Development and validation of a health‐related quality of life questionnaire for pediatric patients with interstitial lung disease

Abstract

The results indicate the reliability and validity of the chILD-QoL for pediatric patients with interstitial lung diseases. It can be used for screening and monitoring subjective health status as perceived by the patients and/or their caregivers, as well as for evaluation of health-related quality of life in clinical trials and intervention research.

Health‐related quality of life in infants and children with interstitial lung disease

“…In this study, the high response rate (88%) of children over 8 years old confirmed their great interest in taking part in the assessment of their condition. The overall response rate (70%) is comparable with other QoL studies . The main finding of this study is the confirmation that HR‐QoL is significantly impaired in chILD.…”

“…HR‐QoL questionnaires should also be more widely used as a health outcome in clinical trials. For chILD, Niemitz et al recently proposed a modified QoL questionnaire based on the Generic PedsQL with more disease‐specific items (5 to 11 questions according to the age of the child). This first chILD‐specific HR‐QoL demonstrated moderate to high correlations with the generic PedsQL, depending on the dimensions and the ages.…”

“…18 Generic QoL using validated questionnaires is a necessary step to assess a specific pediatric population's HR-QoL and to provide insights to create or improve a chILD specific QoL questionnaire such as the one recently proposed by the German group. 19 This strategy has already been used to validate specific pediatric QoL questionnaires for other chronic lung diseases such as cystic fibrosis and asthma. [20][21][22][23][24] The aim of this study was (i) to assess HR-QoL in a large cohort of infants and children with ILD using validated questionnaires; (ii) to identify the clinical factors that were associated with lower HR-QoL scores and (iii) to compare the child and his parents' QoL scores.…”

“…It is also a key feature to estimate the clinical, socio‐familial, and psychological impacts of the disease . Generic QoL using validated questionnaires is a necessary step to assess a specific pediatric population's HR‐QoL and to provide insights to create or improve a chILD specific QoL questionnaire such as the one recently proposed by the German group . This strategy has already been used to validate specific pediatric QoL questionnaires for other chronic lung diseases such as cystic fibrosis and asthma …”

Pediatric Pulmonology Year in Review 2018: Rare lung disease, neuromuscular disease, and diagnostic testing

“…29 While early investigations focused on the etiologies, phenotypes, and natural courses of specific disease entities, chILD researchers have recognized the need to identify meaningful outcome measures to move toward interventional trials. 30 To that end, Niemitz et al 31 developed a questionnaire to assess patient-and parent-reported quality of life for chILD. Items were developed from focus groups with affected children and parents.…”