Quality of care in cystic fibrosis: assessment protocol of the French QIP PHARE-M

Autor: Gilles Rault, Emmanuel Nowak, Clémence Dehillotte, Lydie Lemmonier, Dominique Pougheon Bertrand
Přispěvatelé: Laboratoire Educations et Pratiques de Santé (LEPS), Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Sorbonne Paris Cité (USPC)-Université Paris 13 (UP13), CIC Brest, Université de Brest (UBO)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Hôpital de la Cavale Blanche, Centre de Ressources et de Compétences de la Mucoviscidose [Roscoff] (CRCM), Société française de la mucoviscidose
Rok vydání: 2018
Předmět:
Male
medicine.medical_specialty
Quality management
[SDV]Life Sciences [q-bio]
Psychological intervention
lcsh:Medicine
Cystic fibrosis
03 medical and health sciences
0302 clinical medicine
Forced Expiratory Volume
Intervention (counseling)
Health care
Humans
Medicine
Pharmacology (medical)
Registries
030212 general & internal medicine
ComputingMilieux_MISCELLANEOUS
Genetics (clinical)
Quality of Health Care
Protocol (science)
business.industry
Research
030503 health policy & services
lcsh:R
General Medicine
medicine.disease
Quality Improvement
Health indicator
Quality improvement program
3. Good health
Family medicine
Female
Patient registry
France
Qualitative study
Quantitative study
0305 other medical science
business
[SDV.MHEP]Life Sciences [q-bio]/Human health and pathology
Qualitative research
Zdroj: Orphanet Journal of Rare Diseases, Vol 13, Iss S1, Pp 55-69 (2018)
Orphanet Journal of Rare Diseases
Orphanet Journal of Rare Diseases, BioMed Central, 2018, 13 (S1), ⟨10.1186/s13023-017-0749-3⟩
ISSN: 1750-1172
DOI: 10.1186/s13023-017-0749-3
Popis: Background 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 2011 and 2013. The pilot phase assessments attested the progressive adherence of the teams and improvements in care management. The PHARE-M Performance research project aims at assessing in 2015 the impact of the PHARE-M program on patient health indicators at trained versus untrained centers. It also sought to identify contextual factors that could account for variability in the performance of the PHARE-M among the trained centers. Methods A mixed methodology combining:a quantitative experimental study: a comparison, using a mixed model for repeated data (from 2011 to 2015), of the average changes over time in forced expiratory volume in 1 s (FEV1) and body mass index (BMI) between two groups of patients included in a closed cohort (non-transplant patients, continuous follow-up at one participating CFC, and a CF-causing mutation), one having benefitted from the PHARE-M program and the other not having done so, anda realistic study: a characterization of the impact on care management and an identification of mechanisms through which the PHARE-M intervention improved the team’s effectiveness in different CFC contexts; this required modeling the intervention, context, and impact on care management with respect to the criteria of the chronic care model (CCM); this was done using a self-administered questionnaire given to professionals and patients/parents supplemented with focus groups. Conclusion Although the study population was controlled, it may be difficult to establish a causal relationship between the differences in the changes over time in patient health indicators in the two groups of patients and the PHARE-M intervention as it is often the case in complex interventions rolled out in adaptive environments. The analysis of factors associated with variations in the impact of the PHARE-M at the different trained CFCs required the adoption of instruments validated in other contexts; these could be useful for assessing the performance of other interventions in healthcare practices at CFCs in France.
Databáze: OpenAIRE
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