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Pediatric Bronchiectasis Quality-of-Life Questionnaire-What Does the Literature Say?
Hollie Smith1, Derek Yates1, Prasad Nagakumar1,2
1Birmingham Women's and Children's NHS Foundation Trust, Birmingham, UK.
Insights
No validated quality of life (QoL) tools exist for pediatric bronchiectasis (PB). Developing a pediatric-specific QoL questionnaire is crucial for improving care and understanding the disease burden in children and adolescents.
Area of Science:
- Pediatric Pulmonology
- Health Outcomes Research
Background:
- Pediatric bronchiectasis (PB) is a chronic lung disease significantly impacting children's quality of life (QoL).
- Health-related quality of life (HRQoL) assessments are vital for managing chronic pediatric diseases.
- Existing QoL tools may not adequately capture the specific burden of PB in young patients.
Purpose of the Study:
- To identify and review existing self-reported questionnaires assessing QoL in pediatric bronchiectasis.
- To determine the availability of validated, pediatric-specific HRQoL instruments for PB.
Main Methods:
- A comprehensive scoping review was conducted following PRISMA guidelines.
- Searches included major databases (PubMed, Embase, etc.) using keywords related to QoL, pediatric bronchiectasis, and patient-reported outcomes.
- Studies published since 2000 assessing QoL in pediatric patients with bronchiectasis were included.
Main Results:
- Fifteen unique HRQoL tools were identified for bronchiectasis or related conditions.
- Only five tools were adapted from adult populations; no dedicated pediatric bronchiectasis QoL questionnaires were found.
- A significant gap exists in validated, pediatric-specific HRQoL assessment tools for PB.
Conclusions:
- There is a critical need for a validated, pediatric-specific health-related quality of life (HRQoL) questionnaire for bronchiectasis.
- Development of such a tool is a priority to better understand disease impact and guide interventions.
- A validated pediatric tool will improve clinical care and research for children and adolescents with PB.
Introduction:
Bronchiectasis in children is a neglected chronic suppurative lung disease that imposes a substantial burden on children and adolescents and their families, adversely affecting quality of life (QoL). Incorporating health-related quality of life (HRQoL) tools into routine care can improve outcomes by highlighting disease burden and guiding tailored interventions. This scoping review aimed to identify self-reported questionnaires assessing QoL in pediatric bronchiectasis (PB).
Methods:
Following the PRISMA extension for scoping reviews, we searched Embase, CINAHL, MEDLINE, Cochrane Central Register of Controlled Trials, PsycINFO, and PubMed for articles published in English since 2000. Pre-specified keywords (QoL, children, adolescents, bronchiectasis, lung disease, patient reported outcome measures (PROM), primary ciliary dyskinesia, cystic fibrosis) and related index terms were used. Studies employing questionnaires or items assessing QoL in children and adolescents with bronchiectasis were included without geographical restrictions. Two authors independently screened and appraised eligible manuscripts.
Results:
The search yielded 731 articles, of which 373 were relevant to respiratory diseases. Thirty-three met inclusion criteria, identifying 15 unique HRQoL tools used in bronchiectasis or related conditions. Only five (33%) of these tools were developed for adults with bronchiectasis and no pediatric-specific bronchiectasis HRQoL questionnaires were identified.
Conclusion:
This scoping review highlights the absence of any validated, pediatric-specific HRQoL tools for bronchiectasis. Developing such a questionnaire, informed by existing instruments and our review findings, is an urgent priority. A validated tool will enhance understanding of disease impact on children, adolescents and their families, supporting tailored clinical care and research interventions.
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