Health-Related Quality of Life in Adolescents and Young Adults with Congenital Heart Disease and Its Predictors, Including Subjective Transition Readiness to Adulthood.

Abstract

Although international studies have examined the health-related quality of life (HRQoL) of adolescents and young adults (AYAs) with congenital heart disease (CHD), those focusing specifically on predictors including transition readiness to adulthood remain limited, particularly in Japan. This study aimed to evaluate HRQoL among AYAs with CHD and its predictors. This cross-sectional survey included 86 participants with CHD from 4 outpatient pediatric cardiology clinics and a parents' peer support group in Japan. The MOS Short-Form 36-Item Health Survey (SF-36) was conducted, and information was obtained on demographics, physical conditions, and participants' transition readiness assessment. The three SF-36 component summary scores as dependent variables were compared against standard values and analyzed using multiple linear regression analyses. Participants' mean age was 21.3 years (standard deviation = 3.6). Compared to national standard values, component scores showed no apparent differences, except in a lower role/social component summary in females. The presence of arrhythmia and cyanosis, New York Heart Association (NYHA) functional classification, physical disability certification grade, and a transition readiness item together accounted for 36.1% of the variance in the physical component summary. Families living together, CHD-related surgery experience within the last 3 years, and one transition readiness item explained 19.8% of the variance in the mental component summary. Participants' sex and NYHA explained 13.6% of the variance in RCS. Physical conditions and subjective transition readiness partially predicted the HRQoL of AYAs with CHD. Females may be aware that being unable to fulfill expected social roles may prevent them from achieving optimum HRQoL.