Abstract Ref Number = APCP892
IDENTIFICATION OF FACTORS AFFECTING QUALITY OF LIFE AMONG THALASSEMIA CHILDREN AT DORIS SYLVANUS PUBLIC HOSPITAL, PALANGKARAYA, INDONESIA
NiMade Yuliari,Mutiara Dara Ratih,Helena Jelita,Donna Novina Kahanjak,Prabandari Kusumaningtyas
Pediatric Department Doris Sylvanus Public Hospital Palangkaraya Indonesia General Practitioner, Kalawa Atei Psychiatric Hospital, Bukit Rawi Indonesia Oral and Dental Department, Medicine Faculty of Palangkaraya University, Indonesia Physiology Department, Medicine Faculty of Palangkaraya University, Indonesia Pediatric Department, Doris Sylvanus Public Hospital, Palangkaraya, Indonesia
Background : Improving supportive treatment in Thalassemia patients receiving blood transfusion and iron chelation increases their life expectancies. Unfortunately, this condition will make them face more social-culture problem. Little data exists investigating the Health Related Quality of Life (HRQoL) of thalassemia children. This study was aimed to identify factors affecting quality of life such as demographic, age at diagnosis, clinical, blood transfusion, and chelation characteristics among thalassemia children.
Material : We conducted cross sectional study during March to April 2018, at Doris Sylvanus Public Hospital. 35 patients receiving blood transfusion were enrolled in this study. HRQoL was assessed using the PedsQL TM 4.0 Generic Core Scale questionnaire, version 4.0, for children aged 5-18 years and scores were categorized into either normal or impaired quality of life using age-specific cut-offs. This tool measures 4 domains of life quality: physical, emotional, social, and school function. Data were analyzed using SPSS version 16.
Results : Girls and boys were almost equal. The median (IQR) age was 9 (5-18) years and the median (IQR) age at diagnosis was 1 (0.4-12) years. The mean Hb level was 6.39±0.97 g/dL. 34.3% patients had low HRQoL, 57.14% had low physical function and 54.3% had low school function. The mean HRQoL score was 80.58±12.35, and the mean physical, emotional, social and school function scores were 79.25±18.75, 86±17.09, 90.71±11.32, and 64.65±18.61, respectively. Facies Cooley were significantly correlate with HRQoL (P=0.020). But, gender, age, residence, children and parental education, economic status, age at diagnosis, hepatosplenomegaly, Hb level, blood transfusion and iron chelation were not associated with HRQoL.
Conclusions : One third children with thalassemia had low HRQoL and more than half of subjects had low physical and school function. There were significant differences between children having facies cooley and HRQoL. Therefore, training program and psychosocial support should be more focus on children having low life quality, especially patient with facies cooley.
Keywords: HRQoL Children Thalassemia