Abstract

Objectives: The importance of patient-reported health assessment as a critical measure of cardiovascular health has been emphasized. In adults with congenital heart disease (ConHD), geographic differences in patient-reported health are assumed, but international studies using a uniform methodology are non-existent. We sought (1) to explore patient-reported health in an international sample of adults with ConHD, and (2) to investigate the association between patient characteristics and patient-reported health. Methods: In a cross-sectional study, 4,028 patients (median age=32 y; 53% women; 26% mild, 48% moderate, 26% complex defects) from 15 countries worldwide were included. Patient-reported health was assessed using the SF-12, yielding a Physical Component Summary (PCS) and a Mental Component Summary (MCS). Patient characteristics included sex, age, marital status, educational level, employment status, ConHD complexity, and patient-reported New York Heart Association (NYHA) class. Multivariable linear regression analysis was performed. Results: Mean PCS was 77.2 ±20.9 and mean MCS was 72.1 ±19.0, on a scale 0-100. Fig 1 shows the PCS and MCS per country (flags) and per disease complexity (lines). Malta and Sweden have the highest scores; and France, Taiwan and India have the lowest scores. Lower PCS (worse physical health) was significantly associated with female sex; older age; lack of employment; being divorced or widowed; less education; greater disease complexity; and worse NYHA class (adj. R 2 =0.512). Lower MCS (worse mental health) was significantly related to female sex; lack of employment; being divorced or widowed; having complex ConHD; and worse NYHA class (adj. R 2 =0.234). Conclusions: International variation in patient-reported health is confirmed. The detection of both medical and sociodemographic correlates of perceived health status allow clinicians to identify patients at risk for poor health and to target resources accordingly.

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