Publication details

Monitoring of ECFS quality standards for the clinical management of adults with cystic fibrosis

Authors

GRAMEGNA Andrea ALIBERTI Stefano AMORIM Adelina BLASI Francesco BOURKE Stephen BURGEL Pierre-Regis DIAMANTEA Filia DURIEU Isabelle FILA Libor MARIA Giron Moreno Rosa MESSORE Barbara POKOJOVÁ Eva TACCETTI Giovanni VERHULST Stijn DUGAC Andrea Vukic WEGE Sabine DUFF Alistair SOUTHERN Kevin W CASTELLANI Carlo

Year of publication 2024
Type Article in Periodical
Magazine / Source Journal of Cystic Fibrosis
MU Faculty or unit

Faculty of Medicine

Citation
Web https://www.sciencedirect.com/science/article/pii/S1569199323016727?via%3Dihub
Doi http://dx.doi.org/10.1016/j.jcf.2023.11.001
Keywords Cystic fibrosis; Adulthood; Quality standards; Standards of care; Cystic fibrosis centers
Description Background: Although cystic fibrosis (CF) standards of care have been produced and regularly updated, they are not specifically targeting at the adult population. The ECFS Standards of Care Project established an international task force of experts to identify quality standards for adults with CF and assess their adherence. Methods: This study was composed of two phases. In the first one, a task force of international experts derived from published guidelines and graded ten quality standards for adult CF care using a modified Delphi methodology. In the second phase, an international audit was conducted among adult CF centers to retrospectively validate the quality statements and monitor adherence. Results: The task force identified 10 quality standards specific to the care of adults with CF, mainly based on the 2018 ECFS standards of care. 14 adult CF centers participated in the audit, which showed that most quality standards for the management of CF in adults are met across Europe. Heterogeneity in adherence to standards was found across centers according to geographical setting and centers' characteristics . Conclusions: The identification of quality standards is a valuable resource for the standardization and monitoring of care delivery across centers taking care of adults with CF.

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