The research group led by Professor Satoshi Yasuda and Associate Professor Shunsuke Tatebe of the Graduate School of Medicine at Tohoku University conducted a multicenter cross-sectional study to clarify the health-related quality of life (HRQOL) of adult patients with congenital heart disease and announced that they had found the cause of declining QOL. Their observation was based on their analysis of clinical data from patients with multiple adult congenital heart-diseases (ACHDs) at Tohoku University Hospital and other treatment centers in Japan. The decline in HRQOL was particularly evident among younger generations. Such factors as unemployment, limited participation in physical education during childhood, and smoking were associated with the decline. The study is expected to lead to the development of intervention programs. Study findings were published in the September 5, 2023 issue of Circulation Journal.
With improved treatment outcomes for congenital heart disease that develops in childhood, the number of patients reaching adulthood is increasing in number worldwide. Chronic heart disease conditions impose restrictions on daily life depending on their severity and often cause psychosocial difficulties. Because of this attention has been focused on the need for care and support to improve HRQOL. In the 2017 comparative study, HRQOL among adult patients with congenital heart disease was examined for those affected in 15 countries (including Japan) over four continents other than Africa. Patients in Japan exhibited the poorest HRQOL. Previous studies, which were a relatively small-scale, did not report any results regarding HRQOL improvement.
Thus, the research group aimed to clarify factors related to HRQOL using the database from four facilities: Tohoku University Hospital as a representative facility and three other ACHD treatment centers. Hence, the multicenter cross-sectional study for ACHD diagnostics was conducted. Using the international standard, the MOS Short-Form 36-Item Health Survey (SF-36), to evaluate HRQOL, the researchers calculated scores for the 'physical health' and 'mental health' of 1,025 adult patients with congenital heart disease (average age: 34, ratio of women: 54%). The correlation among these factors, the clinical factors, and the social/living environmental factors were examined with linear regression analysis. Further, HRQOL in adult patients with congenital heart diseases was compared with that of the general population (public standard values). The SF-36 consists of 36 questions and measures HRQOL comprehensively while excluding special diseases. Eight dimensions are measured, and scores for 'physical health' and 'mental health' can be calculated.
As a result, HRQOL among adult patients with congenital heart disease was found to be significantly lower than that of the general population. The decline was particularly noticeable among younger generations.
An additional finding was that poor physical health was associated with unemployment and limited participation in physical education and athletic clubs during childhood, even after making adjustments for clinical and social environmental factors. Smoking, being a student, and living with a large family were involved in the decline in mental health.
The associated factors identified here may be used as targets for intervention programs and supportive measures to improve poor HRQOL. In the future, the research group aims for the development of intervention programs for pediatric patients.
Yasuda stated, "The difficulty in intervention research on pediatric patients is that it takes about 10 years to obtain results. In the future, we would like to investigate the relationship between the prognosis of ACHD (occurrence of cardiovascular complications) and HRQOL. We also think that our future research will determine whether active participation in physical activities, such as exercise—even during adulthood—can improve [one's] QOL and prognosis."
Publication: Circulation Journal
Title: Clinical and Sociodemographic Factors Associated With Health-Related Quality of Life in Patients With Adult Congenital Heart Disease — A Nationwide Cross-Sectional Multicenter Study —
This article has been translated by JST with permission from The Science News Ltd. (https://sci-news.co.jp/). Unauthorized reproduction of the article and photographs is prohibited.