| PARTⅠGROWTH AND DEVELOPMENT STATUS OF CHILDREN WITH BILIARY ATRESIA IN SOUTHWEST CHINAObjective:To understand the growth and development status of children with biliary atresia（BA）in Southwest China.Methods:The study included 112 children with BA who were diagnosed and received surgery at the Children’s Hospital of Chongqing Medical University from September 1,2019 to December 31,2020.The subjects were given feeding counseling and oral nutritional supplements,and received regular follow-up monitoring of growth and development after discharged.Descriptive statistical methods were used to analyze the basic characteristics of the subjects,non-parametric testing methods were used to analyze differences in Z scores of growth,and Pearson or Spearman correlation tests were used to analyze the correlation between variables.Results:（1）Among the subjects,50.5%of patients had heart problems and small for gestational age infants accounted for 14.3%.The ZW at diagnosis was significantly lower than that at birth（p=0.000）;and the incidence of failure to thrive at liver transplantation increased from diagnosis（13.8%to 34.6%）.（2）Compared with the Z scores at diagnosis,the ZW and ZL at 1 month after the diagnosis were significantly reduced（p=0.030,0.048）;the ZL and ZHC were significantly reduced at 3 months after the diagnosis（p=0.009,0.006）.（3）TheΔZL value at 3 months after diagnosis was negatively correlated with the liver pathological grade（p=0.005）.（4）Compared with the Z scores at liver transplantation,the ZW,ZL,ZHC and ZBMI at 1 month after transplantation were significantly reduced（p=0.000）;the ZW,ZHC and ZBMI at 3 months after transplantation returned to the level at transplantation,but the ZL was still significantly lower（p=0.000）.（5）Less than 30%of those whose energy intake reached the recommended amount during the follow-up process（27.5%at diagnosis,28.6%at 1 month after diagnosis,20.0%at 3 months after diagnosis）.The ZW of those who introduced complementary foods within 3 months after liver transplantation was higher（p=0.042）.（6）The Denver Developmental Screening Tests showed that suspicious/abnormal accounted for 75.0%,with major motor（47.5%）and fine motor（18.8%）developmental delays.Among them,the ZHC of normal decreased less than that of suspicious/abnormal at 1 month after diagnosis（p=0.027）.Griffiths Mental Development Scales showed that 70%of patients had at least one developmental delay at the age of 1,mainly visual function（40.0%）.Conclusion:（1）The incidence of heart problems in children with BA in Southwest China is higher than that in other regions,and BA may increase the risk of intrauterine growth retardation.（2）Children with BA have insufficient physical growth after birth,and linear growth restriction is more obvious.Chronic liver damage is the main factor of theΔZL value,and head circumference may also be related to neurodevelopmental delay.（3）The weight,head circumference and BMI of children with BA can catch up to the level of transplantation at 3 months after surgery,but it takes longer to catch up with length.（4）Children with BA have different degrees of developmental delay at 1 year old,mainly with impaired motor and visual functions.（5）The effects of feeding counseling and oral nutritional supplement after diagnosis is not satisfactory on children with BA,and the feeding methods should be changed if necessary.（6）The introduction of complementary foods was delayed in children with BA.The introduction of complementary foods early after transplantation has a positive effect on weight gain.PART Ⅱ CONSTRUCTION OF FOLLOW-UP MANAGEMENT SYSTEM FOR CHILDREN WITH BILIARY ATRESIA IN SOUTHWEST CHINAObjective: To explore the method for the construction of a follow-up management system for children with BA in Southwest China.Methods: The study included 112 children with BA who were diagnosed and received surgical treatment at the Children’s Hospital of Chongqing Medical University from September 1,2019 to December 31,2020.Carry out follow-up and management of children,and improve and optimize the follow-up and management system.Descriptive statistical methods were used to analyze the follow-up rate,satisfaction,initiative and charity relief effects.Chi-square tests were used to analyze the follow-up rates before and after optimizingthe follow-up system.Results:（1）After optimizing the follow-up and management system,the first month follow-up rate and long-term follow-up rate were significantly higher than before（p=0.006,0.004）.96.7% of the parents were satisfied with the follow-up and management system,and 53.3% of the parents reported that follow-up was necessary,36.7% of parents reported that they had time and traffic difficulties to follow-up.（2）The survey showed that charity relief had a positive effect on the treatment of children and the confidence of parents.Conclusion:（1）BA families in the southwest do not have enough awareness of the importance of follow-up,health promotion and education are needed to be strengthen.（2）Based on internet technology,establish an integrated online and offline follow-up management system can simplify patient procedures,increase patient compliance with re-examination,and improve the follow-up rates.（3）The significance of charity relief in chronic diseases is not only financial support,but also stabilizing the family’s confidence in treatment. |
