A Multicenter Study On The Fertility Willingness Of Patients With Autosomal Dominant Polycystic Kidney Disease And Their Perceived Status On Preimplantation Genetic Testing

Objective To provide the fertility intention of Chinese patients with autosomal dominant polycystic kidney disease(ADPKD)at childbearing age and their knowledge of PGT technology.To analyze the factors influencing the fertility desire and the choice of PGT technology of Chinese childbearing age ADPKD patients.Methods To collect basic demographic data,quality of life,social-support,fertility willingness,and acceptance of PGT technology for blocking polycystic kidney disease(PKD)among patients aged 15-50 years in 7 tertiary A hospitals from January 2018 to December 2018 by means of questionnaires.Results In this study,327 questionnaires were collected by convenient sampling,of which 314 were valid,with an effective rate of 96.3%.The effective subjects are 166males(52.9%) and 148 females(47.1%) with an average age of 35.7±8.2 years.The average eGFR was 88.5±50.4ml/min.The average score of physical Domain,Emotional Domain and Fatigue Domain is 1.6±0.6,2.0±0.8and 1.8±0.8 respectively.The average total score of social-support is 38.3±7.9.124(39.5%) cases have the desire to bear or reproduce,148(47.1%) cases have no desire,39(12.4%) cases have uncertainty,and 3(1.0%) cases have not been filled in.It shows that the ADPKD patients of childbearing age in China are at a low level of disease impact,the health-related quality of life is acceptable,and they have a relatively satisfactory degree of social-support,but their fertility intention is low.Before this questionnaire,177(56.4%) cases knew that the inheritance of PKD gene could be blocked by PGT technology.If they have children later on,255(81.2%) cases would choose PGT technology.The first major concern for PGT technology is technical safety(32.6%).If PGT and PND can be included in the medical insurance reimbursement,the number of people choosing to have a child increased to 203(64.7%).The results show that ADPKD patients of childbearing age in China have a high acceptance and demand for new technology of blocking genetic detection of polycystic kidney disease,but their awareness is low,and they are still worried about the safety and accuracy of the technology.The cost problem is a big economic burden and concern.Single factor?~2 test analysis show that the age,CKD stage,education level,marital status,whether they were only children,patients'health-related quality of life,social-support,PGT awareness and PND awareness have statistical differences on the impact of fertility intention.Logistic regression analysis showes that the fertility intention of PKD patients is influenced by age and education level.Conclusions Due to the fear of inheritance of polycystic kidney disease to the next generation and insufficient knowledge of interruption techniques,fertility willingness of ADPKD patients of childbearing age in China is low.Improving the quality of life of patients,strengthening the propaganda of knowledge related to PKD blocking genetic testing,and reducing the economic burden of related technologies can effectively improve the fertility intention of patients.We should pay special attention to the patients aged 25-34 who are in the best childbearing age,so as to avoid the patients of this age missing the best childbearing age.