Systemic Anti Cancer Therapy (SACT) Brain/CNS SSCRG

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1 Systemic Anti Cancer Therapy (SACT) Brain/CNS SSCRG Kellie Peters & Ralphael Oghagbon National Disease Registration, CKO

2 What is currently available and how do I gain access? Nationally Coverage Map Numbers in Treatment Top Regimens Area Team Data Completeness Benchmarking Hospital Post Chemo Mortality Data Completeness Top Regimens

3 Coverage Map: A National Perspective 3 SACT dataset - Chemotherapy Intelligence Unit

4 So what do the numbers tell us? Patients Receiving Drug Treatments July 13 to June 14 August 13 to July , ,879 Regimens Commenced 250, ,162 Cycles Commenced 669, ,073 The figures listed above represent the number of patients reported to the CIU through SACT, for whom treatment activity has been submitted for the period covering August 2013 through July 2014 inclusive.

5 How good is the data nationally? SACT data completeness, January 2014 to December 2014 Number of patients England Brain/CNS % NHS Number % Date of Birth % Current gender % Ethnicity % Patient postcode 2, % M 100% M 100% 95% 100% M Key Increase in completeness since comparison period Decrease in completeness since comparison period No change in completeness since comparison period 100% completion (for non-mandatory items) M Mandatory item (always 100%) Number of tumour records 2,749 88% 89% 91% 100% 54% 21% Number of regimens % GP Practice Code % Programme number % GMC Code % Regimen number % Consultant Specialty % Treatment intent % Primary diagnosis % Regimen name % Morphology % Height at start of regimen % Stage of disease at start of programme % Weight at start of regimen % Performance Status at start of regimen 4,594 70% 54% 80% 100% M 70% 63% 40% % Comorbidity adjustment % Date of decision to treat % Start date of regimen % Clinical trial % Chemo radiation % Number of cycles planned Number of cycles 35% 81% 100% M 77% 67% 57% 9, % M 96% 60% 38% 67% 89% Number of drug records % Cycle number % Drug name % Start date of cycle % Actual dose per administration % Weight at start of cycle % Administration route % Performance Status at start of cycle % Administration date % OPCS procurement code % OPCS Delivery code % of Cycles with Drug records % Organisation code of drug provider 16, % 89% 93% 100% 73% 94% Number of outcome records % Date of Final Treatment % Regimen modification (dose reduction) % Regimen modification (time delay) % Regimen modification (stopped early) % Regimen outcome summary % Date of death 3,119 23% 57% 21% 44% 6% 6% 68% of regimens

6 How good is my data, compared to hospitals in my area team?

7 Can I find out how complete my hospital s Brain/CNS data is?

8 Quantifying missing data Understanding what data are not currently being reported through SACT is important for planning CIU data improvement work Key themes: Coverage of diagnostic groups Age groups (Paediatrics, TYA, Adults) Route of Administration (IV / Subcut / Intravesical / Oral) 8 SACT Analysis: Now and the future - CIU Away Day - 4th December

9 Cancer Waiting Times (CWT) data are reported for all English NHS trusts. Carolyn Gildea and Matthew Barclay from EMKIT provided detailed CWT data for all trusts reporting first and second/subsequent treatments for: Chemotherapy Hormone therapy Chemo-radiotherapy Anti-Cancer Drug Regimen (other), or Immunotherapy Coverage of diagnostic groups: Comparing SACT data with Cancer Waits all split by diagnostic group January September SACT Analysis: Now and the future - CIU Away Day - 4 th December

10 Coverage of diagnostic groups: Comparing SACT data with Cancer Waits January September 2014 Complete: 100% (or more) of expected patients matched between CWT & SACT Missing (no data): no data reported in SACT for groups that had been reported in CWT Incomplete: volume of data reported in SACT does not match that reported in CWT 10 SACT Analysis: Now and the future - CIU Away Day - 4 th December

11 Coverage of diagnostic groups: Comparing SACT data with Cancer Waits January September 2014 Seven trusts not submitting any diagnostic groups: (RC3) Ealing Hospital NHS Trust (RWW) Warrington and Halton Hospitals NHS Foundation Trust (RYQ) South London Healthcare NHS Trust (RT3) Royal Brompton & Harefield NHS Foundation Trust (RHA) Nottinghamshire Healthcare NHS Trust (RPC) Queen Victoria Hospital NHS Foundation Trust Issue with trust mergers/splits? Unexpected hospitals delivering chemotherapy? Complete: 100% (or more) of expected patients matched between CWT & SACT Missing (no data): no data reported in SACT for groups that had been reported in CWT Incomplete: volume of data reported in SACT does not match that reported in CWT 11 SACT Analysis: Now and the future - CIU Away Day - 4 th December

12 Brain/CNS Breast Gynae Head and Neck Leukaemia Lower GI Lung Lymphoma Myeloma Other Other haematology Sarcoma Sarcoma/Gynae Skin Upper GI Urology Coverage of diagnostic groups: Comparing SACT data with Cancer Waits Trusts The Christie NHS Foundation Trust The Royal Marsden NHS Foundation Trust Oxford University Hospitals NHS Trust University Hospitals of Leicester NHS Trust Cambridge University Hospitals NHS Foundation Trust University Hospitals of Morecambe Bay NHS Foundation Trust The Clatterbridge Cancer Centre NHS Foundation Trust Derby Hospitals NHS Foundation Trust Guy's and St Thomas' NHS Foundation Trust Northampton General Hospital NHS Trust University College London Hospitals NHS Foundation Trust Leeds Teaching Hospitals NHS Trust Brighton and Sussex University Hospitals NHS Trust East Sussex Healthcare NHS Trust The Whittington Hospital NHS Trust North Cumbria University Hospitals NHS Trust Luton and Dunstable University Hospital NHS Foundation Trust King's College Hospital NHS Foundation Trust Homerton University Hospital NHS Foundation Trust SACT Analysis: Now and the future - CIU Away Day - 4 th December

13 Coverage of Brain/CNS diagnostic group: Comparing SACT data with Cancer Waits University Hospital of North Staffordshire NHS Trust 3 Central Manchester University Hospitals NHS Foundation Trust 3 Sheffield Teaching Hospitals NHS Foundation Trust 3 The Christie NHS Foundation Trust 3 Nottingham University Hospitals NHS Trust 3 Derby Hospitals NHS Foundation Trust 3 Alder Hey Children's NHS Foundation Trust 3 The Royal Marsden NHS Foundation Trust 3 The Clatterbridge Cancer Centre NHS Foundation Trust 3 East and North Hertfordshire NHS Trust 3 Barts Health NHS Trust 3 University Hospitals Birmingham NHS Foundation Trust 3 Mid Essex Hospital Services NHS Trust 3 Great Ormond Street Hospital for Children NHS Foundation Trust 3 Cambridge University Hospitals NHS Foundation Trust 3 University Hospitals of Leicester NHS Trust 3 Poole Hospital NHS Foundation Trust 3 Maidstone and Tunbridge Wells NHS Trust 2 The Newcastle upon Tyne Hospitals NHS Foundation Trust 2 South Tees Hospitals NHS Foundation Trust 2 Royal Devon and Exeter NHS Foundation Trust 2 Birmingham Children's Hospital NHS Foundation Trust 2 The Royal Wolverhampton NHS Trust 2 Great Western Hospitals NHS Foundation Trust 2 Royal Liverpool and Broadgreen University Hospitals NHS Trust 2 Leeds Teaching Hospitals NHS Trust 2 University College London Hospitals NHS Foundation Trust 2 University Hospitals Bristol NHS Foundation Trust 2 Royal Surrey County Hospital NHS Foundation Trust 2 United Lincolnshire Hospitals NHS Trust 2 University Hospital Southampton NHS Foundation Trust 2 Guy's and St Thomas' NHS Foundation Trust 2 Hull and East Yorkshire Hospitals NHS Trust 2 Norfolk and Norwich University Hospitals NHS Foundation Trust 2 North Cumbria University Hospitals NHS Trust 2 Royal Berkshire NHS Foundation Trust 2 Shrewsbury and Telford Hospital NHS Trust 2 Lancashire Teaching Hospitals NHS Foundation Trust 2 Plymouth Hospitals NHS Trust 2 Royal Cornwall Hospitals NHS Trust 2 Northampton General Hospital NHS Trust 2 13 SACT Analysis: Now and the future - CIU Away Day - 4 th December

14 Coverage of Brain/CNS diagnostic group: Comparing SACT data with Cancer Waits The Princess Alexandra Hospital NHS Trust -1 Hinchingbrooke Health Care NHS Trust -1 The Whittington Hospital NHS Trust -1 Barnsley Hospital NHS Foundation Trust -1 Isle of Wight NHS Trust -1 North West London Hospitals NHS Trust -1 University Hospitals of Morecambe Bay NHS Foundation Trust -1 Pennine Acute Hospitals NHS Trust -1 University Hospital of South Manchester NHS Foundation Trust -1 Bradford Teaching Hospitals NHS Foundation Trust -1 St George's Healthcare NHS Trust -1 Aintree University Hospital NHS Foundation Trust -1 Surrey and Sussex Healthcare NHS Trust -1 Peterborough and Stamford Hospitals NHS Foundation Trust -1 James Paget University Hospitals NHS Foundation Trust -1 Lewisham and Greenwich NHS Trust -1 Stockport NHS Foundation Trust -1 Northern Devon Healthcare NHS Trust -1 East Lancashire Hospitals NHS Trust -1 Barnet and Chase Farm Hospitals NHS Trust -1 Walsall Healthcare NHS Trust -1 Luton and Dunstable University Hospital NHS Foundation Trust -1 Tameside Hospital NHS Foundation Trust -1 Northern Lincolnshire and Goole NHS Foundation Trust -1 Weston Area Health NHS Trust -1 Chelsea and Westminster Hospital NHS Foundation Trust -1 West Suffolk NHS Foundation Trust -1 Hampshire Hospitals NHS Foundation Trust -1 Doncaster and Bassetlaw Hospitals NHS Foundation Trust -1 Northumbria Healthcare NHS Foundation Trust -1 Southport and Ormskirk Hospital NHS Trust -1 Portsmouth Hospitals NHS Trust -1 King's College Hospital NHS Foundation Trust -1 Medway NHS Foundation Trust -1 The Dudley Group NHS Foundation Trust -1 Basildon and Thurrock University Hospitals NHS Foundation Trust -1 Dorset County Hospital NHS Foundation Trust -1 Queen Victoria Hospital NHS Foundation Trust -1 York Teaching Hospital NHS Foundation Trust -1 Mid Cheshire Hospitals NHS Foundation Trust -1 Ealing Hospital NHS Trust -1 Nottinghamshire Healthcare NHS Trust -1 Airedale NHS Foundation Trust -1 Chesterfield Royal Hospital NHS Foundation Trust -1 South Tyneside NHS Foundation Trust -1 Harrogate and District NHS Foundation Trust -1 The Queen Elizabeth Hospital, King's Lynn, NHS Foundation Trust -1 Salisbury NHS Foundation Trust -1 Frimley Park Hospital NHS Foundation Trust -1 Royal Brompton & Harefield NHS Foundation Trust -1 Warrington and Halton Hospitals NHS Foundation Trust -1 Mid Staffordshire NHS Foundation Trust -1 The Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust -1 Sandwell and West Birmingham Hospitals NHS Trust -1 West Hertfordshire Hospitals NHS Trust -1 City Hospitals Sunderland NHS Foundation Trust -1 Kettering General Hospital NHS Foundation Trust -1 Mid Yorkshire Hospitals NHS Trust -1 East Cheshire NHS Trust -1 Bedford Hospital NHS Trust -1 Wye Valley NHS Trust -1 Homerton University Hospital NHS Foundation Trust -1 Western Sussex Hospitals NHS Foundation Trust -1 Heart of England NHS Foundation Trust -1 East Kent Hospitals University NHS Foundation Trust -1 Croydon Health Services NHS Trust -1 South Warwickshire NHS Foundation Trust -1 Royal Free London NHS Foundation Trust -1 Wirral University Teaching Hospital NHS Foundation Trust -1 Burton Hospitals NHS Foundation Trust -1 East Sussex Healthcare NHS Trust -1 Sherwood Forest Hospitals NHS Foundation Trust -1 St Helens and Knowsley Hospitals NHS Trust -1 Countess of Chester Hospital NHS Foundation Trust -1 Wrightington, Wigan and Leigh NHS Foundation Trust -1 North Bristol NHS Trust -1 Epsom and St Helier University Hospitals NHS Trust -1 Dartford and Gravesham NHS Trust -1 Taunton and Somerset NHS Foundation Trust -1 County Durham and Darlington NHS Foundation Trust -1 Kingston Hospital NHS Foundation Trust -1 Calderdale and Huddersfield NHS Foundation Trust -1 Gateshead Health NHS Foundation Trust -1 Ashford and St Peter's Hospitals NHS Foundation Trust -1 The Hillingdon Hospitals NHS Foundation Trust -1 Blackpool Teaching Hospitals NHS Foundation Trust -1 Bolton NHS Foundation Trust -1 North Middlesex University Hospital NHS Trust -1 George Eliot Hospital NHS Trust -1 The Rotherham NHS Foundation Trust -1 Salford Royal NHS Foundation Trust -1 North Tees and Hartlepool NHS Foundation Trust -1 South London Healthcare NHS Trust SACT Analysis: Now and the future - CIU Away Day - 4 th December

15 Coverage of Brain/CNS diagnostic group: Comparing SACT data with Cancer Waits List of trusts that are not expected to submit chemotherapy activity (based on CWT data): West Middlesex University Hospital NHS Trust 0 Brighton and Sussex University Hospitals NHS Trust 0 Sheffield Children's NHS Foundation Trust 0 South Devon Healthcare NHS Foundation Trust 0 Colchester Hospital University NHS Foundation Trust 0 Buckinghamshire Healthcare NHS Trust 0 Heatherwood and Wexham Park Hospitals NHS Foundation Trust 0 University Hospitals Coventry and Warwickshire NHS Trust 0 Southend University Hospital NHS Foundation Trust 0 Milton Keynes Hospital NHS Foundation Trust 0 Imperial College Healthcare NHS Trust 0 Worcestershire Acute Hospitals NHS Trust 0 Yeovil District Hospital NHS Foundation Trust 0 Barking, Havering and Redbridge University Hospitals NHS Trust 0 Ipswich Hospital NHS Trust 0 Oxford University Hospitals NHS Trust 0 Gloucestershire Hospitals NHS Foundation Trust 0 Royal United Hospital Bath NHS Trust 0 15 SACT Analysis: Now and the future - CIU Away Day - 4 th December

16 Paediatrics, Teenagers & Young Adults Paediatrics and TYA data remains severely under-reported 16 SACT Analysis: Now and the future - CIU Away Day - 4 th December

17 Route of administration: Oral vs. IV Route distribution for main disease groups based on top 10 trusts by volume of data Brain/CNS Breast Gynae Leukaemia Lower GI Lung Lymphoma Miscellaneous Myeloma Sarcoma Skin Upper GI Urology 21% 23% 27% 52% 39% 41% 38% 37% 44% 60% 43% 61% 74% 51% 75% 31% 53% 53% 54% 37% 35% 62% 52% 35% 32% 25% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Urology Upper GI Skin Sarcoma Myeloma Miscellane ous Lymphoma Lung Lower GI Leukaemia Gynae Breast Brain/CNS Oral 61% 43% 60% 27% 44% 37% 38% 41% 39% 52% 23% 21% 74% Intravenous 32% 52% 35% 62% 35% 37% 54% 53% 53% 31% 75% 51% 25% Other 7% 5% 4% 10% 20% 24% 7% 6% 6% 16% 2% 28% 1% Not recorded 1% 1% 0% 1% 1% 2% 1% 0% 2% 1% 0% 0% 0% *For trusts regularly submitting data on route of administration 17 SACT Analysis: Now and the future - CIU Away Day - 4 th December

18 % of total records (patients) Route of administration: Oral vs. IV Route distribution for top 10 trusts by volume of Brain/CNS data 100% 90% 80% 24% 24% 24% 24% 27% 23% 24% 26% 27% 70% 60% 50% 40% 30% 75% 74% 75% 74% 72% 76% 74% 72% 72% 20% 10% 0% January 2014 February 2014 March 2014 April 2014 May 2014 June 2014 July 2014 August 2014 Not recorded 0% 0% 0% 0% 0% 0% 0% 0% 0% Other 1% 1% 1% 2% 1% 1% 1% 1% 1% Intravenous 24% 24% 24% 24% 27% 23% 24% 26% 27% Oral 75% 74% 75% 74% 72% 76% 74% 72% 72% Month of cycle start September 2014 *For trusts regularly submitting data on route of administration 18 SACT Analysis: Now and the future - CIU Away Day - 4 th December

19 Route of administration: Oral vs. IV Route distribution for top 10 trusts by volume of Brain/CNS data 70% 66% 91% 71% 65% 74% 76% 82% 74% 75% The Christie NHS Foundation Trust University College London Hospitals NHS Foundation Trust The Clatterbridge Cancer Centre NHS Foundation Trust Sheffield Teaching Hospitals NHS Foundation Trust Leeds Teaching Hospitals NHS Trust Cambridge University Hospitals NHS Foundation Trust Guy's and St Thomas' NHS Foundation Trust Lancashire Teaching Hospitals NHS Foundation Trust The Newcastle Upon Tyne Hospitals NHS Foundation Trust University Hospital of North Staffordshire NHS Trust 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% University Hospital of North Staffordshire NHS Trust The Newcastle Upon Tyne Hospitals NHS Foundation Trust Lancashire Teaching Hospitals NHS Foundation Trust Guy's and St Thomas' NHS Foundation Trust Cambridge University Hospitals NHS Foundation Trust Leeds Teaching Hospitals NHS Trust Sheffield Teaching Hospitals NHS Foundation Trust The Clatterbridge Cancer Centre NHS Foundation Trust University College London Hospitals NHS Foundation Trust The Christie NHS Foundation Trust Oral 75% 74% 82% 76% 74% 65% 71% 91% 66% 70% Intravenous 25% 26% 17% 24% 26% 35% 29% 9% 30% 28% Other 0% 0% 1% 0% 1% 0% 0% 0% 4% 2% Not recorded 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 19 SACT Analysis: Now and the future - CIU Away Day - 4 th December

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21 Top Regimens by Diagnostic Group Brain/CNS All treatment intent ICD10: C47, C69-C72 All submitting trusts aggregated Data received for October September Patients aged 16 and over These reports are available at a provider level There are in excess of 100 regimens for this disease group

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23 Post Chemotherapy Mortality Analysis From 25 th July 2014 all NHS providers of chemotherapy in England have been able to access their 30/60/90-day post chemotherapy mortality analysis through the secure online portal. This analysis is available by tumour group and will provide a national comparison. It is essential that clinical teams within provider organisations check the accuracy of their data and contact the team in Oxford where there are any possible discrepancies. A letter to Medical Directors and Lead Chemotherapy Consultants has been sent out raising awareness of these reports.

24 Post Chemotherapy Mortality Analysis (2) For demonstration purposes only

25 Post Chemotherapy Survival Analysis Brain/CNS all treatment intents For demonstration purposes only

26 Online Regimen Mapping Tool Launched Providers now have the responsibility to map their local regimen names to nationally recognised regimen nomenclature using the new mapping tool. The tool was tested by members of the SACT User Group, before being launched on the upload portal. Using feedback, the written guidelines and step by step guide have been produced in conjunction with senior pharmacists who are supporting the team. We currently have over 50 registered users with the new role of Regimen mapping

27 Have You: We want to identify best practice across England and share it! Improved SACT data quality by introducing new processes? Used your local SACT data to improve services, or your understanding of chemotherapy? Shared all SACT reports (Data Quality, Top Regimen, Benchmarking and the mortality reports) with your pharmacy and oncology teams members in order to improve understanding SACT and its purpose? If yes, please contact us at

28 Improving Stakeholder Engagement Members of the CIU team will be attending the following meetings: NHS England Area Team Pharmacist Meeting NHS England Chemotherapy Clinical Reference Group Chemotherapy Clinical Information Group NCIN Site Specific Clinical Reference Groups (SSCRG) e.g. Breast meeting Would you like to know more about SACT? Please contact the team, we are always happy to discuss the project or meet with you.