| Research purpose:To understand the quality of life of children with acute lymphoblastic leukemia in Shanghai and to analyze the relationship between demographic factors,treatment-related factors,fatigue,adverse reactions,family relationships,school participation and the quality of life of children with acute lymphoblastic leukemia.The research focuses on the relationship between school involvement and the quality of life of children with acute lymphoblastic leukemiaMethods:(1)Objects:Children who were admitted to hospital from May 1,2009 to August 31,2017 and were diagnosed with acute lymphoblastic leukemia,who were over 2 years of age,except those who had been transferred to hospital,abandoned treatment,and died(2)Research content:demographic factors,treatment-related factors,adverse reactions,fatigue,family relationships,school-related factors,and quality of life of children with acute lymphoblastic leukemia(3)Research Design:This study was a cross-sectional survey and used a self-designed questionnaire“Quality of life Questionnaire for Leukemia Children at a Children Hospital in Shanghai",which was completed online by the caregivers.The content includes the main demographic factors of children and caregivers,self-designed adverse reaction questionnaire,self-designed school participation questionnaire,Pediatric Quality of Life Inventory TM Generic Core Scales(4.0)Chinese version(in addition to the school function module),PedsQL TM Multidimensional Fatigue Scale Chinese version,PedsQL TM Family Impact Module Family Dimensions Chinese version.(4)Statistical analysis:Using SPSS 22.0 and Amos24.0 statistical software,three-dimensional quality of life scores and total score of quality of life as dependent variables,and related factors as independent variables,multi-factor regression models and structural equation models were establishedResult:(1)The total score of quality of life was 63.83± 12.04,the physical function of the quality of life was 68.90±21.24,the emotional function was 67.08± 16.31 and the social function was 73.66± 16.10(2)In terms of total quality of life,total fatigue,cognitive fatigue,and length of hospital stay were negatively correlated with total quality of life(P<0.05).School participation,family relationships,and length of stay were positively correlated with the total socre of quality of life(P<0.05).Compared with B-lymphocytic leukemia patients,the total score of quality of life of patients with T-lymphocytic leukemia was higher(P<0.01)(3)In terms of physical function,the school participation and the time from the first visit were positively correlated with physical function(P<0.05);cognitive fatigue and the age of caregivers were negatively related to physical function(P<0.01);Compared with B-lymphocytic leukemia patients,the physical function of patients with T-lymphocytic leukemia was higher(P<0.01)(4)In terms of emotional function,body fatigue,living in eastern provinces,sleep fatigue and emotional function were negatively correlated(P<0.001),and family relationships and length of stay were positively related to emotional function(P<0.05)(5)In terms of social function,cognitive fatigue was negatively correlated with social function(P<0.001).School participation and family relationship were positively related to social function(P<0.001)(6)The structural equation model showed that the factor load of each potential variable(except for the family relationship and the total quality of life)was statistically significant(P<0.001);fatigue levels and school participation could directly affect the children’s total quality of life(P<0.001),but the family relationship could not directly affect the total quality of life(P>0.05);fatigue(P<0.001),family relationships(P<0.001)and the level of school involvement,all of them were respectively.The correlation coefficient between fatigue and family relationships was-0.51(P<0.001),and the correlation coefficient between fatigue and school participation was-0.49(P<0.001).The coefficient of school involvement and family relationship was 0.24(P<0.001)Conclution:The quality of life of children with acute lymphoblastic leukemia is lower than that of normal children,with social function being the best,followed by emotional function,and physical function being the worst.A good family relationship and a high degree of school participation are conducive to improving the total quality of life of children Cognitive fatigue and general fatigue affect the total quality of life adversely.Fatigue is a common side effect of childhood acute lymphoblastic leukemia.The fatigue of children mainly affects the physical function and emotional function of children;the level of school participation is a favorable factor for physical and social functions;good family relationships have good influence on emotional function and society of children with acute lymphoblastic leukemia. |
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