Edited by Gilles Rault and Pierre Lombrail.
Volume 13 Supplement 1
PHARE-M: Quality Improvement Program for Cystic Fibrosis Care in France
Research
The publication of this supplement was supported by the French Ministry of Health to the research project PREPS 12008099 (Decision PRePS Call for Project December 5th 2012) including the related publications. Funds were allocated to the Ildys Foundation, promotor of the project. The articles have undergone the journal's standard peer review process for supplements. GR was responsible for the PHARE-M training program and the PHARE-M Performance Research Study. PL declares that they have no competing interests.
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Citation: Orphanet Journal of Rare Diseases 2018 13(Suppl 1):26
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Trans-Atlantic collaboration: applying lessons learned from the US CF Foundation quality improvement initiative
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...
Citation: Orphanet Journal of Rare Diseases 2018 13(Suppl 1):13 -
Introduction of a collaborative quality improvement program in the French cystic fibrosis network: the PHARE-M initiative
An agreement, signed in 2007 by the 49 French Cystic Fibrosis Centers, included a commitment to participate, within the next 5 years, in a care quality assessment and improvement program (QIP). The objective w...
Citation: Orphanet Journal of Rare Diseases 2018 13(Suppl 1):12 -
A quality improvement program to improve nutritional status of children with Cystic Fibrosis aged 2-12 years old over a 3 year period at CF center Roscoff, Brittany
The Cystic Fibrosis (CF) center in Roscoff (Brittany) has been involved in therapeutic education programs (TEP) since 2006 and took part in the pilot phase of the French quality improvement program (QIP) since...
Citation: Orphanet Journal of Rare Diseases 2018 13(Suppl 1):8 -
A quality improvement program for adolescents with cystic fibrosis: focus on psychosocial skills
The two pediatric cystic fibrosis centers (CFCs) in Paris (Robert Debré) and Nantes, France, have been developing therapeutic patient education (TPE) programs since 2006 and have been engaged in the pilot phas...
Citation: Orphanet Journal of Rare Diseases 2018 13(Suppl 1):7 -
A quality improvement program to reduce the time on the lung transplant waiting list at the Nantes University Hospital
In 2010, the time on the lung transplant waiting list in Nantes University Hospital (NUH) was 9.2 months, compared to a French national median of about 4 months. The NUH transplant unit performs both heart and...
Citation: Orphanet Journal of Rare Diseases 2018 13(Suppl 1):11 -
Quality of care in cystic fibrosis: assessment protocol of the French QIP PHARE-M
The PHARE-M care quality improvement program, modeled on the US Cystic Fibrosis Quality Improvement Program, was introduced at 14 cystic fibrosis centers (CFCs) in the French Cystic Fibrosis Network between 20...
Citation: Orphanet Journal of Rare Diseases 2018 13(Suppl 1):10 -
Lessons from the on-site quality audit of data transmitted to the French cystic fibrosis registry
The French Cystic Fibrosis Registry takes a census of the population of patients and records their annual data transmitted by Cystic Fibrosis Centers (CFCs). Quality of patient data has been a focus in the pas...
Citation: Orphanet Journal of Rare Diseases 2018 13(Suppl 1):9 -
Lessons from patient and parent involvement (P&PI) in a quality improvement program in cystic fibrosis care in France
Quality Improvement Programs (QIP) in cystic fibrosis (CF) care have emerged as strategies to reduce variability of care and of patient outcomes among centres facilitating the implementation of Best Practices ...
Citation: Orphanet Journal of Rare Diseases 2018 13(Suppl 1):19
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- ISSN: 1750-1172 (electronic)