UK Cystic Fibrosis Database

Audit & Research

Audit | Research

Longitudinal information is gathered for each patient and this can be used to track the progress of each patient for key outcomes such as growth and lung function, treatment, bacteriology, complications etc. In addition, the Database model facilitates the twin objectives of audit and research.

Audit

• Clinic Audit: Several reports to audit the clinic are available at the click of a button.These include:

Biographical audits:
Age profile
Age at Diagnosis
Presenting Features
Genotype

Clinic Visit audits:
Body Mass Index
Height
Weight
FEV1
FVC
Exercise Tolerance
Bacterial Lung Infection
Hospital Admission
DNase

Annual Review audits:
Occupation
Nebulised Antibiotics
Organisms Cultured
Supplemental Feeding
Days off School/Work
Days in Hospital
Number of Clinic Visits p.a.
Shwachman Scores
Complications – Chest, Gut etc
Northern Score
Oral Antibiotics
Glucose tolerance

 

• Comparison of local versus national audit reports: This is possible as comprehensive national reports are produced. These are forwarded to Centre Directors along with a copy of their clinic audit report on an annual basis to facilitate comparison. Several Centres use these to assess the performance of their clinics and identify their strengths and weaknesses.
• Centre comparisons: While keeping the identity of individual Centres anonymous, these reports compare Centres for the following key variables:

1. Children under 16
1.1 Percentage of children <10th weight centile, by Centre
1.2 Percentage of children <10th height centile, by Centre

2. Adults 16 years and over
2.1 Percentage of adults <10th weight centile, by Centre
2.2 Percentage of adults <10th height centile, by Centre

3. Patients under 40% predicted FEV1
3.1 Percentage of children with FEV1% < 40
3.2 Percentage of adults with FEV1% < 40

4. Patients under 40% predicted FVC
4.1 Percentage of children with FVC% < 40
4.2 Percentage of adults with FVC% < 40

• Constructing severity scores and ‘banding’ into cost categories in order to help with funding and resource planning to provide optimum care for CF patients.
• Providing anticipated numbers of emerging adults in order to help with siting new CF Centres and provide adequate staffing to cope with excessive patient loads.
• Assisting with the accrediting of CF Centres.
  

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Research

With over 80% of known outcomes that are linked to survival in CF collected by the Database, 95% of UK patients registered and all Regional CF Centres participating in the project, the UK CF Database is well placed to provide data for research into cystic fibrosis. There is a simple procedure for researchers wishing to conduct such research by applying to the Steering Committee for information.

The Database has already provided insight into complications of CF that would be very dificult to achieve by any other means. Particular examples include the selectively worse outcomes for females who develop CF related diabetes, factors related to fertility and the monitoring of drug doses as specified by the Committee on Safety of Medicines. At the social end of the CF spectrum, the UK CF Database has already proved its utility in informing the Government about the potential benefits from genetic screening for CF at birth and the data therein formed part of the submission for the Scottish Neonatal Screening Programme in 2003. The data were utilised to make the case for screening all infants at birth. For a comprehensive list of research output, please see the Publications section.

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