Health-related quality of life and depression in Rett syndrome caregivers

Vojnosanitetski Pregled

关键词: Rett syndrome;    caregivers;    mothers;    depression;    quality of life;   

DOI  :  10.2298/VSP1309842S

来源: DOAJ

【 摘 要 】

Background/Aim. Rett syndrome (RTT) is a severe neurodevelopmental disorderprimarily affecting females with an estimated incidence of 1 : 10,000-15,000female births. Currently, there is no specific treatment that halts orreverses the progression of RTT. Therefore, management was mainlysymptomatic, focussed on optimising patient's abilities. The aim of thisstudy 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 49mothers giving care to females with RTT. Caregivers` HRQoL was assessed byusing the SF-36 questionnaire. Clinical severity score (CSS) of RTT patientsand Beck Depression Inventory II (BDI -II) scale were used to quantify RTTseverity and mothers` depression, respectively. Statistical assessmentincluded descriptive statistics, ttest, Pearson correlation coefficient andmultiple logistic regression. Results. The age of mothers ranged from 22 to55 years and of their affected children from 3 to 29 years. Severe depressionwas observed in 15 (30.6%) participants. CSS and BDI - II scores correlatednegatively with all SF- 36 domains and composite scores. Lowest scoringdomains of HRQoL in mothers giving care to RTT children were mental health,vitality and role functioning emotional. Multiple linear regression analysisrevealed that severity of RTT patients` disability (CSS) and caregivers` ageare factors with strongest influence to HRQoL and depression in care givingmothers. Conclusion. Mothers giving care to children with RTT are at highrisk of severe depression and lower HRQoL scores of domains that reflectmental well-being. Results of this study can help in planning subsequentinterventions directed at families dealing with Rett syndrome.

【 授权许可】

Unknown