Health-related quality of life among children with Turner syndrome: controlled cross-sectional study
-
Pascal Amedro
,
Nabil Tahhan
Abstract
Background:
The aim of the study was to assess health-related quality of life (HR-QoL) in children with Turner syndrome in comparison with controls.
Methods:
We prospectively recruited 16 female girls with Turner syndrome (mean age 15.2±2.6 years) and 78 female controls (mean age 12.7±2.8 years) in randomly selected schools. We used the PedsQL, a generic HR-QoL questionnaire (self and parents’ versions).
Results:
Global HR-QoL scores in Turner syndrome were lower than controls for self-reports (respectively, 74.3±3.0 vs. 82.8±1.3, p=0.01) and parents’ reports (62.7±3.8 vs. 80.1±1.7, p<0.0001). In Turner syndrome, self-reported HR-QoL was impaired in school functioning (70.6±4.0 vs. 80.71±1.7, p=0.02), social functioning (78.2±4.0 vs. 90.4±1.8, p<0.01) and physical functioning (78.5±3.2 vs. 87.1±1.4, p=0.02), but not in emotional functioning. Parents’ reported HR-QoL was impaired in all four dimensions.
Conclusions:
HR-QoL was impaired in this cohort of young females with Turner syndrome, as in previously reported adult studies. In addition to medical treatment and routine clinical follow-up, female girls and teenagers with Turner syndrome should also be supported psychologically by social, educational and psychotherapeutic interventions that aim to address their self-esteem and emotional difficulties.
Acknowledgments
We thank Jean-Christophe Azorin, National Ministry of Education, for his collaboration to perform the study in schools. We also thank Cristel Gerl (study nurse), Annie Auer (pediatric specialist nurse), Amandine Marquina (pediatric specialist nurse), Anne Requirand (laboratory technician) and Valerie Macioce (medical writer).
Author contributions: All the authors have accepted responsibility for the entire content of this submitted manuscript and approved submission.
Research funding: Montpellier University Hospital Clinical Research Program funded this work (grant’s reference: UF8422).
Employment or leadership: None declared.
Honorarium: None declared.
Competing interests: The funding organization(s) played no role in the study design; in the collection, analysis, and interpretation of data; in the writing of the report; or in the decision to submit the report for publication.
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©2017 Walter de Gruyter GmbH, Berlin/Boston
Artikel in diesem Heft
- Frontmatter
- Editorial
- Endocrine aspects in cystic fibrosis
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- A retrospective analysis of longitudinal changes in bone mineral content in cystic fibrosis
- Cystic-fibrosis related-diabetes (CFRD) is preceded by and associated with growth failure and deteriorating lung function
- Partial clinical remission in type 1 diabetes: a comparison of the accuracy of total daily dose of insulin of <0.3 units/kg/day to the gold standard insulin-dose adjusted hemoglobin A1c of ≤9 for the detection of partial clinical remission
- Concentrations of leptin, adiponectin and other metabolic parameters in non-obese children with Down syndrome
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- Atopy as a risk factor for subclinical hypothyroidism development in children
- Mutation analysis of the NKX2.5 gene in Iranian pediatric patients with congenital hypothyroidism
- Health-related quality of life among children with Turner syndrome: controlled cross-sectional study
- Growth and pubertal patterns in young survivors of childhood acute lymphoblastic leukemia
- Clinical features and genotyping of patients with primary carnitine deficiency identified by newborn screening
- Letter to the Editor
- Sensitivity and specificity of cystic fibrosis-related diabetes screening methods: which test should be the reference method?
- Case Reports
- Type 1 rhizomelic chondrodysplasia punctata with a homozygous PEX7 mutation
- Severe hypertriglyceridemia at new onset type 1 diabetes mellitus
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Artikel in diesem Heft
- Frontmatter
- Editorial
- Endocrine aspects in cystic fibrosis
- Original Articles
- A retrospective analysis of longitudinal changes in bone mineral content in cystic fibrosis
- Cystic-fibrosis related-diabetes (CFRD) is preceded by and associated with growth failure and deteriorating lung function
- Partial clinical remission in type 1 diabetes: a comparison of the accuracy of total daily dose of insulin of <0.3 units/kg/day to the gold standard insulin-dose adjusted hemoglobin A1c of ≤9 for the detection of partial clinical remission
- Concentrations of leptin, adiponectin and other metabolic parameters in non-obese children with Down syndrome
- Parent reported nutritional risk and laboratory indices of cardiometabolic risk and in preschool-aged children
- Multinodular goiter in children: treatment controversies
- Atopy as a risk factor for subclinical hypothyroidism development in children
- Mutation analysis of the NKX2.5 gene in Iranian pediatric patients with congenital hypothyroidism
- Health-related quality of life among children with Turner syndrome: controlled cross-sectional study
- Growth and pubertal patterns in young survivors of childhood acute lymphoblastic leukemia
- Clinical features and genotyping of patients with primary carnitine deficiency identified by newborn screening
- Letter to the Editor
- Sensitivity and specificity of cystic fibrosis-related diabetes screening methods: which test should be the reference method?
- Case Reports
- Type 1 rhizomelic chondrodysplasia punctata with a homozygous PEX7 mutation
- Severe hypertriglyceridemia at new onset type 1 diabetes mellitus
- 45,X/46,XY ovotesticular disorder of sex development revisited: undifferentiated gonadal tissue may be mistaken as ovarian tissue
- MRI in medium-chain acyl-coenzyme a dehydrogenase deficiency: neuroimaging during the first month
