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New General Practice Contract: Opportunities for Cancer Registration UKACR, September 2004 Dr Anna Gavin Tel: 028 9063 2573 Fax: 028 9024 8017 E.Mail: nicr@qub.ac.uk Website: www.qub.ac.uk/nicr. ACKNOWLEDGEMENTS:. Miss Wendy Hamill, Office Manager
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New General Practice Contract: Opportunities for Cancer Registration UKACR, September 2004 Dr Anna Gavin Tel: 028 9063 2573 Fax: 028 9024 8017 E.Mail: nicr@qub.ac.uk Website: www.qub.ac.uk/nicr
ACKNOWLEDGEMENTS: • Miss Wendy Hamill, Office Manager • Mrs Susan McGookin, Secretary • Mrs Helen Hanlon, TVO • Mrs Pat Donnelly, TVO • Mrs Kate Donnelly, TVO • Mrs Rosemary Ward, TVO
2004 GP contract requires GPs to hold register of patients with chronic conditions including CANCER
NEW GENERAL MEDICAL SERVICES CONTRACT QUALITY & OUTCOME FRAMEWORK - Chronic Disease Management Allowances “While it is recognised that these may not be 100% accurate it is the responsibility of the practice to demonstrate that it has systems in place to maintain a high quality register”
REGISTERS • Chronic Obstructive Pulmonary Disease • Epilepsy • Hypothyroidism • Cancer • Mental Health • Asthma • Coronary Heart Disease • Stroke or TIA • Hypertension • Diabetes Mellitus Cancer Points 12/581 = 2%
METHOD • Write to GPs enquiring whether they wish help to compose/compare cancer registry • Duplicate lists sent with invitation to return one with updates and list of Prostate patients
N. IRELAND GPs - 1080 Practices - 367 Tumours - 67,028 (inc. 17,563 NMS) (8,500 per year) (1993-current) Response Rate to Invitation Letter - 99% • Feedback of amended lists by 1 Month - 47% Reminder letter sent August 2004
RESPONSES BY AUGUST 2004 • 208/367 Practices = 57% • 29,200 tumours • Changes, e.g. address 95% - 198 Practices • 10 practices – no change
DATA CHANGES • Address Update - 12-18%- lowest in rural areas • Diagnostic Address vs Current Address Death Status Update - 7-10% • Changed GP - 3% • Name Change 2% • 3 sets patients identified incorrectly categorised by NICR as one e.g. father/son
TUMOUR CHANGES • 106 patients = 0.36% of those making changes to data. (approx 3% of those with tumour data changes • GP information incorrect 33 cases • Changes, NICR aware already of 11 cases • NICR wrong 40 cases (20 hosp case note only) • Changes to pre 1993 data = 23 cases • New patients pre 1993 / 2003 / 2004 = 57 cases
NICR ERRORS EXAMPLESn=40 cases = 0.14% of those making returns with comments NICR GP • Renal Cell Cancer - Necrotic Kidney • Malignant Ovary - Ischaemic Bowel • Malignant Lymphoma - Hyperplasia • Colon Cancer - Not Malignant • Melanoma - Borderline • Urinary Tract - Not Malignant
NON MALIGNANCIES Multiple Myeloma SLE Ovary x2 Lung TB Cervix ruled out at hysterectomy 20 Bone Prostate x 4
EXAMPLE OF MORE REFINED/CHANGED DIAGNOSIS • Lymphnode Ca Caecum Ca Breast • Site of skin tumours • Laterality for some tumours • Testis Seminoma • Skin Malignant Melanoma • Bladder unspecified Transitional Cell Ca • Information on metastases • Skin Pagets Nipple
NEW CANCERS 60 CASES 2003+ - 33% Pre 1993 - 21% Prostate - 15% Some General Practices provided copies of existing registries
USEFUL ADMINISTRATIVE DATA • Death Abroad/Moved Abroad • Address Update • Changes of GP • Transfers Out • Deaths • Duplicate Patients
ESTIMATED COSTS • Administrative Time - £5,000 • Paper, Envelopes etc. - £200 • Postage met by CSA • Analysis - £1,000 CONFIDENCE IN NICR DATA - PRICELESS
FEEDBACK FROM GPS • “First offer of help re new contract” • “Interesting project - still quite a bit of work to do” • “Project involved significant amount of time and effort” • “Delighted with help” • Detailed letters re diagnostic differences • “Requested regular updates”
BENEFITS OF EXERCISE • Independent validation of database • Update on recent deaths • Update on recent Address change • Update Name changes • Profile of Cancer Registry raised with GPs • Credibility of Cancer Registry established with GPs