ABSTRACT
Background:
Congenital adrenal hyperplasia (CAH) is a chronic disorder requiring lifelong
therapy. False
perceptions, poor
knowledge, and
social isolation adversely
affect the psychosocial
health and
quality of life of
patients and
caregivers. The study was undertaken to ascertain the
quality of life of
caregivers of
children with CAH.
Method:
A
hospital-based
cross-sectional study enrolled
caregivers of
children diagnosed with CAH where
newborn screening was unavailable.
Quality of life (QoL) was measured using the
WHO-QoL-BREF
questionnaire to compare physical, psychological
health,
social relationships, and
environment.
Results:
Eighteen
children with CAH (9
males), 14
salt-wasting, and 4 simple virilizing CAH with median (IQR) age of 4.3 (2.6, 9.8) years and a follow-up period of 3.8 (1.3, 8.4) years were enrolled. Out of 18
caregivers, 6 were
fathers and 12
mothers with a mean (SD) age of 38 (8) years. The mean (SD) of the total score was 69.2 (10.6); physical, psychological, environmental, and social domain were 69.8 (15.1), 57 (12.6), 64 (14.5), and 65 (9.9), respectively. Physical, psychological, and environmental domain scores were significantly higher in upper-middle than lower-middle socioeconomic strata (P < 0.05) and
similar between
salt-wasting and simple virilizing
phenotypes. There was no significant correlation between QoL scores and duration of
disease (r = 0.257, P = 0.44).
Parents of 7 (38%)
patients discussed
disease with
extended families or neighbors, but none of the
school teachers were informed.
Death (56%),
social acceptance (27%), and
infertility (18%) were the major concerns acknowledged.
Conclusion:
The study reflects the suboptimal
quality of life in
caregivers of
children with CAH. There was no correlation of the duration of
disease with the QoL scores. Psychological and
social relationship scores were poorest, indicating the need to creating more
awareness to remove social
taboos associated with this
disease.