Vojnosanitetski pregled 2013 Volume 70, Issue 9, Pages: 842-847
https://doi.org/10.2298/VSP1309842S
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Cited by
Health-related quality of life and depression in Rett syndrome caregivers
Sarajlija Adrijan (Mother and Child Health Institute of Serbia “Dr Vukan Čupić”, Belgrade)
Đurić Milena (Mother and Child Health Institute of Serbia “Dr Vukan Čupić”, Belgrade + Faculty of Medicine, Pediatrics Cathedra, Belgrade)
Kisić-Tepavčević Darija (Faculty of Medicine, Institute of Epidemiology, Belgrade)
Background/Aim. Rett syndrome (RTT) is a severe neurodevelopmental disorder
primarily affecting females with an estimated incidence of 1 : 10,000-15,000
female births. Currently, there is no specific treatment that halts or
reverses the progression of RTT. Therefore, management was mainly
symptomatic, focussed on optimising patient's abilities. The aim of this
study was to investigate factors influencing health-related quality of life
(HRQoL) and depression in mothers who care for children with Rett syndrome
(RTT) in Serbia. Methods. The cross-sectional study was conducted on 49
mothers giving care to females with RTT. Caregivers` HRQoL was assessed by
using the SF-36 questionnaire. Clinical severity score (CSS) of RTT patients
and Beck Depression Inventory II (BDI -II) scale were used to quantify RTT
severity and mothers` depression, respectively. Statistical assessment
included descriptive statistics, ttest, Pearson correlation coefficient and
multiple logistic regression. Results. The age of mothers ranged from 22 to
55 years and of their affected children from 3 to 29 years. Severe depression
was observed in 15 (30.6%) participants. CSS and BDI - II scores correlated
negatively with all SF- 36 domains and composite scores. Lowest scoring
domains of HRQoL in mothers giving care to RTT children were mental health,
vitality and role functioning emotional. Multiple linear regression analysis
revealed that severity of RTT patients` disability (CSS) and caregivers` age
are factors with strongest influence to HRQoL and depression in care giving
mothers. Conclusion. Mothers giving care to children with RTT are at high
risk of severe depression and lower HRQoL scores of domains that reflect
mental well-being. Results of this study can help in planning subsequent
interventions directed at families dealing with Rett syndrome.
Keywords: Rett syndrome, caregivers, mothers, depression, quality of life