Health-related quality of life in Italian children and adolescents with congenital heart diseases

Abstract

Background Congenital heart disease (CHD) is the most common congenital anomaly at birth, affecting approximately 1% of live births. In recent decades great medical and surgical advances have significantly increased life expectancy, shifting healthcare professionals' and researchers’ interests in patients' Quality of Life (QoL). The main aims of our study were to evaluate generic and condition-specific QoL in a group of Italian children and adolescents with CHD and their parents and examine the level of agreement and directional disagreement between child/adolescent and parents reports on generic and condition-specific QoL. Methods A cross-sectional study was designed with CHD children and adolescents and their parents referred to the Cardiology Department of “Bambino Gesù” Children’s Hospital. The PedsQL scale was used, including generic (PedsQL 4.0) and cardiac-specific modules (PedsQL 3.0) were administered to patients and caregivers. A Kruskal–Wallis test was used to compare generic and cardiac module scores between patients with different ages, CHD diagnoses, and between patients who underwent surgery interventions and/or are currently taking cardiac medications. Results 498 families were enrolled in this study. On average, patients reported a good level of generic and condition-specific QoL, as well as their mothers and fathers. Children aged between 5–7 years old reported lower generic and cardiac-specific total QoL levels than children aged 8–12 years and adolescents (13–18 years). With regard to the agreement, patient-parent agreement on condition-specific QoL ranged from 25 to 75% while on generic QoL, it ranged from 19 to 76%. The highest percentage of disagreement between parents and children was found in patients aged 5–7 years old, both for condition-specific and generic QoL rates. Conclusions Our study contributed to the growing body of knowledge on QoL in CHD, emphasizing the need for these families to receive support from multidisciplinary standardized care, including psychological consultations and support.

Assessment of Quality of Life and Socioeconomic Inequality in Children with Cyanotic Congenital Heart Disease in Sulaimaniyah, Iraq

“…The study found a signi cant difference between CCHD and healthy children in terms of a child while receiving treatment. In this respect, Amodeo et al 2022 reported the same ndings in Italy 45 .…”

Childhood heart disease and parental emotional wellbeing: a predictive model to explain the perception of quality of life in children and adolescents

“…The cardiac-speci c module of the HRQoL questionnaire investigates aspects of the child's health related to their CHD, such as the presence of cardiac symptoms, treatment adherence, and anxiety about treatment (Grimaldi . In their previous study, Amodeo et al (2022) found signi cant differences among six categories of young patients with CHD (i.e., aortopathies (Ao), patients with aortic disease from the aortic valvular lesion to the aortic arch anomalies; tetralogy of Fallot (ToF); univentricular heart (UVH), patients treated with Glenn or Fontan palliation according to the UVH physiology they had; right ventricular-pulmonary artery conduit (RV-PA conduit); transposition to the great arteries (TGA), and other congenital heart disease (oCHD)), which included a miscellaneous of diseases not considered above and the quality of life perceived by patients. Young patients with UVH showed the worst HRQoL levels referred to the cardiac-speci c module overall.…”

Quality of life in children with congenital heart disease (CHD): Systematic review

“…Several topics were discussed based on the review of 11 articles, including 5 articles discussing the relationship between quality of life in children with Congenital Heart Disease and healthy or normal children [8,10,12,13,15], 2 articles discussing quality of life in children with CHD according to patient age group [6,11], 3 articles discussing the relationship between quality of life for children with CHD and the type of CHD severity [5,9,14], and 1 article about the relationship between perceived quality of life between children with CHD and caregivers [7].…”

“…The results of a study by Angeles Fuertes et al in particular are important for clinical practice and future research because they highlight the importance of quality of life assessment in routine clinical practice. This is particularly important for patients aged 5 to 7 years, during the transition from home to primary school and adolescents to support the development of body image and adherence to medical processes [9].…”