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Health-related quality of life for children with rare diagnoses, their parents' satisfaction with life and the association between the two.

ABSTRACT: PURPOSE: To examine children's health-related quality of life and parents' satisfaction with life and explore the association between the two in families where a child has a rare disorder. METHODS: We used a cross-sectional study design. A questionnaire was sent to parents of 439 school children (6-18 years) with congenital rare disorders. Children's health-related quality of life (HRQOL) was examined by Pediatric Quality of Life InventoryTM 4.0 (PedsQL) Norwegian version. Satisfaction with life was examined by Satisfaction with Life Scale (SWLS). RESULTS: The response rate was 48% (n = 209). The average age of the children was 12 years and 50% were girls. The parents scored their children with reduced physical, emotional, social and school functioning. The reductions were greatest in the physical area. Parents scored average to high on SWLS but significantly lower than the general Norwegian population. There was a positive association between parental SWLS and the children's social functioning and school functioning. CONCLUSION: Children with congenital, rare disorders often require assistance from many parts of the public service system. Caring for their physical needs should not conflict with their educational and social needs. It is important that the children's school-life is organized so that the diagnosis does not interfere with the children's education and social life more than necessary.

SUBMITTER: Johansen H

PROVIDER: S-EPMC3844436 | biostudies-literature | 2013

REPOSITORIES: biostudies-literature

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Health-related quality of life for children with rare diagnoses, their parents' satisfaction with life and the association between the two.

Johansen Heidi H Dammann Brede B Andresen Inger-Lise IL Fagerland Morten Wang MW

Health and quality of life outcomes 20130908

<h4>Purpose</h4>To examine children's health-related quality of life and parents' satisfaction with life and explore the association between the two in families where a child has a rare disorder.<h4>Methods</h4>We used a cross-sectional study design. A questionnaire was sent to parents of 439 school children (6-18 years) with congenital rare disorders. Children's health-related quality of life (HRQOL) was examined by Pediatric Quality of Life InventoryTM 4.0 (PedsQL) Norwegian version. Satisfact ...[more]

PMID: 24010895

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Project description:PURPOSE:This study aimed to examine health-related quality of life (HRQoL) of children and their parents, 6 months after the child's admission to the Pediatric Intensive Care Unit (PICU). Associations between parents' reports regarding HRQoL of their child and of themselves were investigated, as well as associations between children's baseline variables and their parent-reported HRQoL outcomes. METHODS:This is a secondary analysis of cross-sectional data collected in a group of children who participated in the PEPaNIC trial. Six months after discharge from the PICU, parents of critically ill children completed the Infant-Toddler Quality of Life Questionnaire (ITQOL, for age 0-3 years) or the Child Health Questionnaire-Parent Form 50 (CHQ-PF50, for age 4-18 years), which are parallel questionnaires. Parents completed the Short Form Health Survey (SF-12) regarding their own HRQoL. Results were compared with normative data. RESULTS:At 6 months' follow-up, 86 children of the 1343 (6%) had died which resulted in 1257 eligible children. Parents of 576 surviving children (46%) completed the questionnaires. Children of responding parents had less often an acute reason for admission and differed in diagnosis compared with children of non-responders. PICU children scored lower on most ITQOL (n?=?390) scales and CHQ-PF50 (n?=?186) scales compared with normative data. Parents reported (n?=?570) higher scores on the physical (p?<?0.001) and lower scores on the mental SF-12 scale (p?<?0.001) compared with normative data. Parents? mental HRQoL correlated with HRQoL they reported for their child (Pearson Correlations range 0.25-0.57, p?<?0.001-0.002). Shorter length of stay, lower risk of mortality, younger age, and cardiac diagnosis were associated with higher parent-reported HRQoL outcomes for the child. CONCLUSIONS:Six months after PICU discharge, critically ill children have lower HRQoL compared with normative data. The mental component of HRQoL is impaired in parents and is associated with lower overall parent-reported HRQoL of their child.

Project description:OBJECTIVES:To describe the distribution of health-related quality of life (HRQL) in a national sample of Australian children aged 11-12 years and their parents, and examine associations within parent-child dyads. DESIGN:The Child Health CheckPoint, a population-based cross-sectional study nested between waves 6 and 7 of the Longitudinal Study of Australian Children (LSAC). SETTING:Assessment centres in seven Australian cities and eight regional towns, or home visit; February 2015 to March 2016. PARTICIPANTS:Of all participating CheckPoint families (n=1874), 1853 children (49.0% girls) and 1863 parents (87.7% mothers) with HRQL data were included (1786 pairs). OUTCOME MEASURES:HRQL was self-reported using preference-based (Child Health Utility 9Dimension, CHU9D) and non-preference-based (Pediatric Quality of Life, PedsQL V.4.0) measures for children and preference-based measures for parents (CHU9D; Assessment of Quality of Life 8 Dimension, AQoL-8D). Utility scores from preference-based measures were calculated using existing Australian algorithms to present a score on a 0-1 scale, where 1 represents full health. Parent-child concordance was assessed using Pearson's correlation coefficients and adjusted linear regression models. Survey weights and methods were applied to account for LSAC's complex sample design, stratification and clustering within postcodes. RESULTS:Children's means and SD were 0.81 (SD 0.16) for CHU9D and 78.3 (SD 13.03) for PedsQL. In adults, mean HRQL for AQoL-8D and CHU9D were 0.78 (SD 0.16) and 0.89 (SD 0.10), respectively. Mean HRQL was similar for boys and girls, but slightly higher for fathers than mothers. The Pearson correlation coefficient for parent-child CHU9D values was 0.13 (95% CI 0.09 to 0.18). Percentiles and concordance are presented for both samples for males and females separately and together. CONCLUSIONS:We provide Australian paediatric population values for HRQL measures, and the first national CHU9D values for mid-life adults. At age 11-12 years in this relatively healthy sample, parent-child concordance in HRQL was small.

Project description:BackgroundTransplantation is a saving therapeutic that has heavy consequences. The quality of life (QoL) of transplanted children and their parents has been little studied and should help physicians better manage these patients. The objectives of the study were to assess: (1) the QoL of transplanted children and parents and compare it with that of children with other chronic conditions associated with long-term consequences, and (2) potential variables modulating the QoL.MethodsThis cross-sectional study was performed in a multidisciplinary paediatric unit (Timone Hospital, Marseille, France). Children were less than 18 years old; had a liver, kidney or heart transplant; and had a time since transplantation of 1-10 years. Socio-demographics and clinical data were recorded from medical forms. The QoL was assessed using the VSP-A (Vécu et Santé Perçue de l'Adolescent et de l'Enfant) and the WhoQoL self-reported questionnaires.ResultsForty-five families were included (response rate: 76%). The transplanted organs were the liver for 20 children, the kidney for 15 children, and the heart for 10 children. The QoL of transplanted children reported by their parents was better than that of children with inborn errors of metabolism and similar to that of childhood leukaemia survivors. The QoL of parents of transplanted children was better than that of parents of children with inborn errors of metabolism and did not differ from French norms. The QoL did not differ according to the nature of the transplanted organ, sex or the main sociodemographic data. The main modulators decreasing QoL were residual treatment level, medications switch and the presence of another regular treatment.ConclusionTransplanted children and their families reported a fairly preserved QoL compared to children with other chronic health conditions. Special attention should be given to QoL modulators related to therapeutic management (medication switches, regular treatments) that might be amenable to improve the QoL. Trial registration Ethics committee of Aix-Marseille University, France (reference number: 2014-08-04-03, 24/4/2015; https://www.univ-amu.fr/fr/public/comite-dethique ).

Dataset Information

Health-related quality of life for children with rare diagnoses, their parents' satisfaction with life and the association between the two.

Publications

Health-related quality of life for children with rare diagnoses, their parents' satisfaction with life and the association between the two.

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