A cross-sectional survey and analysis of factors influencing transition readiness in adolescents with congenital heart disease
Background With advancements in medical care,more children with congenital heart disease(CHD)are surviving into adulthood.The readiness for transition from adolescence to adulthood reflects CHD adolescents'ability to transition and manage their disease.Currently,there is a lack of data on transition readiness among Chinese CHD adolescents.Objective To assess the transition readiness of CHD adolescents,understand the current state and transition capabilities of CHD adolescents transitioning to adult care in China,analyze the influencing factors,and provide a basis for developing individualized transition care strategies.Design Cross-sectional survey.Methods We included CHD adolescents aged 10-18 years and their primary caregivers who were followed up in the Department of Cardiothoracic Surgery at Children's Hospital of Fudan University from January 1,2018,to August 31,2023.The transition readiness of CHD adolescents was assessed by collecting data using a researcher-designed general information questionnaire,Self-Management and Transition Readiness Assessment(STARx)questionnaire(both self-report and parent-report versions),the Leuven Knowledge Questionnaire for Congenital Heart Disease(LKQCHD)in Chinese,and the General Self-Efficacy Scale(GSES).Univariate and linear regression analyses were used to identify influencing factors.Main outcome measures STARx questionnaire score.Results A total of 216 questionnaires were distributed.After excluding 64 invalid questionnaires,152 questionnaires were included for analysis.The overall scores of the STARx questionnaire for self-report and parent-report were 36.74±7.95 and 36.36±7.70 respectively,with no significant difference(P=0.557).In total,82.2％(125 cases)of CHD adolescents had low to moderate transition readiness scores(＜44),while only 17.8％(27 cases)had high readiness scores(≥44).Besides,63.2％(96 cases)of primary caregivers preferred follow-up at a children's hospital.Linear regression analysis of factors influencing transition readiness scores indicated that accurate CHD knowledge,age,one-child family,and self-efficacy level were significant factors.Higher levels of readiness were associated with older age,greater CHD knowledge,higher self-efficacy,and being a non-only child.Conclusion The transition readiness of CHD adolescents in China is moderate and mainly influenced by their CHD knowledge,age,and self-efficacy.Additionally,caregivers showed a strong preference for continuing care at children's hospitals.
Congenital heart diseaseTransition managementTransition readinessTransition from pediatric to adult healthcareAdolescents
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