Objectives: To describe the Health Related Quality of life (HrQoL) of children/adolescents with GH Deficiency (GHD) and to examine the effects of sociodemographic (i.e., patients age, sex and family socioeconomic status) and clinical characteristics (i.e. degree of short stature and duration of treatment) on HrQoL from patients and their parents perspectives. Associations between QoLISSY questionnaire and demographics were evaluated using Mann-Whitney or Kruskal-Wallis whenever applicable and spearmans rho correlation coefficient.
Methods: The study included 322 children/adolescents with mean age 13.1±2.5 years and one of their parents as proxy. All patients had a clinical diagnosis of GHD and were treated with GH. The mean duration of treatment was 3.4±2.6 years. In order to evaluate childrens psychosocial functioning, children and parents, separately, completed the disease specific, Greek version, of the Quality of Life in Short Stature Youth (QoLISSY) questionnaire which refers to core dimensions of HrQoL (Physical, Social, Emotional), as well as Coping, height-related Beliefs, Treatment, concerns about the Future and Effects on parents.
Results: Regarding gender differences, results showed higher scores for coping efforts for girls (P=0.033) compared to boys. Parents of girls, referred that their children worry less about their future (P=0.042) than parents of boys. Younger children self reported better coping efforts (P=0.012) and better experiences regarding GH therapy (P=0.012) than adolescents, whereas their parents rated their children lower in levels of Coping (P=0.003). Higher socioeconomic status was positively correlated with childrens HrQoL (P=0.049). Regarding the degree of short stature, taller children/adolescents had better HrQoL, both self- and parent-reported, on the scales Physical QoL (pChildren=0.001, pParents=0.002), Social QoL (pChildren=0.001, pParents=0.009), Emotional QoL (pChildren=0.001), Effects on parents (pParents=0.027) and Total QoL (pChildren=0.001, pParents=0.007). Older age at treatment initiation was associated with more limitations on childrens perceived Total HrQoL (P=0.001) while longer duration of treatment was found to be associated with better self-report Total HrQoL (P=0.002) and with Beliefs (P=0.029) about stature. The parent report version analysis yielded comparable results. Children rated themselves as having higher HrQoL as compared to their parents.
Conclusions: Patient-related factors such as gender, age, socioeconomic status and degree of short stature affect the psychosocial functioning of children with GHD. Furthermore, age at initiation and duration of GH treatment play an important role. Parents report worse levels of HrQoL as compared to their children, possibly due to increased anxiety and/or expectations regarding their children.
27 - 29 Sep 2018
European Society for Paediatric Endocrinology