Health-related quality of life among children with Turner syndrome: controlled cross-sectional study

Pascal Amedro; Nabil Tahhan; Helena Bertet; Claire Jeandel; Sophie Guillaumont; Thibault Mura; Marie-Christine Picot

doi:10.1515/jpem-2017-0026

Article

Health-related quality of life among children with Turner syndrome: controlled cross-sectional study

Pascal Amedro , Nabil Tahhan , Helena Bertet , Claire Jeandel , Sophie Guillaumont , Thibault Mura and Marie-Christine Picot

Published/Copyright: July 28, 2017

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From the journal Journal of Pediatric Endocrinology and Metabolism Volume 30 Issue 8

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.

Keywords: health-related quality of life; pediatrics; PedsQL; Turner syndrome

Corresponding author: Pascal Amedro, MD, PhD, Pediatric and Congenital Cardiology Department, Montpellier University Hospital, 371 Avenue du Doyen Giraud, 34295 Montpellier, France, Phone: +33 4 67 33 66 39, Fax: +33 4 37 33 21 29

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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Received: 2017-1-18

Accepted: 2017-6-3

Published Online: 2017-7-28

Published in Print: 2017-8-28

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Articles in the same Issue

https://doi.org/10.1515/jpem-2017-0026

Keywords for this article

health-related quality of life; pediatrics; PedsQL; Turner syndrome