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 ¼ 50); coeliac disease (n ¼ 105); asthma (n ¼ 32); cancer (n ¼ 23); juvenile chronic arthritis (n ¼ 45); children with capillary haemangioma (n ¼ 25) and severe meningococcal disease (n ¼ 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.Keywords: Chronic disease, childhood, health-related quality-of-life, at-risk, consequencesEn la investigació n pediátrica, la Health-Related Quality-of-Life (HRQoL) ha recibido un creciente reconocimiento como una forma importante de evaluació n de resultados en aspectos de salud. Este estudio tenía como objeto investigar la naturaleza y prevalencia de los problemas HRQoL en niñ os con diferentes enfermedades cró nicas. Los datos estuvieron disponibles en 318 niñ os con edades entre los 8 y 11 añ os, con diferentes enfermedades: enfermedad cardiaca congénita (n ¼ 50), enfermedad celíaca (n ¼ 105), asma (n ¼ 32), cancer (n ¼ 23), artritis juvenil cró nica (n ¼ 45), niñ os con hemangioma capilar (n ¼ 25) y enfermedad meningocó ccica severa (n ¼ 38). Todos contestaron un instrumento genérico validado [TNO-AZL Children's Quality of Life Questionnaire] (TACQoL) en la clínica de consulta externa o en casa. Se realizó un análisis de variació n para investigar las diferencias en las calificaciones promedio en los niñ os con afecciones cró nicas en cornparació n a los niñ os sanos. La prevalencia de niñ os en riesgo para tener problemas substánciales HRQoL se basó en la percentila 25 de la norma poblacional. En comparació n a los niñ os sanos se encontró solamente un nú mero pequeñ o de diferencias en las calificaciones de los niñ os estudiados. En contraste la prevalencia de los problemas del HRQoL en los niñ os con enfermedades cró nicas fue más alta en varias áreas. Concluimos que el uso de un indicador variable de la norma de la percentila 25 parece ser importante en la identificació n de niñ os en riesgo que cursan con una enfermedad cró nica.Palabras clave: Enfermedad crónica, infancia, calidad d...
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.
Loonen HJ, Grootenhuis MA, Last BF, Koopman HM, Derkx HHF. Quality of life in paediatric in ammatory bowel disease measured by a generic and a disease-speci c questionnaire. Acta P~diatr 2002; 91: 348-354. Stockholm. ISSN 0803-5253 This study assessed the impact of in ammatory bowel disease (IBD) on the health-related quality of life (HRQoL) of children and adolescents, using both a generic and a disease-speci c 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-speci c instrument assessing six domains. Disease activity was measured by a ve-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 signi cantly 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. Key words: Children, health-related quality of life, in ammatory bowel disease, quality-of-life instrumentsHHF Derkx,
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.
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