across geographic areas and over time...

..To obtain valid and reliable estimates of the prevalence of chronic health conditions, a clear definition is needed...

..No medical determinant was associated with alexithymia. CONCLUSIONS: Stress due to childhood cancer does not affect the alexithymia scores of females. However, male cancer survivors score less alexithymic than age matched controls...

..Cross-cultural translation and validation procedures into other languages are being conducted to enable international use of Impact-II...

..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...

..This review summarizes recent studies on the feasibility, reliability and validity of pediatric health-related quality of life questionnaires and gives an overview of recent applications of these measures in pediatrics...