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Published on: June 16, 2020
Health-related quality of life in childhood interstitial lung disease
Matthias Griese1, Mandy Niemitz2, Katrin Erlewein2
1Department of Pediatrics, Dr von Hauner Children's Hospital, University Hospital, LMU Munich, German Center for Lung Research (DZL), Munich, Germany Matthias.Griese@med.uni-muenchen.de.
Insights
Childhood interstitial lung disease (chILD) significantly impacts health-related quality of life (HrQoL). Prior inpatient care and failure to thrive were key factors reducing HrQoL in chILD patients.
Area of Science:
- Pediatric Pulmonology
- Rare Diseases
- Quality of Life Research
Background:
- Childhood interstitial lung diseases (chILD) are rare, chronic respiratory conditions with limited treatment options.
- Health-related quality of life (HrQoL) assessment is crucial for monitoring chILD patient well-being.
- Understanding factors affecting HrQoL is vital for comprehensive chILD care.
Purpose of the Study:
- To identify medical and socio-demographic factors influencing HrQoL in children with chILD.
- To analyze the relationship between clinical features and HrQoL scores in a large chILD cohort.
- To provide data for improving clinical management and patient support in chILD.
Main Methods:
- Utilized prospectively collected data from the chILD EU Register.
- Administered validated, age-specific HrQoL questionnaires (chILD-specific and PedsQL™ 4.0).
- Employed univariate analyses and multivariable ordinary least squares (OLS) regression to assess associations.
Main Results:
- Analysis included 424 patients from 10 European countries.
- Inpatient medical care within 3 months and failure to thrive were significantly associated with lower HrQoL scores.
- Pulmonary function test results showed only a weak correlation with HrQoL scores.
Conclusions:
- Prior inpatient treatment and failure to thrive are major determinants of reduced HrQoL in chILD.
- Interventional studies are needed to explore if addressing these factors can improve chILD patient outcomes.
- Findings highlight the importance of considering patient history and growth in managing chILD.
Background:
Childhood interstitial lung diseases (chILD) encompass a diverse group of rare, chronic respiratory disorders. While treatment options are limited, evaluating health-related quality of life (HRQoL) has become a vital approach for clinical monitoring. This study aims to enhance our understanding of the medical and sociodemographic factors influencing HRQoL in chILD.
Methods:
This study used prospectively obtained data from the chILD-EU Register. Caregivers were handed validated, age-specific HRQoL questionnaires (the chILD-specific questionnaire and the generic Pediatric Quality of Life Questionnaire (PedsQL) 4.0 questionnaire). The scores were linearly transformed from a 5-point scale to a percentage scale ranging from 0% to 100%. We used exploratory univariate analyses and multivariable ordinary least squares (OLS) regression models on cross-sectional data to investigate the associations between subjects' clinical features and HRQoL scores.
Results:
424 patients from 10 European countries and 48 study sites were included in the final analysis. The most relevant factors associated with lower HRQoL scores for the chILD-specific questionnaire and the PedsQL 4.0 Total Score, as identified in the univariate analysis and confirmed in the multivariable OLS regression model, were "inpatient medical care in the last 3 months" (-13.6%; p<0.0001 and -11.4%; p<0.0001, respectively) and "failure to thrive" (-9.1%; p=0.0014 and -12.1%; p<0.0001, respectively). Among subjects old enough for pulmonary function testing (PFT) (n=162), we observed only a weak correlation between PFT results and different HRQoL scores.
Conclusions:
The main factors linked to reduced HRQoL scores were prior inpatient treatment and failure to thrive. Further interventional studies should determine whether addressing these factors can enhance HRQoL scores and potentially improve quality of life in chILD.
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