Trans-Atlantic collaboration: Applying lessons learned from the US CF Foundation quality improvement initiative

Kathryn A. Sabadosa, Marjorie M. Godfrey, Bruce Marshall

Research output: Contribution to journalArticle

Abstract

Background: Between 2002 and 2006 France launched a national cystic fibrois (CF) newborn screening program; organized a network of specialized CF care centers; and issued CF diagnostic and treatment standards. To continue to build on this success in 2007 the Cystic Fibrosis Center of Expertise for Rare Diseases (CF CERD) of Nantes-Roscoff in partnership with the French CF Society, the French CF Association (Vaincre la Mucoviscidose), and all CF center leaders from across the country agreed to pursue center-level improvement in medical outcomes for people with CF by adapting the U.S. Cystic Fibrosis Foundation's (US CFF) national initiative, Accelerating the Rate of Improvement in CF Care. To launch the Program to Improve Results and Expertise in CF (le Programme d'Amélioration des Résultats et de l'Expertise en Mucoviscidose - PHARE-M), French leaders pursued mentorship and guidance from leaders at the US CFF, the Dartmouth Institute (TDI), and clinical care teams at CF centers across the U.S. Methods: The following activities enabled the Nantes-Roscoff CF CERD team members and a parent, involved with the French CF Association board and a quality engineer by training, to gain the leadership and quality improvement knowledge and skills necessary to implement the PHARE-M program: 1) regularly attending national meetings, tracking publications, and leveraging existing partnerships; 2) completing two sabbaticals to visit U.S. CF centers and enrolling in academic and professional training courses; and, 3) inviting US CFF and TDI leaders to France to meet key opinion leaders and frontline teams. Conclusions: The Nantes-Roscoff CF CERD team successfully adapted the US CFF's initiative to accelerate improvement in CF care by establishing a partnership with U.S. leaders to communicate and exchange strategies and lessons learned; intentionally studying and adapting the Clinical Microsystems approach to quality improvement; and learning directly from the experience of frontline teams in the U.S. They continue to partner with U.S. leaders and are seeking to collaborate with European colleagues to continue to improve care for individuals with CF and their families across Europe.

Original languageEnglish (US)
Article number13
JournalOrphanet Journal of Rare Diseases
Volume13
DOIs
StatePublished - Feb 8 2018
Externally publishedYes

Fingerprint

Quality Improvement
Cystic Fibrosis
France
Mentors
Rare Diseases
Publications
Teaching
Learning
Newborn Infant
Therapeutics

Keywords

  • Clinical microsystem
  • Cystic fibrosis
  • Quality improvement program of care

ASJC Scopus subject areas

  • Genetics(clinical)
  • Pharmacology (medical)

Cite this

Trans-Atlantic collaboration : Applying lessons learned from the US CF Foundation quality improvement initiative. / Sabadosa, Kathryn A.; Godfrey, Marjorie M.; Marshall, Bruce.

In: Orphanet Journal of Rare Diseases, Vol. 13, 13, 08.02.2018.

Research output: Contribution to journalArticle

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abstract = "Background: Between 2002 and 2006 France launched a national cystic fibrois (CF) newborn screening program; organized a network of specialized CF care centers; and issued CF diagnostic and treatment standards. To continue to build on this success in 2007 the Cystic Fibrosis Center of Expertise for Rare Diseases (CF CERD) of Nantes-Roscoff in partnership with the French CF Society, the French CF Association (Vaincre la Mucoviscidose), and all CF center leaders from across the country agreed to pursue center-level improvement in medical outcomes for people with CF by adapting the U.S. Cystic Fibrosis Foundation's (US CFF) national initiative, Accelerating the Rate of Improvement in CF Care. To launch the Program to Improve Results and Expertise in CF (le Programme d'Am{\'e}lioration des R{\'e}sultats et de l'Expertise en Mucoviscidose - PHARE-M), French leaders pursued mentorship and guidance from leaders at the US CFF, the Dartmouth Institute (TDI), and clinical care teams at CF centers across the U.S. Methods: The following activities enabled the Nantes-Roscoff CF CERD team members and a parent, involved with the French CF Association board and a quality engineer by training, to gain the leadership and quality improvement knowledge and skills necessary to implement the PHARE-M program: 1) regularly attending national meetings, tracking publications, and leveraging existing partnerships; 2) completing two sabbaticals to visit U.S. CF centers and enrolling in academic and professional training courses; and, 3) inviting US CFF and TDI leaders to France to meet key opinion leaders and frontline teams. Conclusions: The Nantes-Roscoff CF CERD team successfully adapted the US CFF's initiative to accelerate improvement in CF care by establishing a partnership with U.S. leaders to communicate and exchange strategies and lessons learned; intentionally studying and adapting the Clinical Microsystems approach to quality improvement; and learning directly from the experience of frontline teams in the U.S. They continue to partner with U.S. leaders and are seeking to collaborate with European colleagues to continue to improve care for individuals with CF and their families across Europe.",
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