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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

This paper investigated educational achievement, employment status, living situation, marital status and offspring in 500 Dutch long-term young adults survivors of childhood cancer (age range, 16-49 years, 47% female). The results were compared with a reference group of 1092 persons with no history of cancer (age range, 15-33 years, 55% female). The impact of demographic and medical characteristics on psychosocial adjustment was studied. All participants completed a self-report questionnaire. The results showed that, although many survivors are functioning well and leading normal lives, a subgroup of survivors were less likely to complete high-school, to attain an advanced graduate degree, to follow normal elementary or secondary school and had to be enrolled more often on learning disabled programs. The percentage of employed survivors was lower than the percentage of employed controls in the comparison group, but more survivors were student or homemaker. Survivors had lower rates of marriage and parenthood, and worried more about their fertility and the risk of their children having cancer. Survivors, especially males, lived more often with their parents. Cranial irradiation dose less than or equal to 25 Gy was an important independent prognostic factor of lower educational achievement. Survivors with a history of brain/CNS tumours had a higher risk of being single than survivors with a diagnosis of leukaemia/non-Hodgkin lymphoma. 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. Copyright (C) 2002 John Wiley Sons, Ltd

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 Children's 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 (it = 18 10). 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. Conclusion: Adolescents with IBD have a severely affected HRQoL. Impairment on motor functioning and autonomy is a threat to gaining independence from caregivers, and a high occurrence of negative emotions places patients at risk for depressive and behavioural disorders. The Impact-II is recommended for clinical use because of its high discriminative validity