Dissertation committee:
Τσουμάκας Κωνσταντίνος, Καθηγητής, Τμήμα Νοσηλευτικής, ΕΚΠΑ
Παυλοπούλου Ιωάννα, Αναπληρώτρια Καθηγήτρια, Τμήμα Νοσηλευτικής, ΕΚΠΑ
Κούκια Ευμορφία, Αναπληρώτρια Καθηγήτρια, Τμήμα Νοσηλευτικής, ΕΚΠΑ
Φιλντίσης Γεώργιος, Καθηγητής, Τμήμα Νοσηλευτικής, ΕΚΠΑ
Καλοκαιρινού Αθηνά, Καθηγήτρια, Τμήμα Νοσηλευτικής, ΕΚΠΑ
Μάντζιου Βασιλική, Καθηγήτρια, Τμήμα Νοσηλευτικής, ΕΚΠΑ
Φώτος Νικόλαος, Επίκουρος Καθηγητής, Τμήμα Νοσηλευτικής, ΕΚΠΑ
Summary:
Objectives: The aims of this study were: (1) to investigate the psychometric properties of the Greek version of the QoLISSY questionnaire; (2) to describe the Health Related Quality of Life (HrQoL) of children and adolescents with Growth Hormone 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; (3) to evaluate the perception of children with Growth Hormone Deficiency (GHD) and their parents, regarding their current and future predicted height, as well as the modulating factors; (4) to investigate the relation between perceptions of height and psychosocial functioning in children with GHD.
Materials and methods: The original European QoLISSY scales were translated into Greek following guidelines for linguistic validation and applied to 184 dyads of children 8 to 18 years-old and their parents, as well as to 14 parents of children 4 to 7 years-old in Greece. The field testing responses to the Greek version of QoLISSY were analyzed. Following the validation procedure, in order to evaluate children’s psychosocial functioning, 322 children and adolescents (219 boys) diagnosed with (isolated) GHD with no other underlying disease, treated with growth hormone, as well as one of their parents, were asked to complete the Greek version of the Quality of Life in Short Stature Youth (QoLISSY) questionnaire and the Silhouette Apperception Technique (SAT) questionnaire, as a routine component of their medical visit.
Results: The qualitative analysis of the Greek data provided results consistent with the European sample. The subsequent field-test showed acceptable internal consistency (Cronbach alpha between 0.67-0.93) and high test-retest reliability (Intraclass Correlation Coefficients ≥ 0.70). Correlations with the generic KIDSCREEN questionnaire indicated good convergent validity. Confirmatory Factor Analysis yielded also acceptable results. Higher HRQoL for taller children suggests that QoLISSY was able to detect significant height-related differences.
The scale characteristics for the overall data set identify a high level of quality of life in young respondents, reaching up to 81,8% of the scale for the child- and 74,7% for the parent-reports, with substantial standard deviations indicating the variance across the scale. Regarding gender differences, parents of girls reported higher scores for coping efforts for girls (p=0.006) compared to boys and referred that their children worry less about their future (p=0.033) than parents of boys. Younger children self reported better experiences regarding GH therapy (p=0.005) than adolescents, whereas their parents rated their children higher in levels of Coping (p=0.020). Higher socioeconomic status was positively correlated with children’s Emotional QoL (p=0.037). Regarding the degree of short stature, taller children and adolescents had better HrQoL, both self- and parent-reported, on the scales Physical QoL (pC=0.043), Social QoL (pC=0.031), Emotional QoL (pC=0.004), Coping (pP=0.032) and Total QoL (pC=0.007, pP=0.009). Longer duration of treatment was found to be associated with better self-report Beliefs about stature (p=0.041) and better parent-report Social QoL (p=0.031). Children rated themselves as having higher HrQoL as compared to their parents.
The majority of children and adolescents (71.6%) and their parents (82.5%) overestimated patient’s current height. Similar results emerged for the future predicted height with children and parents overestimating it (91.5% and 64.6% respectively). Younger children (p=0.036) and those whose father had a high educational level (p=0.021) perceived their present height with more accuracy. The same pattern was observed for parent perceptions. Parents of older patients (p=0.01) and those having a low educational level (p=0.032) overestimated youths’ current height to a greater degree. When predictions for adult height were examined, younger age of patients (p=0.037), and fathers’ short stature, mothers’ short stature and both parents’ short stature (p=0.022, p=0.005, p=0.012 respectively), were positively related with overprediction in self reports. Concerning parents’ expectations for their children’s final height, fathers’ short stature, mothers’ short stature or both parents’ short stature (p=0.011, p=0.001, p=0.011 respectively) as well as living in province (p=0.021), were positively correlated with overprediction.
Parents overestimating children’s current height, reported higher levels of Physical QoL (p=0.016), Social QoL (p=0.001) and Total QoL (p=0.005) for their children. They also had a more positive perception for their children’s experience linked to GH treatment (p=0.039) and referred that their children worry less about their future related to their short stature (p=0.024). Accurate predictions for adult height, on behalf of the parents, were related with higher scores for children’s general beliefs about stature (p=0.049).
Conclusions: The Greek version of the QoLISSY questionnaire is psychometrically sound and its use is recommended in further clinical research to ascertain the impact of short stature and treatments in Greek children and families.
Children and adolescents with GHD, report high levels of HRQoL. However, patient-related factors such as gender, age, socioeconomic status and degree of short stature affect their psychosocial functioning. Furthermore, duration of GH treatment plays 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.
Finally, the results of the present study suggest that the majority of GH treated patients and their parents overestimate the child’s current and predicted height. The relation between overestimation of height and better HrQoL poses the question whether increased perceived height leads to better psychosocial adaptation or if it simply consists a defense mechanism.
