Martha A. Grootenhuis

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

Abstract 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.

Coping Strategies and Quality of Life of Adolescents with Inflammatory Bowel Disease

Objective: This study aims to compare generic coping styles adopted by adolescents suffering from inflammatory bowel disease (IBD) to styles used by their healthy peers, and to assess the association between coping styles and health-related quality of life (HRQoL). Methods: A generic coping style instrument, a disease-related coping style instrument and a disease-specific HRQoL instrument were administered to 65 adolescents (12–18 years old) with IBD. Normative data from the generic instrument were available. Mean domain scores of IBD patients were compared to normative scores. Multivariate linear regression analyses were performed on models with HRQoL domains as dependent, and preselected demographic and disease-related characteristics and coping styles as independent variables. Results: Adolescents with IBD use more avoidant coping styles than their healthy peers. HRQoL is associated with disease-related coping styles and with disease activity. More use of a predictive coping style (having positive expectations about the disease) and less use of a depressive reaction pattern are associated with better HRQoL in three out of six HRQoL domains. Conclusion: This study suggests an association between coping styles and HRQoL.

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. This will contribute to pediatric family care. OBJECTIVE. Our goal was to determine the health-related quality of life of parents of chronically ill children compared with parents of healthy schoolchildren. DESIGN, SETTING, AND PARTICIPANTS. A survey of 533 parents of children with chronic conditions (10 diagnosis groups, children aged 1–19 years, diagnosed >1 year ago, living at home) and 443 parents of schoolchildren was conducted between January 2006 and September 2007. Parents were approached through Emma Childrens Hospital (which has a tertiary referral and a regional function) and through parent associations. The comparison group included parents of healthy schoolchildren. Health-related quality of life was assessed with the TNO-AZL Questionnaire for Adults Health Related Quality of Life. MAIN OUTCOME MEASURE. Health-related quality of life measures gross and fine motor function, cognitive functioning, sleep, pain, social functioning, daily activities, sexuality, vitality, positive and depressive emotions, and aggressiveness. The health-related quality of life of the study group was compared with that of the comparison group, and effect sizes were estimated. The percentages of parents at risk for a low health-related quality of life were compared with the 25th percentile scores of the comparison group. RESULTS. Parents of chronically ill children had a significantly lower health-related quality of life. Subgroup analysis showed lower health-related quality of life on sleep, social functioning, daily activities, vitality, positive emotions, and depressive emotions in disease-specific groups. On average, 45% of the parents were at risk for health-related quality-of-life impairment. CONCLUSIONS. Parents of chronically ill children report a seriously lower health-related quality of life, which should receive attention and supportive care if necessary. A family-centered approach in pediatrics is recommended.

Quality of life in paediatric inflammatory bowel disease measured by a generic and a disease-specific questionnaire.

This study assessed the impact of inflammatory bowel disease (IBD) on the health‐related quality of life (HRQoL) of children and adolescents, using both a generic and a disease‐specific instrument. Three questionnaires were sent to all patients (8–18 y old) from the database of two large secondary/tertiary hospitals in the western part of The Netherlands. In total, 83 (66%) children responded, 18 were between 8 and 12 y old and the remaining 65 were older. HRQoL was measured using a generic instrument, the TNO‐AZL Childrens Quality of Life questionnaire (TACQOL), assessing seven domains, and the Impact‐II (NL), a disease‐specific instrument assessing six domains. Disease activity was measured by a five‐item symptom card. Compared with scores from a large reference population (n= 1810), younger children with IBD had a comparable HRQoL (measured by the TACQOL) on six domains, and better cognitive functioning, although they did not have severely active disease. Adolescent patients with IBD had a significantly impaired HRQoL on four domains (body complaints, motor functioning, autonomy and negative emotions). The Impact‐II discriminated well between patients with varying disease activity states on all domains.

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 3.0-T magnetic resonance imaging (MRI) scanner, diffusion tensor imaging (DTI) was performed, and WMFA values were calculated, including specific regions of interest (ROIs), and correlated with the speed of processing and motor speed. RESULTS Mean WMFA in the patient group, mean age 14 years (range 8.9 - 16.9), was decreased compared with the control group (p = 0.01), as well as WMFA in the right inferior fronto-occipital fasciliculus (IFO) (p = 0.03) and in the genu of the corpus callosum (gCC) (p = 0.01). Based on neurocognitive results, significant positive correlations were present between processing speed and WMFA in the splenium (sCC) (r = 0.53, p = 0.03) and the body of the corpus callosum (bCC) (r = 0.52, p = 0.03), whereas the right IFO WMFA was related to motor speed (r = 0.49, p < 0.05). CONCLUSIONS White matter tracts, using a 3.0-T MRI scanner, show impairment in childhood cancer survivors, medulloblastoma survivors, and also those treated with high doses of MTX. In particular, white matter tracts in the sCC, bCC and right IFO are positively correlated with speed of processing and motor speed.

Health-related quality of life and psychosocial functioning of adolescents with inflammatory bowel disease

Background: This study aimed to study how inflammatory bowel disease (IBD) affects health‐related quality of life (HRQoL) during adolescence and to examine how self‐esteem influences HRQoL. Methods: We compared self‐esteem, anxiety, and parental reports on behavioral problems in a group of IBD patients to a healthy norm group. Forty children and 38 parents filled out questionnaires separately. Trait anxiety, self‐perception, and the data on the Child Behavior Checklist were taken to compare the IBD population with healthy norms, using Students t tests and 1‐sample t tests. Effect sizes were calculated to show the clinical relevance of the differences. Multiple regression analyses were performed to assess the association between disease‐related variables and self‐perception with HRQoL, anxiety, and problem behavior. Results: The results of this study show that adolescents with IBD, especially boys, have a significantly worse HRQoL and show more internalizing problem behavior compared with healthy peers. An important predictor of HRQoL is self‐esteem. Conclusions: In conclusion, adolescents with IBD are at risk for experiencing problems with their illness. Because self‐esteem is an important predictor of HRQoL, it should be taken into account in future interventions for these children.

Health related quality of life of Dutch children: psychometric properties of the PedsQL in the Netherlands

BackgroundKnowledge about psychometric properties of the Pediatric Quality of Life Inventory (PedsQL) in the Netherlands is limited and Dutch reference data are lacking. 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.MethodsIn this study the PedsQL was administered to Dutch children aged 5 to 18 years. A socio-demographic questionnaire was completed as well. The sample consisted of three age groups: 5-7 years (parent proxy report), 8-12 years and 13-18 years (child self report). Analysis was performed with SPSS 16.0.2. A reliability analysis was done using Cronbachs alpha coefficient. Socio-demographic within-group differences were assessed by means of an ANOVA with post hoc Bonferroni correction and t-tests. Subsequently, construct validity was determined by t-tests and effect sizes.ResultsFor 496 children PedsQL reference data were collected. PedsQL total scores were 84.18 (group 5-7), 82.11 (group 8-12) and 82.24 (group 13-18). Internal consistency coefficients ranged from .53 to .85. Socio-demographic within-group differences demonstrated that, in group 8-12, children of parents born in the Netherlands had significantly lower scores on several PedsQL subscales, compared to children of parents born in another country. With respect to construct validity, healthy children of group 5-7 and 13-18 scored significantly higher than children with a chronic health condition on all subscales, except for emotional functioning. In group 5-7, the PedsQL total score for healthy children was 85.31, whereas the same age group with a chronic health condition scored 78.80. Effect sizes in this group varied from 0.58 to 0.88. With respect to group 13-18, healthy children obtained a PedsQL total score of 83.14 and children suffering from a chronic health condition 77.09. Effect sizes in this group varied from 0.45 to 0.67. No significant differences were found in group 8-12 regarding health.ConclusionThe Dutch version of the PedsQL has adequate psychometric properties and can be used as a health related quality of life instrument in paediatric research in the Netherlands.

Impaired cognition and schooling in adults with end stage renal disease since childhood

Aims: To determine cognitive and educational attainment in adults with end stage renal disease (ESRD) since childhood. Methods: All Dutch patients with onset of ESRD at age 0–14 years between 1972 and 1992, who were born before 1979, were asked to perform the Wechsler Adult Intelligence Scale (WAIS) test. Educational attainment was assessed by a questionnaire. Determinants of cognitive performance were measured by reviewing medical charts in 37 hospitals. Data on cognition were compared to those of age matched controls who cooperated in the revision of the Dutch WAIS. National Dutch Statistics data were used to compare educational attainment. Results: Data on intelligence and schooling were acquired in 126 of 187 patients (67%) and data on determinants of outcome in all patients. Clinical characteristics of participants and non-participants were comparable. Educational attainment of patients was low compared to the Dutch standard. Patient mean full scale IQ, performal IQ, and verbal IQ were 10.4, 9.2, and 9.7 points lower, respectively, compared to those of 36 controls. The lowest scores were observed in tasks which require concentration, memory, and general knowledge. Patients currently on dialysis and transplanted patients had similar IQ scores. Cumulative dialysis duration of more than four years was associated with a 3.4 times higher chance of having a full scale IQ of 1 SD below the mean. Conclusion: ESRD of childhood is associated with an impaired cognitive and educational attainment in adulthood. Long duration of dialysis may enhance intellectual impairment, which may not be reversible after renal transplantation.

Measuring quality of life in children with inflammatory bowel disease: The Impact-II (NL)

Inflammatory bowel disease (IBD) is a chronic debilitating disorder. Measures of quality of life are only available for adult patient populations. We developed a new disease-specific health-related quality of life instrument in Dutch for pediatric patients with IBD, called Impact-II (NL). We translated and strongly modified the original (Canadian) Impact questionnaire. It comprises 35 items in six domains. Eighty-three children (66%rpar; completed the questionnaire, 39 children were assessed twice. Disease symptoms were recorded and disease course severity assessed through chart review. Summated disease activity scores and disease course severity scores were dichotomized into two categories. Reliability coefficients were good for five out of six domains (Cronbachs α ranged from 0.57 to 0.86) and measures of test–retest stability in clinically stable patients were good for all domains (intra-class correlation coefficients ranged from 0.67 to 0.91). The instrument showed good discriminant validity between symptom groups and disease course severity on all domains. Convergent validity with a validated generic instrument [TNO-AZL Childrens Quality of life questionnaire (Tacqol)] showed satisfactory coefficients. In conclusion, the developed questionnaire shows good psychometric properties. Test–retest stability and responsiveness to change should be further assessed in larger patient samples. Cross-cultural translation and validation procedures into other languages are being conducted to enable international use of Impact-II.

Innovations in e-health

The theme of ISOQOL’s 19th Annual Conference in Budapest, Hungary, was The Journey of Quality of Life Research: A Path Towards Personalized Medicine. Innovations in e-health was one of four plenary panels. E-health is changing the landscape of clinical practice and health care, but the best way to leverage the many promised benefits of emerging e-health technologies is still not clear. The Innovations in e-health panel presented emerging changes in technologies and applications that will facilitate clinical decision making, improve quality and efficiency of care, engage individuals in clinical decision making, and empower them to adopt healthy behaviors. The purpose of this paper was to present emerging trends in e-health and considerations for successful adoption of new technologies, and an overview of each of the presentations in the e-health plenary. The presentations included a personal perspective on the use of technology for self-monitoring in Parkinson’s disease, an overview of online social networks and emerging technologies, and the collection of patient-reported outcomes through web-based systems in clinical practice. The common thread across all the talks was the application of e-health tools to empower individuals with chronic disease to be actively engaged in the management of their health. Considerations regarding data ownership and privacy, universal access to e-health, interactivity between different types of e-health technologies, and tailoring applications to individual needs were explored.