Health-related quality of life and its influencing factors in children with β-thalassemia major and their parents / 中华实用儿科临床杂志

ABSTRACT

Objective To evaluate the health-related quality of life (HRQoL) in children with β-thalasse-mia major and their parents,and to analyze its affecting factors.Methods PedsQLTM 4.0 generic core scale and a demographic questionnaire were used to assess HRQoL in 45 children with β-thalassemia major and their parents,which were between 5 and 12 years old,had received blood transfusion in Chengdu Women and Children's Central Hospital during 2016.Results The total summary score of patients' HRQoL was (74.58 ± 7.29) score,in which,the social functioning subscale score was the highest,and school functioning subscale score was the lowest.The total summary score of parents' HRQoL was (64.43 ± 11.54) score,and the difference was statistically significant (P ＜ 0.05).Parents' s core of the psychosocial health [(69.03 ± 12.24) score],the emotional functioning [(67.78 ± 12.67)score]and the School functioning [(57.92 ± 11.61) score]were significantly lower than those of children[(78.19 ±13.42) score,(83.75 ±9.05) score,(69.58 ± 10.30) score],and the differences were statistically significant(all P ＜0.05).The HRQoL of children was positively correlated with onset age of anemia and hemoglobin (Hb) level before transfusion (r =0.771,0.824,all P ＜ 0.01),but which was negatively correlated with iron chelation therapy (r =-0.573,P ＜ 0.01).In contrast,gender,frequency of blood transfusions during the previous 3 months,the type of blood transfusion and iron chelation treatment were not significantly related to HRQoL among these patients.All of these factors were not related to the HRQoL of their parents(P ＞ 0.05).A multiple regression analysis revealed that the HRQoL of children with β-thalassemia major was significantly correlated with onset age of anemia(P =0.005),Hb level before transfusion (P =0.026) and iron chelation therapy (P =0.000).Conclusions The HRQoL of children with β-thalassemia major and their parents were remarkably low.Comprehensive programs including social support,medical service and psychological care should be provided for these children and their parents.