观察研究
医学
主动脉缩窄
生活质量(医疗保健)
主动脉
儿科
重症监护医学
内科学
护理部
作者
Francesco Milo,Giulio Calcagni,Stella Maiolo,Fabrizio Drago,Stefano Vicari,Teresa Grimaldi Capitello,Deny Menghini,Ângela Garcia Rossi
标识
DOI:10.1080/13548506.2024.2348820
摘要
Advancements in early diagnosis and paediatric cardiac surgery have improved the long-term survival of patients with congenital heart disease, necessitating a thorough assessment of their health-related quality of life (HRQoL). This study aimed to assess HRQoL in paediatric patients with coarctation of the aorta (CoA) (both as reported by patients and caregivers), and to evaluate associated factors. Patients aged 5-18 years diagnosed with CoA and their parents were enrolled at Bambino Gesù Children's Hospital between September 2016 and December 2017. Socio-demographic characteristics were recorded using a family form, and the Pediatric Quality of Life Inventory (PedsQL) 3.0 cardiac module was used to evaluate HRQoL. Clinical data were retrieved from medical chart reviews. In this observational study, sixty-five pediatric patients (39 males, median [IQR] age 12 [9-14]) with CoA and their parents (65 mothers and 65 fathers) were enrolled. These patients exhibited overall good HRQoL. Mothers reported significantly lower total HRQoL scores compared to patient self-reports (
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