Factors Affecting the Quality of Life of Children With Transfusion-Dependent Thalassemia: A Cross-Sectional Study.
Ika Purnamasari, Candra Dewi Rahayu, Tantut Susanto, Pratiwi Rita Peperawati, Amanah Supriyati
Abstract
Open AccessOBJECTIVE: This study aimed to identify the factors affecting the quality of life (QoL) of children with transfusion-dependent thalassemia. MATERIALS AND METHODS: A cross-sectional study was conducted on 38 hospitalized pediatric patients with thalassemia at two regional hospitals in Indonesia. We used demographic and anthropometric data, as well as the Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL), to collect the data. RESULTS: The median age of the participants was 11 years (range, 2-18), with a median age at diagnosis of 12.5 months (2 - 84). The average hemoglobin (Hb) level was 8.47 g/dl, and 34% of the patients had blood type O. The interval between blood transfusions was 23.74 days, with a median number of transfusions of 200.5 (range, 22 - 405). The median current weight was 25 kg (range, 9.5 - 50 kg). More than half of the fathers (52.6%) and mothers (50%) of the children with thalassemia had completed only elementary school. The mean total QoL score reported by children was 82.69±13.38, and by parents, 82.6±11.27. Among the PedsQL domains, the children reported the highest scores in social functioning (89.86±15.48) and the lowest in school functioning (74.21±18.06). Similarly, parents reported the highest score in social functioning (91.05±12.95) and the lowest in school functioning (78.42±13.9). Multivariable analysis showed that Hb level and current weight were significantly associated with QoL in children with thalassemia. CONCLUSIONS: The QoL of children with thalassemia is generally good and is influenced by their current body weight and Hb levels.