Jo Wray, Sadia Quyam, Holly Clisby, Vicky Kelly, Shahin Moledina
Great Ormond Street Hospital for Children NHS Foundation Trust. Barts Heart and Thorax Centre Psychological Services.
United Kingdom
Pulmonary Circulation
Pulm Circ 2025; 15:
DOI: 10.1002/pul2.70161
Abstract
Pulmonary hypertension (PH) in children requires complex medical management. Health-related quality of life (HRQoL) remains understudied in this population. During an 8-month period children and parents attending PH outpatient appointments completed the generic PedsQL (measuring physical, emotional, social, and school functioning). Parents completed the Hospital Anxiety and Depression scale, a validated measure of anxiety and depression, about their own mental health. Clinical data were extracted from the medical notes. Analyses explored relationships between clinical factors, parental mental health and HRQoL and compared scores with published norms. Parents of 94 of 98 (96%) eligible children with PH and 48 of 54 (89%) eligible children aged ≥ 5 years completed the PedsQL. All HRQoL scores were significantly below healthy norms, with 49% scoring > 2 S.D. below normative means. Physical HRQoL was associated with disease severity and survival outcomes. Multiple regression analyses showed age, learning disability, functional class, and parental depression explained 38% of parent-reported HRQoL variance (F(6, 86) = 7.67; p < 0.001) while learning disability explained 33% of child-reported variance (F(3, 45) = 6.78; p < 0.001). These findings support routine HRQoL evaluation and development of disease-specific measures for paediatric PH.
Category
Quality of Life Associated with Pulmonary Vascular Disease
Symptoms and Findings Associated with Pulmonary Vascular Disease
Age Focus: Pediatric Pulmonary Vascular Disease
Fresh or Filed Publication: Fresh (PHresh). Less than 1-2 years since publication
Article Access
Free PDF File or Full Text Article Available Through PubMed or DOI: Yes