Quality of Life in Children Diagnosed With Non- classic Congenital Adrenal Hyperplasia

Autores da FMUP

• Susana Moreira Ferreira

  Autor

• Davide Maurício Costa Carvalho

  Autor

Participantes de fora da FMUP

• Ferreira, MJ
• Moita, R
• Canha, M
• Costa, C.
• Almeida, P
• Castedo, JL
• Correia, C.

Unidades de investigação

• Medicina

• Patologia

Abstract

Background Non-classical congenital adrenal hyperplasia (NC-CAH) is a chronic disease characterised by excessive androgen production that may negatively affect the quality of life (QoL) of affected patients. Pediatric Quality of Life Inventory 4.0 (PedsQLTM) is a validated tool to assess health-related QoL (HRQoL). Methods A cross-sectional study including 19 patients with NC-CAH was carried out in the pediatric endocrinology department. NC-CAH patients who agreed to participate were included. Anthropometric data was collected. PedsQLTM 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. The control group consisted of healthy individuals from the instruments validation studies for the Portuguese population and the standard control population used in the PedsQLTM validation study. Results The only difference found concerns the parents score results for children aged 8-12, which 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 healths 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 in most group ages, with the exception of the parents reports on HRQoL for 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.

Keywords

• children quality of life; health related quality of life; non classical congenital adrenal hyperplasia; congenital adrenal hyperplasia; quality of life