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A core outcome set for bronchiectasis in children and adolescents for use in clinical research: an international
Anne B Chang1, Jeanette Boyd2, Andrew Bush3
1Australian Centre for Health Services Innovation, Queensland University of Technology, Brisbane, QLD, Australia; Department of Respiratory and Sleep Medicine, Queensland Children's Hospital, Brisbane, QLD, Australia; NHMRC Centre for Research Excellence in Paediatric Bronchiectasis (AusBREATHE), Child Health Division, Menzies School of Health Research, Charles Darwin University, Darwin, NT, Australia.
Insights
Developing a core outcome set (COS) for pediatric non-cystic fibrosis bronchiectasis ensures consistent, patient-centered research. This standardized approach will improve clinical care and outcomes for children with this condition.
Area of Science:
- Pediatric Pulmonology
- Clinical Research Methodology
- Patient-Reported Outcomes
Background:
- Non-cystic fibrosis bronchiectasis in children requires standardized research outcomes.
- Existing research lacks agreement on meaningful health outcomes for pediatric patients and caregivers.
- Patient and parent perspectives are crucial for developing relevant research objectives.
Purpose of the Study:
- To establish an international, multidisciplinary core outcome set (COS) for pediatric non-cystic fibrosis bronchiectasis.
- To incorporate patient and parent perspectives into the development of essential research outcomes.
- To facilitate consistent, patient-focused research and evidence-based guidelines.
Main Methods:
- Systematic review to identify potential outcomes.
- Development of surveys for parents, patients, and healthcare professionals.
- International consensus meetings to finalize the core outcome set.
Main Results:
- A ten-item core outcome set (COS) was developed.
- Five essential outcomes were identified: quality of life, symptoms, exacerbation frequency, non-scheduled healthcare visits, and hospitalizations.
- 562 participants from 17 countries (parents/patients) and 58 countries (healthcare professionals) contributed.
Conclusions:
- The consensus-based COS ensures consistent, patient-focused outcomes in pediatric bronchiectasis research.
- Implementation of this COS will facilitate global research and the development of improved clinical guidelines.
- Further research is needed to develop validated measurement instruments for the COS outcomes.
Abstract:
Improving the treatment of non-cystic fibrosis bronchiectasis in children and adolescents requires high-quality research with outcomes that meet study objectives and are meaningful for patients and their parents and caregivers. In the absence of systematic reviews or agreement on the health outcomes that should be measured in paediatric bronchiectasis, we established an international, multidisciplinary panel of experts to develop a core outcome set (COS) that incorporates patient and parent perspectives. We undertook a systematic review from which a list of 21 outcomes was constructed; these outcomes were used to inform the development of separate surveys for ranking by parents and patients and by health-care professionals. 562 participants (201 parents and patients from 17 countries, 361 health-care professionals from 58 countries) completed the surveys. Following two consensus meetings, agreement was reached on a ten-item COS with five outcomes that were deemed to be essential: quality of life, symptoms, exacerbation frequency, non-scheduled health-care visits, and hospitalisations. Use of this international consensus-based COS will ensure that studies have consistent, patient-focused outcomes, facilitating research worldwide and, in turn, the development of evidence-based guidelines for improved clinical care and outcomes. Further research is needed to develop validated, accessible measurement instruments for several of the outcomes in this COS.
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