Quality standards for managing children and adolescents with bronchiectasis: an international consensus

Abstract

The global burden of bronchiectasis in children and adolescents is being recognised increasingly. However, marked inequity exists between, and within, settings and countries for resources and standards of care afforded to children and adolescents with bronchiectasis compared with those with other chronic lung diseases. The European Respiratory Society (ERS) clinical practice guideline for the management of bronchiectasis in children and adolescents was published recently. Here we present an international consensus of quality standards of care for children and adolescents with bronchiectasis based upon this guideline.The panel used a standardised approach that included a Delphi process with 201 respondents from the parents and patients’ survey, and 299 physicians (across 54 countries) who care for children and adolescents with bronchiectasis.The seven quality standards of care statements developed by the panel address the current absence of quality standards for clinical care related to paediatric bronchiectasis. These internationally derived, clinician-, parent- and patient-informed, consensus-based quality standards statements can be used by parents and patients to access and advocate for quality care for their children and themselves, respectively. They can also be used by healthcare professionals to advocate for their patients, and by health services as a monitoring tool, to help optimise health outcomes.

Pediatric Bronchiectasis: Priorities, Precision Medicine, and Transition to Adult Care

“…From this growing interest, one of the most significant developments of recent times has been the establishment of international registries and collaborations, including the Children’s Bronchiectasis Education Advocacy and Research Network ( 3 ). Such collaborations have led to the development of pediatric-specific international management guidelines ( 4 ), consensus-based quality standards for management ( 5 ), definitions of exacerbations, a consumer-focused core outcome set, and other measures ( 5 , 6 ). These international evidence-based statements are expected to improve research through using these patient and/or parent-oriented outputs.…”

World Bronchiectasis Day: It is time for global action to promote equity of care

“…Members include representatives from Australia, Europe, Asia, Africa, and South America, along with the ELF and a parent advisory group. With a focus on patient‐centered needs, to date it has: Established an international collaboration of consumers, scientists, and clinicians with expertise in pediatric bronchiectasis; Developed an international consensus of quality standards for managing children and adolescents with bronchiectasis, 13 based upon the ERS clinical practice guideline for child and adolescent bronchiectasis 7 ; Derived a statement for defining respiratory exacerbations in children and adolescents with bronchiectasis for clinical trials 14 ; Consolidated a road map of priorities based upon the needs of patients/parents of children and adolescents with bronchiectasis 15 ; Launched an international pediatric bronchiectasis registry; Obtained international consensus on the clinical and research priorities 15 ; Developed a core‐outcome‐set for intervention studies (manuscript in review); and Contributed to resources for education and advocacy (see website).…”

“…For example, in our international survey, the two highest clinical needs expressed by parents/patients were having an action management plan for exacerbations and access to physiotherapists, while the two highest health practitioners' research priorities related to eradication of airway pathogens and optimal airway clearance techniques. 15 We thank the many parents/patients and international community of health professionals who completed the surveys that informed four of the documents [13][14][15] above.…”

“…• Developed an international consensus of quality standards for managing children and adolescents with bronchiectasis, 13 based upon the ERS clinical practice guideline for child and adolescent bronchiectasis 7 ;…”