Key result
Narrative case highlights lifelong psychosocial and medical challenges in adult congenital heart disease requiring holistic care.
Why the study?
Living with congenital heart disease involves lifelong medical and psychosocial challenges that impact health-related quality of life and require ongoing management and resilience.
Case Report
Provides a patient perspective on the lifelong medical and psychosocial challenges of congenital heart disease and heart failure, emphasizing the need for holistic care.
Patient perspectives on congenital heart disease warrant clinical consideration; leaves open translation into guidelines pending larger studies.
Congenital heart disease presents lifelong medical and psychosocial challenges, requiring ongoing management, adaptation and resilience. This patient perspective explores the experience of living with Tetralogy of Fallot and a bicuspid aortic valve, focusing on heart failure, the often-invisible nature of congenital heart disease as a disability, and its impact on health-related quality of life. A first-person narrative is integrated with current research evidence to highlight challenges including complex healthcare navigation, financial and employment-related burden, and the importance of individualised patient-centred care. This article advocates for a more proactive approach to congenital heart disease management, emphasising the need for tailored health-related quality-of-life assessments, greater professional awareness of psychosocial needs, ongoing specialist education for healthcare professionals, and stronger system-level support to improve long-term outcomes for adults living with congenital heart disease. It highlights the importance of holistic, multidisciplinary care that extends beyond survival to prioritise quality of life.
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Habibi et al. (2026) conducted a case report in Congenital heart disease, Tetralogy of Fallot, bicuspid aortic valve, heart failure. A first-person narrative integrated with research evidence highlights the lifelong medical and psychosocial challenges of living with congenital heart disease and advocates for holistic care.