Quality of Life in Turkish Children with Interstitial Lung Disease: Insights from the National ChILD Registry
Bildiriler > Özet Bildiri
Yazarlar: Handan Kekec, Tugba Sismanlar Eyüboğlu, Ayse Tana Aslan, Ozge Ulgen, Aslıhan Ozcaglar, Zeliha Basak Polat, Betul Bankoglu Parlak, Aysen Bingol, Seyda Karabulut, Ela Erdem Eralp, Cıgdem Korkmaz, Berrak Oztosun, Gökçen KARTAL ÖZTÜRK, Bahar Girgin Dindar, Meltem Akgul Erdal, Umay Kavgacı, Esin Gizem Olgun, Fatma Nur Ayman, Zeynep Seda Uyan, Beste Ozsezen, Tugba Ramaslı Gursoy, Pelin Asfuroglu, Mahir Serbes, Mina Hızal, Halime Nayır Buyuksahın, Gozde Cavıldak Karaaslan, Ebru Yalcın, Nagehan Emiralioglu, Yasemin Gokdemir, Sevgi Pekcan, Ayse Ayzıt Kılınc Sakallı, Saniye Girit, Nazan Cobanoglu, Guzin Cinel, Berna Oguz, Diclehan Orhan, Ahmet Cevdet Ceylan, Nural Kiper
Paediatric rare lung and airway disease, , , Uluslararası, Özet Bildiri, ss PA3817-PA3817
DOI: 10.1183/13993003.congress-2025.pa3817
Özet
Introduction: This study, the first of its kind in this population, evaluates health-related quality of life (HRQoL) in children with childhood interstitial lung disease (ChILD) and their families using data from the Turkish National ChILD Registry. Methods: As of January 2024, data from 17 centers were analyzed. Patients aged 1 month to 18 years and their families completed the Pediatric Quality of Life Inventory (PedsQL™ 4.0 Generic Core Scales) and PedsQL™ 2.0 Family Impact Module through face-to-face interviews. Higher scores indicate better HRQoL. The patients' PFT and Fan scores were recorded. Results: The study included 175 patients (90 girls), with a median age of 93 (13–214) months. FEV₁% positively correlated with the PedsQL™ Physical Health Summary Score, Parent-Reported Physical Health Summary Score, Psychosocial Health Summary Score, and total score (p=0.007, r=0.608; p=0.025, r=0.527; p=0.032, r=0.522; p=0.009, r=0.612). The Fan score negatively correlated with PedsQL™ scores (p<0.001). No significant correlation was found between FEV₁% and the Family Impact Module total score, though a weak negative correlation with the Fan score was noted (p<0.001–0.01). Conclusion: Lung function strongly correlates with HRQoL, emphasizing the impact of disease severity on physical and psychosocial well-being. These findings highlight the need for multidisciplinary care and psychosocial support to enhance the quality of life in children with ChILD and their families.