American Research Journal of Cardiovascular Diseases

Introduction: Congenital heart diseases (CHD) in low- and middle-income countries, remains a leading cause of mortality and morbidity amongst children and adolescents due to the patients and family’s inability to access diagnostic and surgical care. In the last century, however, survival has improved, but there remains scarce evidence in Africa of the health-related quality of life (HRQoL) among these affected children.

Objective: This study set out to assess the HRQoL and its determinants in this group of children with CHD presenting at a tertiary referral hospital in Kenya.

Patients and Methods: This was a hospital based cross-sectional study at the Moi Teaching and Referral hospital, Kenya conducted between November 2023 and June 2024. The participants were children and adolescents aged 0-18 years, who had a confirmed echocardiographic diagnosis of congenital heart disease, as well as being on follow up for at least 6 months in the cardiology clinics. The recruitment was done consecutively. HRQoL was assessed using age-appropriate EuroQol instruments (EQ-5D-Y and EQ-5D-5L). The primary outcome was overall HRQoL, categorised using visual analogue scale thresholds. Sociodemographic and clinical data were collected using structured tools. Associations were evaluated using χ² tests and multivariable logistic regression, with significance set at p<0.05.

Results: A total of 107 participants was included (median age 4.0 years [IQR 1.4–10.0]; 54.2% male). The commonest lesion was acyanotic CHD (81.1%), with ventricular septal defect (32.7%), atrial septal defect (22.4%), and patent ductus arteriosus (16.8%) being the most prevalent defects. Only 24.3% of the participants had had Surgical correction performed on them.

Amongst all the participants, 72.9% had optimal HRQoL, 10.3% suboptimal, and 16.8% poor HRQoL. Many of the children and adolescents reported no limitations in mobility (86.9%) or self-care (87.9%), however, substantial impairments were observed in usual activities (44.8%), pain or discomfort (49.6%), and anxiety or depression (42.1%).

CHD-related hospital admissions (p=0.045) and comorbidities (p=0.005) were significantly associated with poorer HRQoL. Functional impairments, including reduced mobility (p<0.001), self-care limitations (p=0.010), impaired usual activities (p=0.034), pain or discomfort (p=0.001), and anxiety or depression (p=0.014)—were strongly associated with reduced HRQoL. In contrast, age at diagnosis, sex, surgical intervention, and disease severity (Ross heart failure classification) were not significantly associated with HRQoL.

Conclusion: The overall quality of life in this cohort was reported as satisfactory, however many of the participants experienced significant functional and psychosocial impairments. These findings highlight the need for integrated, patient-centred care models in resource-limited settings that extend beyond survival and anatomical correction to address psychosocial wellbeing and functional outcomes. Strengthening access to early diagnosis, reducing hospitalizations, and integrating mental health support into paediatric cardiology services are critical to optimize quality of life of pediatric patients with CHD.

Keywords: Congenital Heart Disease; Children and Adolescents; Health- Related Quality of Life; Resource Limited Settings.