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Development and validation of a parent-proxy bronchiectasis child quality-of-life instrument: the BC-QoL
Jack M Roberts1,2, Peter A Newcombe3, Vikas Goyal1,4
1Australian Centre for Health Services Innovation, Centre for Healthcare Transformation, Queensland University of Technology, Brisbane, Australia.
Insights
A new 23-item tool, the Bronchiectasis Child-Specific Parent-Proxy Quality of Life (BC-QoL) instrument, has been developed and validated. This reliable and valid measure assesses the quality of life for children with bronchiectasis.
Area of Science:
- Pediatric Pulmonology
- Health Outcomes Research
- Psychometrics
Background:
- Quality of life (QoL) is a critical outcome for children with bronchiectasis and their families.
- Existing instruments do not specifically measure QoL related to pediatric bronchiectasis.
- There is a need for a validated, child-specific, parent-proxy QoL measure for this population.
Purpose of the Study:
- To develop and validate a new parent-proxy instrument to measure QoL in children with bronchiectasis (BC-QoL).
- To establish the reliability, validity, and responsiveness of the developed BC-QoL instrument.
Main Methods:
- A prospective cohort study involving 142 parents who completed the draft 44-item BC-QoL and other validated measures.
- Psychometric and clinical impact analyses were used to refine the instrument and assess its properties.
- Data were collected over 3 weeks during different illness phases (stable, exacerbation, recovery).
Main Results:
- The final 23-item BC-QoL demonstrated high reliability (Cronbach's alpha=0.97, split-half=0.95) and repeatability (ICC=0.74).
- The instrument showed good validity, with significant correlations to the Pediatric Quality of Life Inventory (PedsQL™ 4.0).
- The minimal important difference (MID) for BC-QoL ranged from 0.74 to 1.32.
Conclusions:
- The BC-QoL is a valid and reliable instrument for assessing QoL in children with bronchiectasis.
- The BC-QoL can be utilized to evaluate intervention impacts and understand the disease burden.
- This tool supports improved clinical decision-making and research in pediatric bronchiectasis.
Background:
Quality of life (QoL), the highest prioritised outcome by children with bronchiectasis and their parents, is a patient-reported outcome measure increasingly considered essential when evaluating health and interventions. Despite this, there are no validated instruments that specifically measure QoL related to bronchiectasis in children. We aimed to develop and validate a new bronchiectasis child-specific parent-proxy QoL instrument (BC-QoL).
Methods:
We developed a draft 44-item BC-QoL and subsequently conducted a prospective cohort study in which 142 parents completed the draft BC-QoL and six other measures (two validated cough scores; the Parent-proxy Children's Acute Cough-specific QoL questionnaire; the Depression, Anxiety and Stress Scale - 21-items; the RAND-36; and the Pediatric Quality of Life Inventory (PedsQL™ 4.0)) to assess the convergent and discriminant validity of the BC-QoL. The questionnaires were completed over 3 weeks at different phases of a child's illness (stable state, exacerbation and/or recovery). Responses were analysed using psychometric and clinical impact techniques to reduce the number of items and determine the instrument's reliability and validity. The minimal important difference (MID) was also calculated.
Results:
The final 23-item BC-QoL instrument with its three domains (emotional, physical and social well-being) demonstrated high split-half reliability (0.95), Cronbach's alpha (0.97), repeatability (intraclass coefficient 0.74, 95% CI 0.62-0.82), validity and responsiveness. BC-QoL's domains significantly correlated with those of the PedsQL™ 4.0 (Spearman correlations: emotional=0.43, social=0.41, physical=0.47). BC-QoL's MID ranged from 0.74 to 1.32.
Conclusion:
This study provides evidence supporting the validity and reliability of BC-QoL. The BC-QoL can be used to evaluate the impact and effectiveness of interventions and better understand the disease burden among children with bronchiectasis.
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