Περίληψη:
The global burden of children and young people (CYP) with bronchiectasis
is being recognised increasingly. They experience a poor quality of life
and recurrent respiratory exacerbations requiring additional treatment,
including hospitalisation. However, there are no published data on
patient-driven clinical needs and/or research priorities for paediatric
bronchiectasis.
Parent/patient-driven views are required to understand the clinical
needs and research priorities to inform changes that benefit CYP with
bronchiectasis and reduce their disease burden. The European Lung
Foundation and the European Respiratory Society Task Force for
paediatric bronchiectasis created an international roadmap of clinical
and research priorities to guide, and as an extension of, the clinical
practice guideline.
This roadmap was based on two global web-based surveys. The first survey
(10 languages) was completed by 225 respondents (parents of CYP with
bronchiectasis and adults with bronchiectasis diagnosed in childhood)
from 21 countries. The parent/patient survey encompassed both clinical
and research priorities. The second survey, completed by 258 health
practitioners from 54 countries, was limited to research priorities.
The two highest clinical needs expressed by parents/patients were:
having an action management plan for flare-ups/exacerbations and access
to physiotherapists. The two highest health practitioners' research
priorities related to eradication of airway pathogens and optimal airway
clearance techniques. Based on both surveys, the top 10 research
priorities were derived, and unanimous consensus statements were
formulated from these priorities.
This document addresses parents'/patients' clinical and research
priorities from both the parents'/patients' and clinicians' perspectives
and will help guide research and clinical efforts to improve the lives
of people with bronchiectasis.
Συγγραφείς:
Chang, Anne B.
Boyd, Jeanette
Bell, Leanne
Goyal, Vikas and
Masters, I. Brent
Powell, Zena
Wilson, Christine and
Zacharasiewicz, Angela
Alexopoulou, Efthymia
Bush, Andrew and
Chalmers, James D.
Fortescue, Rebecca
Hill, Adam T.
Karadag,
Bulent
Midulla, Fabio
McCallum, Gabrielle B.
Snijders,
Deborah
Song, Woo-Jung
Tonia, Thomy
Grimwood, Keith and
Kantar, Ahmad
