REPORT ON PROSPECTIVE AUDIT OF LYMPHOMA PATIENTS BORDERS, FIFE, AND LOTHIAN DIAGNOSED IN 2008

Transcription

1 SE Scotland Cancer Network SCAN AUDIT REPORT ON PROSPECTIVE AUDIT OF LYMPHOMA PATIENTS BORDERS, FIFE, AND LOTHIAN DIAGNOSED IN 2008 Reports prepared by: Christine Maguire SCAN Cancer Audit Facilitator (Lothian & Borders) Kathy Burton Cancer Audit Team Leader (Fife) Alison Allen, SCAN Cancer Audit Manager Final Version: Signed off by Dr John M Davies Dr Kerri L Davidson Dr John Tucker Lead Clinician Lothian Lead Clinician Fife Lead Clinician Borders W SA H05/10 SCAN Audit Office, c/o Department of Clinical Oncology, Western General Hospital, Crewe Road, Edinburgh EH4 2XU T: W: F: Alison.Allen@luht.scot.nhs.uk SCAN Audit is funded through "Cancer in Scotland: Action for Change" investment

2 CONTENTS Page 1 Comment by Dr John Davies, SCAN Chair 3 2 Introduction and Methods 5 3 Results: All Lymphomas 3.1 Patient Numbers and Case Ascertainment Multidisciplinary Management of Patients HIV Test All Lymphomas Timings All Lymphomas Performance status All Lymphomas 13 4 Results: Lymphoma sub-types 4.1 Diffuse Large B-Cell Lymphomas Overall Survival 14 and Outcomes 4.2 CEPP and R-CEPP chemotherapy in elderly 15 patients with DLBCL 4.3 Hodgkin s Lymphoma: Overall Survival and 16 Outcome by Age Group 4.4 Follicular Lymphoma: Overall Survival 17 DOCUMENT HISTORY Version Circulation Date Comments V1.1@ 10/05/2010 To SCAN Haematology Group 10/05/2010 Discussion by subgroup of the SCAN Group a number of amendments suggested e.g. CR at 12 months only for V1.2@08/06/2010 V2@04/08/2010 To SCAN Chair and SCAN Audit Manager for comment To SCAN Haematology Group DLBCL and HL 10/06/2010 Amendments incorporated and agreed and Chair s comment drafted and added 05/08/2010 Final comments requested by 19/08/2010 V3@24/08/2010 V3(W) V3(W) For circulation to Clinical Governance Groups Report reviewed for disclosive material to assess the risk of communication of personally identifiable information about a data subject Report uploaded to SCAN website 31/08/2010 Final Signed off Report December 2010 December 2010 Amendments made to Table 3.3 W SA H05/10 SCAN Audit

3 LYMPHOMA AUDIT REPORT 2008: 1 OVERALL COMMENT BY LEAD CLINICIAN Dr John Davies I am pleased to present the SCAN Haematology Group Comparative Audit Report on data relating to patients newly-diagnosed with Lymphoma in the year 2008 who were treated in three of the network s four constituent health board areas (Borders, Fife and Lothian, and the tertiary centre in Edinburgh). Lymphoma patients in Dumfries & Galloway are managed, and their treatment audited, through West of Scotland Cancer Network. Comparing results between health board services within the network offers the opportunity to consider any specific points of difference. The report also compares results between the three years It is important to demonstrate consistency and (where necessary) improvement in results over time. We have been collecting the nationally-agreed dataset in SCAN health boards from The process of collection of the nationally-agreed Haematological Malignancies dataset is now well-established and this report presents results based on very comprehensive coverage of patients newly-diagnosed with Lymphoma in the three health board areas it covers. Results have been reviewed and checked locally by Lymphoma Lead Clinicians. This means that we can be confident in the accuracy of the results shown. Allowance has to be made in reviewing results where numbers are small and variation may be due to chance. Aggregation of results over time will help to clarify results where numbers in any one year are small. An important aim of the network is to monitor the quality of clinical care received by Lymphoma patients against nationally-agreed standards. At present there are no Scottish nationally-agreed clinical quality standards specific to haematological malignancies. We look forward to the results of ongoing work through the National Cancer Quality Group on developing Quality Performance Indicators (QPIs). In the absence of nationally-agreed standards for process of care we have, in this report, related two results to the NICE Guidance on Improving Outcomes in Haematological Cancers ( One of these has shown that while the great majority of patients are discussed at the weekly multidisciplinary meeting further work on patient pathways needs to be done to ensure that for most patients this occurs before treatment, rather than after treatment has started. See Action Points below. SCAN Audit 2

4 Outcome of treatment is the most important piece of information we need to indicate the quality of our care and we have been able to collect data on follow-up since This report provides information on outcomes since that date and we hope to add to it in subsequent years, providing that resource for collection of the data continues to be available. We have also incorporated into the report information on an additional study undertaken using the data collected to investigate use of chemotherapy (CEPP/R- CEPP) in older patients with significant co-morbidities suffering from diffuse large B cell lymphoma. The results show reasonable efficacy with very low toxicity in this difficult patient group in the first line setting. The use of these regimes in the relapse setting is however no longer recommended based on the study data. In the SCAN Haematology network we hope very much for improved opportunities to compare results across Scotland with the aim of ensuring the best quality care and prompting continuous improvement of the service we provide to patients in S E Scotland. John Davies Chair, SCAN Haematology Group 7 th July 2010 ACTION POINTS Listed below are some possible areas for improvement identified through the report with proposed action outlined against each: Report Possible area for Section improvement 3.2 Increase percentage of patients treated after, rather than before, MDM discussion 3.4 Increase percentage of patients treated <4 weeks from diagnosis to treatment 3.5 Improve recording of performance status 4.4 Investigate cause-specific survival in patients with Follicular Lymphoma Proposed action Audit actual versus planned delivery of treatment for report in 2009 Comparative Report Review use of NICE standard in light of new Scottish Government Health Dept cancer waits target of 31 days Decision to Treat to first treatment which may be more appropriate. More vigilance required in ensuring information provided when patient discussed at MDM Because of small numbers requires longer-term aggregation of results review aggregated 2008/9 results to assess Which clinical standard will this meet? NICE Guidance on Improving Outcomes in Haematological Cancers 1A p 29 NICE Guidance on Improving Outcomes in Haematological Cancers 1D p31 No specific standard but required as vital component of risk stratification No specific standard relating to Haematological Malignancies SCAN Audit 3

5 2 INTRODUCTION AND METHODS COHORTS 1 This report provides a selection of the data recorded on patients diagnosed with lymphoma in Borders, Fife, and Lothian Health Board areas in the calendar year Management and audit of patients in Dumfries & Galloway is through the West of Scotland Cancer Network. DATASET 2 Data has been collected in line with the nationally agreed dataset and definitions for Lymphomas published by ISD 1 July , as amended for all haematological malignancies from 1 January Registrations for all types started in Lothian from AUDIT PROCESS 3 Data is captured onto an Access database. Registration of patients and some of the additional data is captured as part of the weekly multidisciplinary team meeting (MDM) process. Remaining data is re-entered from the clinical record (casenotes and electronic systems). LEAD CLINICIANS AND AUDIT PERSONNEL 4 Lead clinicians with responsibility for report sign-off: Lothian and SCAN: Dr John Davies, Consultant Haematologist Fife: Dr Kerri Davidson, Consultant Haematologist Borders: Dr John Tucker, Consultant Haematologist 5 Data capture for Lothian and Borders was by Christine Maguire, SCAN Cancer Audit Facilitator. Assistance in database matters, data querying, and reporting is provided by Alison Allen and other members of the SCAN Audit Team. 6 Data capture for Fife was by Jane Pearston, Cancer Audit Facilitator and Kathy Burton, Fife Cancer Audit Team Leader DATA QUALITY Estimate of Case Ascertainment The first table in this report provides information on the number of patients included in the audit compared with the number expected based on comparison with a 5-year average from the Scottish Cancer Registry. This comparison shows very comprehensive coverage of patients newly-diagnosed with Lymphoma in the three health board areas it covers. Results have been reviewed and checked locally by Lymphoma Lead Clinicians. ¹ National Data Definitions for National Minimum Core Data Set for Haematological Malignancies Developed by ISD Scotland in conjunction with the Regional Cancer Networks v1.2 December 2007 SCAN Audit Lymphoma Report 2008 Version 3 5 W SA H05/10

6 7.2 Accuracy of data recording SCAN participates in external QA of data by ISD. No formal QA of Lymphoma data has yet been undertaken. A number of database validations are in place. In Lothian, Borders and Fife data is recorded, for discussion of each patient at the weekly multidisciplinary meeting, on the MDM/audit database. A summary is printed off following the meeting and signed off by a clinician, for incorporating into patient casenotes. 7.3 Clinical sign-off Data from reports prepared for individual hospitals is signed off as accurate following review between the lead clinicians from each service and the audit staff. Once collated into a draft comparative report it is reviewed by a group of clinicians, before final sign-off is agreed. REPORTING AND ANALYSIS 8 At present there are no nationally-agreed standards for Haematological malignancies. The report presents descriptive data on both clinical process and outcomes of patients diagnosed in 2008 together with measurement of some of the clinical guidelines published by NICE 2. DISSEMINATION OF REPORT 9 Following final sign-off the Report was sent on 01/09/2010 to Clinical Governance Groups, Lead Managers and Chairs in the three Health Boards and to the SCAN Regional Cancer Planning Group. In preparation of publication of the Report on the SCAN website the contents were reviewed for Disclosive Material to assess any risk of communication of personally-identifiable and sensitive information about a data subject. An adjustment was made to Table 3.3. ²NICE National Institute for Clinical Excellence: Guidance on Improving Outcomes in haematological Cancers October 2003 SCAN Audit 6

7 3.1 PATIENT NUMBERS IN AUDIT AND CASE ASCERTAINMENT 2008 Borders Fife Lothian SCAN Diffuse Large B-Cell Lymphoma Follicular Hodgkin s Lymphoma Other Lymphomas TOTALS Cancer Registration Average from 5-year Summary * Percentage estimated case ascertainment 88.9% 95.9% 94.8% 94.5% COMPARISON OF NUMBERS IN AUDIT 2006, 2007 AND 2008 Diffuse Large B-Cell Follicular Hodgkin s Lymphoma BORDERS Other Cancer Lymph Registration omas TOTAL * (96.3%) (74.1%) (88.9%) 27 FIFE (82.2%) (71.2%) (95.9%) 73 LOTHIAN (94.8%) (110.5%) (94.8%) 172 *Source: Information and Statistics Division, Scotland. Annual average from 5-year Summary * The high estimated case ascertainment, when compared with a Scottish Cancer Registry average from previous years, contributes to confidence in the quality of the data. SCAN Audit 7

8 Breakdown of Other Lymphomas 2008 Borders Fife Lothian SCAN Lymphocytic Lymphoplasmacytic Burkitt s Lymphoma Mantle Cell Marginal Zone/Extranodal Marginal Zone Splenic Marginal Zone Anaplastic Large Cell Alk -ve Angioimmunoblastic T cell unspecified Peripheral T Cell Other B Cell Lymphoma Lymphoma Unclassifiable Primary Cutaneous Anaplastic Large Cell Lymphoma Post Transplant LPD Mediastinal (Thymic) Large B Cell Lymphoma Total SCAN Audit 8

9 3.2 MULTIDISCIPLINARY MANAGEMENT OF PATIENTS Discussed at MDM All Lymphomas 2008 BGH Fife Lothian SCAN No % No % No % No % Yes No TOTALS Treatment before/same day as MDM Treatment Started at MDM - All Lymphomas SCAN SCAN 2006 SCAN 2007 SCAN 2008 No % No % No % Treatment after MDM Missing data N/A (not MDMd) TOTALS Treatment before/same day as MDM Treatment Started at MDM - All Lymphomas BGH BGH 2006 BGH 2007 BGH 2008 No % No % No % Treatment after MDM Missing data N/A (not MDMd) TOTALS SCAN Audit 9

10 MULTIDISCIPLINARY MANAGEMENT OF PATIENTS cont d Treatment before/same day as MDM Treatment Started at MDM - All Lymphomas Fife Fife 2006 Fife 2007 Fife 2008 No % No % No % Treatment after MDM Missing data N/A (not MDMd) TOTALS Treatment before/same day as MDM Treatment Started at MDM - All Lymphomas Lothian Lothian 2006 Lothian 2007 Lothian 2008 No % No % No % Treatment after MDM Missing data N/A (not MDMd) TOTALS NICE Guidance on Improving Outcomes in Haematological Cancers 1 A p29 No definitive treatment should be given for haematological cancer, with the exception of highly aggressive conditions such as Burkitt s Lymphoma or Acute Leukaemia without discussion by the appropriate MDT. The majority of patients are still treated on or before the day of the MDM in all SCAN Boards. The Group will continue to work on patient pathways to see whether this aspect of care can be improved as most patients should go through an MDM discussion prior to a decision to treat being made. Further audit is to be undertaken to document actual versus planned delivery of treatment. SCAN Audit 10

11 3.3 HIV TEST - ALL LYMPHOMAS - COMPARISON 2005, 2006, 2007 and 2008 HIV TEST - ALL LYMPHOMAS SCAN - COMPARISON 2005, 2006, 2007 and 2008 SCAN Done Not requested/done Total Although application of HIV testing is becoming more common in practice, the group have not yet fully adopted HIV testing opt out as opposed to opt in as the standard of care. It is recognised that further discussion is needed before this approach can be fully implemented. All health board areas routinely test patients for Hepatitis B and C before treatment with Rituximab. SCAN Audit 11

12 3.4 TIMINGS ALL LYMPHOMAS Patient numbers in these fields are based on those submitted to the Scottish Government to measure the quarterly waiting times target. For these returns some patients were excluded from the analysis on the grounds of co-morbidities, patient induced delay, died before treatment or clinical reasons. Time from Referral to Diagnosis 2008 BGH Fife Lothian SCAN No % No % No % No % <31 days >31 days TOTALS Median Range Time from Diagnosis to 1st Treatment 2008 BGH Fife Lothian SCAN No % No % No % No % <31 days >31 days TOTALS Median Range NICE Guidance on Improving Outcomes in Haematological Cancers 1.D. p.31 Time from diagnosis to first treatment: should be less than 4 weeks. 25% of patients still fail the waiting times target. This partly reflects the definition of day of diagnosis but also reflects capacity pressures within chemotherapy and radiotherapy services. This represents a continuing area of concern. Time from Diagnosis to 1st Treatment 2007 BGH Fife Lothian SCAN No % No % No % No % <31 days >31 days TOTALS Median 20 9 Range Time from Diagnosis to 1st Treatment 2006 BGH Fife Lothian SCAN No % No % No % No % <31 days >31 days TOTALS Median Range SCAN Audit 12

13 3.5 PERFORMANCE STATUS ALL LYMPHOMAS - SCAN Performance Status No % No % No % Normal activity Symptoms but ambulatory Up & about >50% Confined to bed or chair >50% Completely disabled Not recorded/missing Data Total The recording of performance status continues to improve but must achieve >95% as performance status is a vital component of risk stratification in both low grade and high grade NHL and is accordingly essential for proper interpretation of outcome data SCAN Audit 13

14 4 RESULTS: LYMPHOMA SUB-TYPES 4.1 DIFFUSE LARGE B CELL LYMPHOMA (DLBCL): OVERALL SURVIVAL AND OUTCOMES Complete Remission by Stage for DLBCL at Date Last Seen 350 days BGH Fife Lothian SCAN Total Number DLBCL No CR % CR No CR % CR No CR % CR No CR % CR Total Number DLBCL in CR Total Number Stage I/II DLBCL in CR Total Number Stage III/IV DLBCL in CR Total Number DLBCL Not Staged in CR Overall Survival DLBCL BGH Fife Lothian SCAN Status at Date Last Seen No % No % No % No % Alive but <350 days at DLS Alive at DLS 350 days Dead Not recorded Total Outcome at DLS 350 days Outcome by Age Group DLBCL - SCAN >70 Total No % No % No % No % Complete Remission Partial Remission Stable Disease Relapsed Disease Refractory Disease Death Unsure/NR FU <12 months Total These data are encouraging in terms of survival at 12 months and compare very reasonably with national and international comparators. Data from the recently published MRC DLBCL studies³ to which SCAN was a major contributor are confirmatory. The group in addition specifically audited outcomes in older patients treated with two chemotherapy regimes of potentially low toxicity and these data are included below. ³Journal of Clinical Oncology Vol 27, No 15S (May 20 Supplement), 2009: 8506 SCAN Audit 14

15 SCAN Audit 15

16 4.3 HODGKIN S LYMPHOMA: OVERALL SURVIVAL AND OUTCOME BY AGE GROUP Overall Survival Hodgkin s Lymphoma BGH Fife Lothian SCAN Status at Date Last Seen (DLS) No % No % No % No % Alive at DLS 350 days Dead Total Outcome by Age Group Hodgkin s Lymphoma - SCAN Outcome at DLS >70 Total days No % No % No % No % Complete Remission Partial Remission Stable Disease Relapsed Disease Refractory Disease Death Unsure/NR FU <12 months Total These results accord with other population-based data but demonstrate the well recognised higher mortality of Hodgkin s Lymphoma in older patients. SCAN Audit 16

17 4.4 OVERALL SURVIVAL FOR FOLLICULAR LYMPHOMA DIAGNOSED 2008 FOLLICULAR LYMPHOMA Overall Survival Follicular Lymphoma BGH Fife Lothian SCAN Status at Date Last Seen No % No % No % No % Alive at DLS 350 days Dead Total This data should be considered preliminary given the long natural history of Follicular Lymphoma in many patients. Separate audit is needed to look at cause specific survival in this cohort as overall survival appears lower than would be predicted. SCAN Audit 17