CHILDHOOD interstitial lung diseases (chILD) are a group of rare, chronic respiratory disorders characterised by inflammation and scarring of the lung tissue. Symptoms can include difficulty breathing, chronic cough, and poor growth, and treatment options are limited. Evaluating health-related quality of life (HRQoL) is increasingly important for monitoring patient wellbeing and guiding care strategies.
Hospital Admissions Linked to Lower Quality of Life
A study drawing on data from the chILD-EU Register assessed HRQoL in 424 children across 10 European countries. Caregivers completed both a disease-specific HRQoL questionnaire and the generic Pediatric Quality of Life Questionnaire (PedsQL) 4.0. Scores were transformed to a 0–100% scale for analysis. The research found that recent inpatient medical care had the strongest association with reduced HRQoL. Children admitted to hospital in the previous 3 months scored 11–14% lower on HRQoL measures, highlighting the physical and emotional toll of intensive medical treatment.
Growth Impairment Reduces Wellbeing in Childhood Interstitial Lung Disease
Failure to thrive, defined as insufficient growth or weight gain in children, was also strongly associated with poorer HRQoL. Affected children scored 9–12% lower on both the childhood interstitial lung disease-specific and generic HRQoL questionnaires. These findings suggest that growth impairment, often linked to disease severity, significantly affects daily functioning, social participation, and overall wellbeing.
Pulmonary Function Shows Weak Correlation
Among 162 children old enough for pulmonary function testing, the study observed only a weak correlation between pulmonary function testing results and HRQoL scores. This indicates that conventional lung function metrics may not fully capture the patient experience, reinforcing the need for patient-reported outcome measures in routine clinical care.
Implications for Clinical Practice
The study shows the importance of targeting modifiable factors such as hospitalisation burden and nutritional status to improve quality of life in children with childhood interstitial lung disease. Future interventional research is needed to determine whether strategies that prevent frequent admissions or support healthy growth can enhance HRQoL outcomes, providing both clinical and psychosocial benefits for patients and families.
HRQoL in childhood interstitial lung disease is strongly influenced by prior inpatient treatment and failure to thrive, rather than lung function alone. Integrating HRQoL assessments into routine care could help clinicians identify at-risk patients and prioritise interventions that address both medical and developmental needs.
Reference
Griese M et al; chILD-EU collaborators. Health-related quality of life in childhood interstitial lung disease. Eur Respir J. 2025; DOI:10.1183/13993003.01777-2025.
