ArticleOrphanet journal of rare diseases2018
Lessons from the on-site quality audit of data transmitted to the French cystic fibrosis registry.
Article in Orphanet journal of rare diseases, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
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Who cites it
7 citing papers in PubMed, 11 citations in OpenAlex.
- Data accuracy in the European Cystic Fibrosis Society Patient Registry: results of an on-site data validation project.Orphanet journal of rare diseases · 2025Article
- Validating the Data Completeness and Accuracy of the Canadian Cystic Fibrosis Registry.Canadian respiratory journal · 2025Article
- Acute respiratory failure due to pulmonary exacerbation in children with cystic fibrosis admitted in a pediatric intensive care unit: outcomes and factors associated with mortality.Respiratory research · 2024Article
- Quality of anthropometric data measured in children and adolescents with cystic fibrosis: a scoping review.Revista paulista de pediatria : orgao oficial da Sociedade de Pediatria de Sao Paulo · 2023Article
- Strategies for care quality improvement in Cystic Fibrosis.Orphanet journal of rare diseases · 2018Article
- Introduction of a collaborative quality improvement program in the French cystic fibrosis network: the PHARE-M initiative.Orphanet journal of rare diseases · 2018Article
- Quality of care in cystic fibrosis: assessment protocol of the French QIP PHARE-M.Orphanet journal of rare diseases · 2018Article
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Authors and funding
4 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe 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 past years, with the implementation of automated controls before data integration. The objective was to assess, at the 14 CFCs trained in the quality improvement named Hospital Program to Improve Outcomes and Expertise in Cystic Fibrosis (PHARE-M), the quality of the 2012 and 2013 data transmitted to the French Registry with respect to the rules established to obtain forced expiratory volume in 1 second (FEV1%) and anthropometric data.
methodsThe clinical researcher selected 20 patients at each CFC from age ranges corresponding to different visit frequencies and measurement procedures in order to reach saturation of error causes. The control consisted in comparing source data, pulmonary function tests (PFTs), patient records, and data in the Registry.
resultsThe audit focused on 242 patients, 2455 consultations and 1855 PFTs. Less than 5% of data concerning weight, height, or FEV1 (L) in the patient records files had discrepancies with source data. Discrepancies on patient height between patient records and PFT files were found in 11% of cases. For one hundred and ten patients (45%), anomalies were found between the patient record and the Registry for the FEV1% and the associated anthropometric measurements mainly related to the interpretation of the selection rule of the venue corresponding to the "best spirometry in the year" and the reference standard used (local standards versus Knudson reference equations). For the 33 children in the age range of 6-17 years old (27% out of 120 children records controlled), the FEV1% value in the Registry presented an average deviation of +4.25% (min. = -9.3%; max. = +16.9%; median = 4%) with the value from the Patient record.
conclusionsThis first on-site quality audit of the data transmitted to the Registry pointed out variability in the measurement process at the CFCs. The rule for selecting the data for the Registry was applied differently at some CFCs, and various local References for the FEV1% calculation were used. Avenues for improvement have been identified.
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