臨床小児科: オープンアクセス
オープンアクセス

概要

Quality of Life in Children Diagnosed with Non-Classic Congenital Adrenal Hyperplasia

Maria João Silva Ferreira*

Introduction: Non-classical congenital adrenal hyperplasia (NC-CAH) is a chronic disease characterized by excessive androgen production that may negatively affect quality of life (QoL) of affected patients. Pediatric Quality of Life Inventory 4.0 (PedsQL) is a validated tool to assess health-related QoL (HRQoL).
Methods: Cross-sectional study including 19 patients with NC-CAH followed in the pediatric endocrinology department. NC-CAH patients who agreed to participate were included. Anthropometric data was collected. PedsQL™ was applied to the patients and their parents. Patients were divided into four groups according to age:
2-4, 5-7, 8-12 and 13-18 years-old. Control group consisted of healthy individuals from the instrument’s validation studies for the Portuguese population and the standard control population used in the PedsQL validation study.
Results: The only difference found concern the parents’ score results of children aged 8-12, whose results showed physical health and emotional dimension’ scores significantly higher (86.16 ± 9.86 vs 68.90 ± 23.02 p=0.004, 69.17 ± 14.14 vs 65.82 ± 19.24 p=0.004), while psychosocial health’s score and total scale score were significantly lower than the control group (59.99 ± 9.90 vs 69.34 ± 14.07 p=0.047, 73.11 ± 4.65 vs 78.86 ± 16.61 p=0.017).
Conclusion: HRQoL scores are not negatively affected by NC-CAH on most group ages, with the exception of the
parents’ reports on HRQoL of children aged 8-12. Further studies with a greater number of patients are needed to
determine the impact of this chronic disease on the HRQoL of children.