Niinomi Kazuteru, Yoshikawa Shoji, Sato Toshiaki, Omori Hiroko, Miyashita Kayoko
Department of Integrated Health Sciences, Nagoya University Graduate School of Medicine, 1-1-20 Daiko-Minami, Higashi-ku, Nagoya, Aichi, 461-8673, Japan.
Faculty of Nursing, Shijonawate Gakuen University, Daito, Osaka, Japan.
Pediatr Cardiol. 2025 Sep 20. doi: 10.1007/s00246-025-04033-x.
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.
尽管国际上已有研究探讨了先天性心脏病（CHD）青少年及青年成人（AYA）的健康相关生活质量（HRQoL），但专门针对包括成年过渡准备情况等预测因素的研究仍然有限，在日本尤其如此。本研究旨在评估患有CHD的AYA的HRQoL及其预测因素。这项横断面调查纳入了来自日本4家儿科心脏病门诊及一个家长同伴支持小组的86名CHD患者。采用医学结局研究简明健康调查量表（SF - 36）进行调查，并收集了人口统计学信息、身体状况以及参与者的成年过渡准备情况评估信息。将作为因变量的SF - 36三个分量表总分与标准值进行比较，并使用多元线性回归分析进行分析。参与者的平均年龄为21.3岁（标准差 = 3.6）。与国家标准值相比，各分量表得分除女性的角色/社会分量表总分较低外，无明显差异。心律失常和发绀的存在、纽约心脏协会（NYHA）心功能分级、身体残疾认证等级以及一个成年过渡准备项目共同解释了身体分量表总分36.1%的变异。共同居住的家庭、过去3年内与CHD相关的手术经历以及一个成年过渡准备项目解释了心理分量表总分19.8%的变异。参与者的性别和NYHA分级解释了角色受限分量表（RCS）13.6%的变异。身体状况和主观成年过渡准备情况部分预测了患有CHD的AYA的HRQoL。女性可能意识到无法履行预期的社会角色可能会阻碍她们实现最佳的HRQoL。
