Health-Related Quality of Life, Challenges, and Experiences of Patients With Congenital Heart Disease After Cardiac...

In Pakistan, where health care resources for congenital heart disease (CHD) are expanding, this study aimed to assess the health-related quality of life (HRQoL), challenges, and experiences of patients with CHD after cardiac catheterization. Using a mixed-methods approach, quantitative arm compared the HRQoL of patients with CHD with that of age-matched siblings identified predictors of low HRQoL scores, and qualitative arm explored patient's perceptions of quality of life, the challenges, and their experiences.

In this prospective, cross-sectional study conducted at The Aga Khan University Hospital, quantitative data were collected via pediatric quality-of-life questionnaires from 120 case-control pairs, while qualitative insights were gathered through semistructured interviews. Data analysis used descriptive stats, paired t tests, and content analysis for HRQoL themes.

A total of 320 interviews were analyzed, including 120 patients with CHD, 120 age-matched siblings, and 80 parents. Quantitative data revealed high scores with no significant HRQoL differences between patients with CHD and controls. Minor differences were observed in physical and emotional domains, and higher-risk patients showed few concerns in cardiac-related HRQoL. Predictors such as age at diagnosis and Procedural Risk in Congenital Cardiac Catheterization (PREDIC³T) category were associated with low HRQoL scores. Qualitative thematic analysis highlighted the importance of physical and mental well-being, the impact of financial stability, and the need for empathetic communication from health care providers.

This study found high HRQoL scores in patients with CHD after cardiac catheterization, with significant associations of low scores to late age at diagnosis and PREDIC³T categories. Despite these positive outcomes, challenges like access to care and national support highlight the need for systemic improvements.