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.
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.
Entities:
Keywords:
PedsQL; Turner syndrome; health-related quality of life; pediatrics
Authors: Hamouda Abassi; Helena Huguet; Marie-Christine Picot; Marie Vincenti; Sophie Guillaumont; Annie Auer; Oscar Werner; Gregoire De La Villeon; Kathleen Lavastre; Arthur Gavotto; Pascal Auquier; Pascal Amedro Journal: Health Qual Life Outcomes Date: 2020-11-12 Impact factor: 3.186
Authors: Oscar Werner; Charlene Bredy; Kathleen Lavastre; Sophie Guillaumont; Gregoire De La Villeon; Marie Vincenti; Cristelle Gerl; Yves Dulac; Nathalie Souletie; Philippe Acar; Laurence Pages; Marie-Christine Picot; Gerard Bourrel; Agnes Oude Engberink; Elodie Million; Hamouda Abassi; Pascal Amedro Journal: Health Qual Life Outcomes Date: 2021-01-19 Impact factor: 3.186
Authors: Pascal Amedro; Oscar Werner; Hamouda Abassi; Aymeric Boisson; Luc Souilla; Sophie Guillaumont; Johanna Calderon; Anne Requirand; Marie Vincenti; Victor Pommier; Stefan Matecki; Gregoire De La Villeon; Kathleen Lavastre; Alain Lacampagne; Marie-Christine Picot; Constance Beyler; Christophe Delclaux; Yves Dulac; Aitor Guitarte; Philippe Charron; Isabelle Denjoy-Urbain; Vincent Probst; Alban-Elouen Baruteau; Philippe Chevalier; Sylvie Di Filippo; Jean-Benoit Thambo; Damien Bonnet; Jean-Luc Pasquie Journal: Health Qual Life Outcomes Date: 2021-07-28 Impact factor: 3.186