Chang Anne B, Boyd Jeanette, Bush Andrew, Hill Adam T, Powell Zena, Zacharasiewicz Angela, Alexopoulou Efthymia, Chalmers James D, Collaro Andrew J, Constant Carolina, Douros Konstantinos, Fortescue Rebecca, Griese Matthias, Grigg Jonathan, Hector Andreas, Karadag Bulent, Mazulov Oleksandr, Midulla Fabio, Moeller Alexander, Proesmans Marijke, Wilson Christine, Yerkovich Stephanie T, Kantar Ahmad, Grimwood Keith
Australian Centre for Health Services Innovation, Queensland University of Technology, Brisbane, Australia.
Department of Respiratory and Sleep Medicine, Queensland Children's Hospital, Brisbane, Australia.
Breathe (Sheff). 2022 Sep;18(3):220144. doi: 10.1183/20734735.0144-2022. Epub 2022 Nov 15.
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.
儿童和青少年支气管扩张的全球负担正日益受到关注。然而，与患有其他慢性肺病的儿童和青少年相比，在不同地区和国家之间以及地区和国家内部，为患有支气管扩张的儿童和青少年提供的资源和护理标准存在显著的不公平现象。欧洲呼吸学会（ERS）最近发布了关于儿童和青少年支气管扩张管理的临床实践指南。在此，我们基于该指南提出关于儿童和青少年支气管扩张护理质量标准的国际共识。该小组采用了一种标准化方法，其中包括德尔菲法，有来自家长和患者调查的201名受访者，以及299名（来自54个国家）照顾患有支气管扩张的儿童和青少年的医生参与。该小组制定的七项护理质量标准声明解决了目前儿科支气管扩张临床护理质量标准缺失的问题。这些源自国际、由临床医生、家长和患者提供信息、基于共识的质量标准声明，家长和患者可分别用于为其子女和自身获取并倡导优质护理。医疗保健专业人员也可利用这些声明为其患者发声，卫生服务机构则可将其作为监测工具，以帮助优化健康结果。
