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Assessment of risk of disclosure of sensitive personal information has been undertaken SCAN Audit Office, c/o Department of Clinical Oncology, Western General Hospital, Crewe Road, Edinburgh EH4 2XU T: 0131 537 2266 W: www.scan.scot.nhs.uk [email protected] SOUTH EAST SCOTLAND CANCER NETWORK (SCAN) LYMPHOMA 2014-15 Comparative Audit Report Dr Fiona Scott, NHS Lothian, Lead Haematology Clinician, SCAN Haematology group chair. Dr Jennifer. Buxton, NHS Borders Dr Kerri Davidson, NHS Fife Valerie Findlay SCAN Haematology Cancer Audit Facilitator Alison Robertson, Cancer Audit Facilitator, NHS Fife Report Number: SA H0716
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Page 1: LYMPHOMA 2014-15 Comparative Audit Report Comparative...Assessment of risk of disclosure of sensitive personal information has been undertaken SCAN Comparative Lymphoma QPI Report

Assessment of risk of disclosure of sensitive personal information has been undertaken

SCAN Audit Office, c/o Department of Clinical Oncology, Western General Hospital, Crewe Road, Edinburgh EH4 2XU T: 0131 537 2266 W: www.scan.scot.nhs.uk [email protected]

SOUTH EAST SCOTLAND CANCER NETWORK (SCAN)

LYMPHOMA 2014-15 Comparative Audit Report Dr Fiona Scott, NHS Lothian, Lead Haematology Clini cian, SCAN Haematology group chair. Dr Jennifer. Buxton, NHS Borders Dr Kerri Davidson, NHS Fife Valerie Findlay SCAN Haematology Cancer Audit Facilitator Alison Robertson, Cancer Audit Facilitator, NHS Fif e Report Number: SA H0716

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Table of Contents Document history ...................................................................................................... 3

Chair Summary ......................................................................................................... 4

Action Points ............................................................................................................. 5

Introduction and Methods .......................................................................................... 6

Audit Process ............................................................................................................ 7

Data Quality .............................................................................................................. 8

Estimate of Case Ascertainment ............................................................................... 8

Quality Assurance ..................................................................................................... 8

Clinical Sign-Off ........................................................................................................ 9

Cancer Quality Performance Indicators Results Summary ...................................... 10

QPI 1 Radiological Staging ...................................................................................... 11

QPI 2 Treatment Response ..................................................................................... 13

QPI 3 Positron Emission Tomography (PET CT) Staging ........................................ 15

QPI 4 Cytogenetic Testing ....................................................................................... 17

QPI 5 Lymphoma MDT ............................................................................................ 19

QPI 6 Treatment for follicular Lymphoma and Diffuse Large B Cell Lymphoma ....... 21

QPI 7 Treatment of Grade 3b Follicular Lymphoma................................................. 23

QPI 8 Treatment of stage 1A DLBCL ...................................................................... 25

QPI 9 Treatment of Classical Hodgkin Lymphoma (CHL) ........................................ 27

QPI 10 Primary Cutaneous Lymphoma ................................................................... 29

QPI 11 Hepatitis and HIV Status ............................................................................. 30

Clinical Trials QPI .................................................................................................... 32

Appendix ................................................................................................................. 33

Summary of patients in cohort .................................................................... 33

Breakdown of “Other” Lymphomas 2014-15 .............................................. 33

Age and sex distribution .......................................................................................... 36

GLOSSARY of Terms ................................................................................ 37

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Document history

Version Circulation Date Comments

Version 1.0 Lead clinicians 17/06/16 Draft results & outliers

circulated

Version 2.0 SCAN Haematology Group Lead clinicians

19/07/16 Action points and comments agreed

Version 3.0 SCAN Haematology Group 25/8/16 Final comments received

and report updated

Final Version SCAN Haematology Group SCAN Governance Framework SCAN Action Plan Board Leads

16/09/16 Completed action plans to

be received by 12th October

Web version Published to SCAN Website Feb 2017

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Chair Summary The SCAN Haematology group continued to work to improve quality of care of patients with Haematological malignancies during 2015. This report includes the second year review of SCAN performance against the Lymphoma Quality Performance Indicator programme (QPIs). Results from SCAN as a whole found that QPI targets were met in six of eleven areas, and overall performance had improved considerably over the last 12 months. Failure to meet QPI targets varied and specific issues apposite to individual targets are discussed in the relevant sections. It is clear however that there needs to be better definition of inclusion and exclusion criteria for some of the QPI goals; for example QPI 8, which relates to treatment of Stage 1A Diffuse large B Cell NHL, does not at present allow for the distinct, evidence based management of Stage 1A Testicular Lymphoma. The radiological based QPIs do not allow for Lymphoma diagnostic pathway complexity. Failure to meet QPI 1 part II is due, in the main, to the fact that more than one team may be involved in a Lymphoma diagnosis. The SCAN Audit team will present an overview of the National performance against both the Lymphoma and Acute Leukaemia QPIs at a national meeting in November, this will hopefully allow discussion re some of these issues. Despite the limitations of some of the QPI standards, their introduction has helped deliver improvements within the diagnostic process. QPI 4 has proved beneficial in increasing access to MYC analysis of cases of Diffuse Large B cell NHL. Likewise, there has been a further improvement in evaluation of Hepatitis and HIV status, Fife have initiated an online request profile to improve compliance further. SCAN performed well within the recent Macmillan national patient survey re the delivery of care and support for patients with haematological malignancies. There is clearly more work to be done, particularly in relation to long term treatment effects, but overall review within the survey was positive. The implementation of two new Clinical nurse specialist posts, one to support patients with Lymphoma and the other to support patients with Myeloproliferative disorders, has proved a very positive development. The Treatment outcome remains an extremely important indicator of quality of care, and local survival data continues to compare favourably with published population-based related outcomes. In summary, there remains scope for improvement, however SCAN ‘s performance against the Lymphoma QPIs has improved and there are no major areas of concern. Overall performance within SCAN compared favourably to that achieved across the other networks. We remain very reliant on our excellent Audit team, who have worked hard to produce high quality data, both in relation to the QPI performance and survival outcome.

Fiona Scott SCAN Haematology Clinical Lead July 2016

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Action Points Action Points 2014-15 Actions were identified at SCAN QPI sign off meeting on 17/05/2016

QPI Action Required Person Responsible

Date for update

QPI 1 National discussion of complex pathways required at National Meeting

Fiona Scott 18/11/16

QPI 4 Initiate system to ensure timely MYC testing is performed on appropriate patients in Fife and Lothian

Fiona Scott Kerri Davidson

12/09/16

QPI11 All Health Boards need to ensure that virology testing is completed appropriately.

Fiona Scott Kerri Davidson Jenny Buxton

12/09/16

In order to achieve the above action points there has to be good communication at the regional MDM and accurate recording of information on outcome sheets by both the Cancer Audit Facilitators and clinicians. Action Points from 2013-14

QPI Action Required Person Responsible

Progress at Board Level

QPI 1

Work with ISD to find a more accurate method of measuring timing of radiological staging.

Cancer Quality Programme, Jen Doherty.

Measurability document updated at baseline review

QPI 3

Work with Radiology to ensure baseline PET scan is performed within scope of QPI.

Fiona Scott and Haematology consultants

Borders: referrals go through Lothian so no action required locally. Fife: continue to monitor patients undergoing PET, however, the number of patients failing are very small. Lothian: No update from NHS Lothian Health Board was available at time of report.

QPI 4

Work with ISD to measure only patients who are treated with SACT.

Cancer Quality Programme, Jen Doherty.

Measurability document updated at baseline review

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Introduction and Methods Cohort This report covers patients newly diagnosed with Lymphoma in SCAN between 01/10/2014 and 30/09/2015. The results contained within this report have been presented by NHS board of diagnosis.. Dataset and Definitions The QPIs have been developed collaboratively with the three Regional Cancer Networks, Information Services Division (ISD), and Healthcare Improvement Scotland. QPIs will be kept under regular review and be responsive to changes in clinical practice and emerging evidence. The overarching aim of the cancer quality work programme is to ensure that activity at NHS board level is focussed on areas most important in terms of improving survival and patient experience whilst reducing variance and ensuring safe, effective and person-centred cancer care. Following a period of development, public engagement and finalisation, each set of QPIs is published by Healthcare Improvement Scotland1. Accompanying datasets and measurability criteria for QPIs are published on the ISD website2. NHS boards are required to report against QPIs as part of a mandatory, publicly reported, programme at a national level. The QPI dataset for Lymphoma was implemented from 01/10/2013, and this is the second publication of QPI results for Lymphoma within SCAN. The standard QPI format is shown below: QPI Title: Short title of Quality Performance Indicator (for use in reports etc.)

Description: Full and clear description of the Quality Performance Indicator.

Rationale and Evidence:

Description of the evidence base and rationale which underpins this indicator.

Specifications:

Numerator: Of all the patients included in the denominator those who meet the criteria set out in the indicator.

Denominator: All patients to be included in the measurement of this indicator.

Exclusions: Patients who should be excluded from measurement of this indicator.

Not recorded for numerator:

Include in the denominator for measurement against the target. Present as not recorded only if the patient cannot otherwise be identified as having met/not met the target.

Not recorded for exclusion:

Include in the denominator for measurement against the target unless there is other definitive evidence that the record should be excluded. Present as not recorded only where the record cannot otherwise be definitively identified as an inclusion/exclusion for this standard.

Not recorded for denominator:

Exclude from the denominator for measurement against the target. Present as not recorded only where the patient cannot otherwise be definitively identified as an inclusion/exclusion for this standard.

Target:

1 QPI documents are available at www.healthcareimprovementscotland.org 2 Datasets and measurability documents are available at www.isdscotland.org

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Audit Process Data was analysed by the audit facilitators in each NHS board according to the measurability document provided by ISD. SCAN data was collated by Valerie Findlay, SCAN Audit Facilitator for Haematology. Data capture is focused round the process for the weekly multidisciplinary meetings ensuring that data covering patient referral, investigation and diagnosis is being picked up through the routine process. Oncology data is obtained either from the clinical records (electronic systems and case notes) or by downloads from Aria from the Department of Clinical Oncology database within the Edinburgh Cancer Centre (ECC). Each of the 3 hospitals provides chemotherapy but radiotherapy is provided centrally in Edinburgh Cancer Centre. Patients living closer to Dundee may opt to have oncology treatment out with the SCAN region. Collecting complete audit data for these patients remains a challenge. The process remains dependent on audit staff for capture and entry of data, and for data quality checking Data was recorded on an Access database for Lothian and Borders, Fife data was collected using E-case. Lead Clinicians and Audit Personnel

SCAN Region Hospital Lead Clinician Audit Support

NHS Borders Borders General Hospital Dr Jennifer Buxton Valerie Findlay

NHS Fife Queen Margaret Hospital/ Victoria Hospital

Dr Kerri Davidson Alison Robertson

SCAN & NHS Lothian

St Johns Hospital Western General Hospital Dr Fiona Scott Valerie Findlay

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Data Quality Estimate of Case Ascertainment An estimate of case ascertainment (the percentage of the population with Lymphoma recorded in the audit) is made by comparison with the Scottish Cancer Registry five year average data from 2010 to 2014. High levels of case ascertainment provide confidence in the completeness of the audit recording and contribute to the reliability of results presented. Levels greater than 100% may be attributable to an increase in incidence. Allowance should be made when reviewing results where numbers are small and variation may be due to chance. Number of cases recorded in audit: patients diagnosed 01/10/2014 to 30/09/2015 Borders Fife Lothian SCAN DLBCL 11 34 56 101 FL 7 10 40 57 HL 3 9 28 40 Other Lymphomas 14 33 80 127 Total 35 86 204 325 Estimate of case ascertainment: calculated using the average of the most recent available five years of Cancer Registry Data (2010-2014) report IR2016-01311 Borders Fife Lothian SCAN HL Cases from Audit 3 9 28 40 HL Cancer Registry 5 Year Average 3 9 26 38 Case Ascertainment % 100 100 107.7 105.2 NHL - Cases from Audit 32 77 176 285 NHL Cancer Registry 5 Year Average 26 63 177 266 Case Ascertainment % 125 122.2 99.4 107.1

Quality Assurance All hospitals in the region participate in a Quality Assurance (QA) programme provided by the National Services Scotland Information Services Division (ISD). QA of the Lymphoma data was carried out in 2015 and overall accuracy percentage results are shown below: Borders Fife Lothian SCAN Accuracy of data recording (%) 98.7 - 96.7 98.5

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Clinical Sign-Off This report compares data from reports prepared for individual hospitals and signed off as accurate following review by the lead clinicians from each service. The collated SCAN results are reviewed jointly by the lead clinicians, to assess variances and provide comments on results:

• Individual health board results were reviewed and signed-off locally. • Collated results were circulated to the Haematology SCAN Group Meeting on

27th July 2016. • Data was submitted to ISD on 29h June 2016 for inclusion in the Lymphoma

National report • Collated results for all health boards in Scotland will be presented at the

Scottish Haematology annual meeting in Dunblane on 18th November 2016 • Final report circulated to SCAN Haematology Group and Clinical Governance

Groups on dd/mm/2016 Actions for Improvement After final sign off, the process is for the report to be sent to the Clinical Governance groups with action plans for completion at Health Board level. The report is placed on the SCAN website with completed action plans once it has been fully signed-off and checked for any disclosive material.

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Cancer Quality Performance Indicators Results Summa ry Lymphoma QPI attainment summary table 2013-2015 Borders Fife Lothian SCAN

Target % Yr1 Yr2 Yr1 Yr2 Yr1 Yr2 Yr1 Yr2

QPI 1. Radiological Staging. Patients should be evaluated with appropriate imaging.

Prior to treatment 90 - 100 - 98.3 - 97.7 - 98.1

Within 2 weeks of request 90 94.4 96 84.4 89.8 70.3 74.4 76.4 81.2

QPI 2. Treatment Response. DLBCL patients who are treated with curative intent should have their response to treatment evaluated with appropriate imaging

90 50 100 72.2 85.2 87.2 91.7 80.3 90.6

QPI 3. PET CT Staging. Patients with Hodgkin Lymphoma should be evaluated with PET CT

Prior to treatment 95 100 100 87.5 90.6

Within 2 weeks of request 95 100 100 66.6 71.4 90.9 62.5 65.6 65.6

QPI 4 - Cytogenetic Testing. Patients with Burkitt’s lymphoma and Diffuse Large B cell Lymphoma (DLBCL) should have MYC testing as part of diagnostic process

60 54.6 100 20.8 26.7 30.5 62.3 30.9 55.3

QPI 5 - Lymphoma MDT following diagnosis 85 83.9 100 87.7 84.0 82.1 78.2 83.8 79.7

QPI 6. Treatment for Follicular Lymphoma and DLBCL. Patients with symptomatic advanced FL and DLBCL should undergo treatment with Rituximab in combination with chemotherapy

95 100 78.1 100 100 96.9 98.5 98.1 99.2

QPI 7 - Treatment of Grade 3b Follicular Lymphoma. Patients with Grade 3b Follicular Lymphoma should receive R-CHOP chemo

95 - 100 - - 100 100 100 100

QPI 8 - Treatment for Stage 1a DLBCL. Patients with nodal, non-bulky stage 1A DLBCL should receive local radiotherapy in combination with limited chemotherapy (3 cycles)

90 - 100 - 50.0 66.7 50.0 66.7 57.1

QPI 9 - Treatment for Classical Hodgkin Lymphoma. Patients with stage 1a or 2a CHL should receive combined modality treatment (chemotherapy and radiotherapy).

80 - 100 0.0 100 42.9 75.0 37.5 80.0

QPI 10 - Primary Cutaneous Lymphoma MDT. Patients with primary cutaneous lymphoma should be discussed at a specialist MDT meeting.

95 - - 100 100 100 100 100 100

QPI 11- Hepatitis and HIV Status. Patients with lymphoma undergoing rituximab based treatment should have hepatitis B, C and HIV status checked prior to treatment

100 100 95 77.1 88.5 95.3 98.8 89.9 94.9

Clinical trials QPI Interventional 7.5 - 0 - 0 - 0.49 - 0.33

Translational 15 - 0 - 0 - 0.49 - 0.33

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QPI Results pages

QPI 1 Radiological Staging

Target = 90%

Numerator i = Number of patients with lymphoma undergoing treatment with curative intent who undergo CT of chest, abdomen and pelvis or PET CT scanning prior to treatment.

Numerator ii = Number of patients with lymphoma undergoing treatment with curative intent who undergo CT of chest, abdomen and pelvis or PET CT scanning prior to treatment and within 2 weeks of radiology request

Denominator = All patients with lymphoma undergoing treatment with curative intent

Exclusions = patients who refuse investigation, patients with primary cutaneous lymphoma. i) Prior to treatment Target 90% Borders Fife Lothian SCAN 2014 -15 cohort 35 86 204 325 Ineligible for this QPI 10 28 75 113 Numerator 25 58 126 209 Not recorded for numerator 0 0 0 0 Denominator 25 59 129 213 Not recorded for exclusions 0 0 0 0 Not recorded for denominator 0 0 0 0 % Performance 100.0 98.3 97.7 98.1 Comments The target was met by all Health Boards. ii) Within 2 weeks of radiology request* Target 90% Borders Fife Lothian SCAN 2014 -15 cohort 35 86 204 325 Ineligible for this QPI 10 28 75 113 Numerator 24 53 96 173 Not recorded for numerator 0 1 0 0 Denominator 25 59 129 213 Not recorded for exclusions 0 0 0 0 Not recorded for denominator 0 0 0 0 % Performance 96.0 89.8 74.4 81.2 Comments Fife: The target was not met showing a shortfall of 0.2% (6 cases). 2 patients did not attend for initial imaging appointments, 2 patients had imaging completed within 19 days.1 patient had incomplete imaging and 1 case did not have date of PET scan request recorded. Lothian: The target was not met with a shortfall of 15.6% (33 cases). The majority of patients had imaging completed within 30 days of request. In 2 cases patients had incomplete imaging. The complex diagnostic pathway contributes to the lower level of compliance, e.g. for a neck lump, initial imaging will be requested by the Head and Neck team who follow their diagnostic protocol. If the biopsy demonstrates lymphoma rather than a head and neck cancer, then lymphoma staging is completed by the Haematology team. This means that although imaging is usually undertaken within 14 days of request, the actual time from

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initiation of staging until completion is extended due to the multi-step process and does not therefore meet the rigid QPI criteria

Action: Discussion of complex pathways required at National Meeting 18th November 2016. Lymphoma 2014-15 QPI 1 Radiological staging (i)

Lymphoma 2014-15 QPI 1 Radiological staging (ii)

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QPI 2 Treatment Response Patients with Diffuse Large B Cell Lymphoma (DLBCL) who are treated with curative intent should have their response to treatment evaluated with appropriate imaging Target 90% Numerator = Number of patients with DLBCL who are undergoing chemotherapy treatment with curative intent who undergo CT of chest, abdomen and pelvis at end of chemotherapy treatment. Denominator = All patients with DLBCL who are undergoing chemotherapy treatment with curative intent. Exclusions: Patients who died during treatment, primary DLBCL CNS, unfit for curative treatment Target 90% Borders Fife Lothian SCAN 2014-15 cohort 35 86 204 325 Ineligible for this QPI 15 56 156 227 Numerator 10 23 44 77 Not recorded for numerator 0 0 0 0 Denominator 10 27 48 85 Not recorded for exclusions 0 0 0 0 Not recorded for denominator 0 0 0 0 % Performance 100 85.2 91.7 90.6

Comments Fife: The target was not met showing a shortfall of 4.8% (4 cases). 3 patients had localised disease pre treatment and further imaging was not clinically indicated. 1 patient was not fit to travel for post treatment scan. Action: All cases were treated appropriately and no action is required.

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Lymphoma 2014-15 QPI 2 Treatment Response

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QPI 3 Positron Emission Tomography (PET CT) Staging

Patients with Classical Hodgkin Lymphoma should be evaluated with PET CT scanning to detect the extent of disease and guide treatment decision making.

Target 95%

Numerator I: Number of patients with CHL who undergo PET CT prior to treatment

Numerator II: Number of patients with CHL who undergo PET CT prior to treatment and within 2 weeks of radiology request

Denominator: All patients with CHL

Exclusions: Patients who refuse investigation, unfit for curative treatment

i) Prior to treatment Target 95% Borders Fife Lothian SCAN 2014 -15 cohort 35 86 204 325 Ineligible for this QPI 34 79 180 293 Numerator I 1 7 21 29 Not recorded for numerator 0 0 0 0 Denominator 1 7 24 32 Not recorded for exclusions 0 0 0 0 Not recorded for denominator 0 0 0 0 % Performance I 100 100 87.5 90.6

Lothian: The target was not met with a shortfall of 7.5% (3 cases). 2 were inpatients and were therefore not eligible for PET scans. 1 patient was considered too unwell to wait for a PET scan and proceeded to treatment immediately. ii) Prior to treatment and within 2 weeks of radiology request Target 95% Borders Fife Lothian SCAN 2014 -15 cohort 35 86 204 325 Ineligible for this QPI 34 79 180 293 Numerator II 1 5 15 21 Not recorded for numerator 0 0 0 0 Denominator 1 7 24 32 Not recorded for exclusions 0 0 0 0 Not recorded for denominator 0 0 0 0 % Performance II 100 71.4 62.5 65.6

Comments

Fife: The target was not met for part ii with a shortfall of 23.6% (2 cases). In both cases PET scans were completed within 15 days. Lothian: The target was not met with a shortfall of 32.5% (9 cases). 3 cases as outlined for part (i), 5 cases were within 20 days of request, 1 patient was too unwell to attend for scan. Action: All cases were treated appropriately and no action is required.

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Lymphoma 2014-15 QPI 3 Positron Emission Tomography (PET CT) Staging (i)

QPI 3 Positron Emission Tomography (PET CT) Staging (ii)

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QPI 4 Cytogenetic Testing

Patients with Burkitt lymphoma and Diffuse Large B cell Lymphoma (DLBCL) should have MYC testing as part of diagnostic process, to allow identification of those who may require central nervous system (CNS) prophylaxis and alternative treatment.

Target 80%

Numerator: Number of patients with Burkitt lymphoma and DLBCL who have MYC testing prior to treatment

Denominator: All patients with Burkitt lymphoma and DLBCL

Exclusions: Primary DLBCL of CNS

Target 80% Borders Fife Lothian SCAN 2014-15 cohort 35 86 204 325 Ineligible for this QPI 24 56 151 231 Numerator 11 8 33 52 Not recorded for numerator 0 0 0 0 Denominator 11 30 53 94 Not recorded for exclusions 0 0 0 0 Not recorded for denominator 0 0.0 0 0 % Performance 100 26.7 62.3 55.3

Comments Fife: The target was not met with a shortfall of 53.3% (22 cases). None of these cases had a MYC test performed. Lothian: The target was not met with a shortfall of 17.7% (20 cases). 13 cases had a MYC test but it was reported after treatment had started. 7 cases did not have a MYC test done. Of these, 2 of the patients were elderly frail patients where a positive MYC test would not have altered the clinical management. 2 cases diagnosed with Primary Mediastinal (Thymic) Large B-cell Lymphoma do not require to be MYC tested. 3 cases should have had MYC test done but did not. Action: Initiate system to ensure timely MYC testing is performed on appropriate patients in Fife and Lothian. SCAN comments for future QPI formal review (after year 3 results are available). Consider exclusion of patients where a positive MYC test would not alter management.

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Lymphoma 2014-15 QPI 4 Cytogenetic Testing

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QPI 5 Lymphoma MDT Patients with lymphoma should be discussed by a multidisciplinary team following diagnosis

Target 85%

Numerator - Number of patients with lymphoma discussed at the MDT within 6 weeks of diagnosis

Denominator - All patients with Lymphoma

Exclusions: Patients who died before first treatment, patients with primary cutaneous lymphoma

Target 85% Borders Fife Lothian SCAN 2014-15 cohort 35 86 204 325 Ineligible for this QPI 3 5 16 24 Numerator 25 68 147 240 Not recorded for numerator 0 0 0 0 Denominator 32 81 188 301 Not recorded for exclusions 0 0 0 0 Not recorded for denominator 0 0 0 0 % Performance 78.1 84.0 78.2 79.7

Comments

Borders: The target was not met by a shortfall of 6.9% (7 cases). 3 cases were elderly/frail patients with significant comorbidities which delayed full staging process required prior to review at MDM. 2 cases were incidental findings requiring immediate treatment before MDM. 2 cases were referred from another therapeutic area and require full staging before MDM.

Fife: The target was not met with a shortfall of 1% (13 cases). 12 cases were >42 days from diagnosis and 1 case was not discussed at MDM.

Lothian: The target was not met by a shortfall of 6.8% (41cases). In 37 cases, formal review was undertaken within the Haematology MDM but this review occurred more than 42 days from diagnosis. 4 cases were not reviewed within the Haematology specialist MDM. Of these 4 cases, 2 were discussed at specialist skin lymphoma MDM, another case was reviewed within Upper GI MDM and died so was not reviewed within the Haematology MDM. One case was registered but not formally discussed as they died prior to a formal diagnosis.

In 25 cases in SCAN the delay arose as a result of the complex nature of the Lymphoma diagnostic pathway as patients were referred via other specialties. It would be inappropriate to impact on those processes as the diagnoses are complex and varied.

Patients are only reviewed within the Haematology MDM when all of the necessary investigations and staging are complete. This is to ensure the formulation of an appropriate patient centred management plan.

The table below shows a break down of the specialities involved in the pathways of cases not meeting QPI 5.

Speciality Number of cases Breast 03 ENT 10 General surgery 10 Health Haematology 14

Action No action required.

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Lymphoma 2014-15 QPI 5 Lymphoma MDT

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QPI 6 Treatment for follicular Lymphoma and Diffuse Large B Cell Lymphoma Patients with symptomatic advanced FL and DLBCL should undergo treatment with Rituximab in combination with chemotherapy Target 95% Numerator - Number of patients with FL and DLBCL who receive Rituximab in combination with chemotherapy Denominator - All patients with FL and DLBCL who receive chemotherapy Exclusions : Refuse chemotherapy, enrolled in clinical trials. Target 95% Borders Fife Lothian SCAN 2014-15 cohort 35 86 204 325 Ineligible for this QPI 18 49 136 203 Numerator 17 37 67 121 Not recorded for numerator 0 0 0.0 0 Denominator 17 37 68 122 Not recorded for exclusions 0 0 0 0 Not recorded for denominator 0 0 0 0 % Performance 100 100.0 98.5 99.2

Comments This QPI was met by all Boards. No action required

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Lymphoma 2014-15 QPI 6 Treatment for follicular Lymphoma and Diffuse Large B Cell Lymphoma Graph .

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QPI 7 Treatment of Grade 3b Follicular Lymphoma

Target 95%

Numerator - number of patients with Grade 3b Follicular Lymphoma who receive R-CHOP chemotherapy

Denominator - All patients with grade 3b Follicular Lymphoma

Exclusions –refuse chemotherapy, died before treatment, patients enrolled in clinical trials

Target 95% Borders Fife Lothian SCAN 2014-15 cohort 35 N/A 204 239 Ineligible for this QPI 34 N/A 200 234 Numerator 1 N/A 4 5 Not recorded for numerator 0 N/A 0 0 Denominator 1 N/A 4 5 Not recorded for exclusions 0 N/A 0 0 Not recorded for denominator 0 N/A 0 0 % Performance 100 N/A 100 100

Comment This QPI was met by all Boards. NB There were no patients in this cohort for inclusion in QPI 7 in Fife. No Action required

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Lymphoma 2014-15 QPI 7 Treatment of Grade 3b Follicular Lymphoma

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QPI 8 Treatment of stage 1A DLBCL

Target 90%

Numerator - number of patients with nodal, non-bulky stage 1A DLBCL who receive local radiotherapy in combination with limited chemotherapy (3 cycles)

Denominator - All patients with nodal non bulky stage 1A disease

Exclusions : Patients who refuse treatment, have contraindications to local radiotherapy, enrolled in clinical trials or died before treatment.

Target 90% Borders Fife Lothian SCAN 2014-15 cohort 35 86 204 325 Ineligible for this QPI 34 82 202 317 Numerator 1 2 1 4 Not recorded for numerator 0 0 0 0 Denominator 1 4 2 7 Not recorded for exclusions 0 0 0 0 Not recorded for denominator 0 0 0 0 % Performance 100 50.0 50.0 57.1

Comments Fife: The target was not met by a shortfall of 50% (2 cases). These 2 patients had testicular lymphoma and were treated with 4 cycles of chemotherapy which is standard protocol for this disease. Lothian: The target was not met with a shortfall of 50% (1 case). This patient had 2 cycles of chemotherapy instead of 3. All cases were treated appropriately and no action is required.

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Lymphoma 2014-15 QPI 8 Treatment of stage 1A DLBCL

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QPI 9 Treatment of Classical Hodgkin Lymphoma (CHL)

Target – 80%

Numerator - Number of patients with stage 1a or 2a CHL who receive combined modality treatment (chemotherapy and radiotherapy).

Denominator - All patients with stage 1a or 2a CHL

Exclusions: patients who refuse treatment or die before treatment, patients with contraindications to radiotherapy, patients enrolled in clinical trials. Target 80% Borders Fife Lothian SCAN 2014-15 cohort 35 86 204 325 Ineligible for this QPI 35 85 200 320 Numerator 0 1 3 4 Not recorded for numerator 0 0 0 0 Denominator 0 1 4 5 Not recorded for exclusions 0 0 0 0 Not recorded for denominator 0 0 0 0 % Performance 0 100 75.0 80.0

Comment Lothian: The target was not met with a shortfall of 5% (1 case) This case was a young woman with a mediastinal mass who was PET negative at the end of treatment. The clinical decision after formal review was not to give combined modality treatment in order to limit long term toxicity. All cases were treated appropriately and no action is required.

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Lymphoma 2014-15 QPI 9 Treatment of Classical Hodgkin Lymphoma (CHL)

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QPI 10 Primary Cutaneous Lymphoma

Target 95%

Numerator – Number of patients with primary cutaneous lymphoma who are discussed at a specialist MDT meeting.

Denominator – All patients with primary cutaneous lymphoma

Exclusions: No exclusions

Target 95% Borders Fife Lothian SCAN 2014-15 cohort 35 86 204 325 Ineligible for this QPI 33 83 199 315 Numerator 2 3 5 10 Not recorded for numerator 0 0 0 0 Denominator 2 3 5 10 Not recorded for exclusions 0 0 0 0 Not recorded for denominator 0 0 0 0 % Performance 100 100 100 100

Comment This QPI was met by all Boards. Lymphoma 2014-15 QPI 10 Primary Cutaneous Lymphoma

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QPI 11 Hepatitis and HIV Status

Target – 100%

Numerator - Number of patients with lymphoma undergoing rituximab based treatment who have hepatitis B, C and HIV status checked prior to treatment.

Denominator – All patients with lymphoma undergoing Rituximab based treatment

Exclusions: No exclusions

Target 100% Borders Fife Lothian SCAN 2014-15 cohort 35 86 204 325 Ineligible for this QPI 15 34 118 167 Numerator 19 46 85 150 Not recorded for numerator 0 0 0 0 Denominator 20 52 86 158 Not recorded for exclusions 0 0 0 0 Not recorded for denominator 0 0 0 0 % Performance 95 88.5 98.8 94.9

Comment Borders: The target was not met with a shortfall of 5% (1 case). This patient did not have full virology testing completed before starting treatment with Rituximab. Fife : The target was not met with a shortfall of 11.5% (6 cases). These patients did not have full virology testing completed before starting treatment with Rituximab. Lothian: The target was not met with a shortfall of 1.2% (1 case). This patient did not have full virology testing before starting treatment with Rituximab. Action : All Health Boards need to ensure that virology testing is completed appropriately.

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Lymphoma 2014-15 QPI 11Hepatitis and HIV Status

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Clinical Trials QPI Proportion of patients with Lymphoma who are enrolled in an interventional clinical trial or translational research. Interventional Clinical Trials Target = 7.5% Translational Research Target = 15% Numerator 1 Number of patients with Lymphoma enrolled in an interventional clinical trial Numerator 2 Number of patients with Lymphoma enrolled in translational research. Denominator All patients with Lymphoma Average 5 year incidence from Cancer Registry (2010 – 2014) IR2016- 01311 Interventional Target 7.5% Borders Fife Lothian SCAN Numerator 0 0 1 1 Denominator 29 72 202 303

% Performance 0 0 0.49 0.33 Translational Target 15% Borders Fife Lothian SCAN Numerator 0 0 1 1 Denominator 29 72 202 303

% Performance 0 0 0.49 0.33

Interventional Trials in 2015 Numbers recruited

The two step study* 1

Translational Trials in 2015 Numbers recruited

The two step study* 1 *There were no clinical trials specific to lymphoma open in 2015.

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Appendix

Summary of patients in cohort Patients diagnosed with lymphoma in SCAN between 1s t October 2014 and 30th September

2015

Borders Fife Lothian SCAN

Hodgkin Lymphoma (HL) 3 9 28 40 Diffuse Large B cell Lymphoma (DLBCL) 11 34 56 101

Follicular Lymphoma (FL) 7 10 40 57

Other Lymphomas 14 33 80 127

Total of all Lymphomas 35 86 204 325

Breakdown of “Other” Lymphomas 2014-15 Breakdown of “Other” Lymphomas diagnosed 2013 Borde rs Fife Lothian SCAN Anaplastic Large Cell Lymphoma, (ALCL) ALK Negative

1 0 1 2 Angioimmunoblastic T cell 0 1 1 2 Burkitt’s Lymphoma 0 0 4 4 Enteropathy-associated T-cell Lymphoma 0 0 2 2 Extranodal Marginal Zone Lymphoma of MALT 4 0 9 13 Large B-cell Lymphoma Arising in HHV8-associated Multicentric Castleman Disease 0 0 1 1 Lymphomatoid Granulomatosis 0 1 0 1 Lymphoplasmacytic Lymphoma / WaldenstrÖm Macroglobulinaemia 6 2 26 34 *Malignant Lymphoma NHL, Not otherwise specified (NOS) 1 0 4 5 *Malignant Lymphoma, Not Otherwise Specified 0 6 0 6 Mantle Cell 0 8 7 15 Mycosis Funggoides 1 0 2 3 Nodal Marginal Zone 0 3 0 3 Nodular Lymphocyte Predominant Hodgkin Lymphoma 0 2 0 2 Peripheral T-Cell Lymphoma, Unspecified 0 3 6 9 Plasmablastic Lymphoma 0 0 2 2 Post Transplant LPD 0 1 7 8 Primary Cutaneous CD4 +ve/small medium T Cell 0 1 3 4 Primary Cutaneous Follicle Centre Lymphoma 0 2 0 2 Primary Mediastinal (Thymic) Large B Cell Lymphoma 0 0 2 2 Primary cutaneous Gamma-delta T-cell Lymphoma 1 0 0 1 Small Lymphocytic Lymphoma 0 1 0 1 Splenic B-cell Lymphoma/Leukaemia, Unclassifiable 0 0 1 1 Splenic B-Cell Marginal Zone Lymphoma 0 2 2 4

Total 14 33 80 127

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Lymphoma Performance Status at diagnosis by age gro up and board of diagnosis 2014-15

SCAN

<60 (n=89) 60-75 (n=142) >75 (n=94) Total (n=325)

n % n % n % n % PS 0 68 35.2 85 44.0 40 20.7 193 100 PS 1 11 19.6 26 46.4 19 33.9 56 100 PS 2 4 14.3 13 46.4 11 39.3 28 100 PS 3 3 16.7 5 27.8 10 55.6 18 100 PS 4 1 9.1 5 45.5 5 45.5 11 100 Not recorded/Missing Data 2 10.5 8 42.1 9 47.4 19 100

Borders

<60 (n=5) 60-75 (n=22) >75 (n=8) Total (n=35)

n % n % n % n % PS 0 4 19.0 15 7142.9 2 9.5 21 100 PS 1 1 11.1 5 55.6 3 33.3 9 100 PS 2 0 0.0 0 0.0 1 100.0 1 100 PS 3 0 0.0 1 50.0 1 50.0 2 100 PS 4 0 0.0 1 50.0 1 50.0 2 100 Not recorded/Missing Data 0 0 0 0 0 0 0 0

Fife

<60 (n=22) 60-75 (n=45) >75 (n=19) Total (n=86)

n % n % n % n % PS 0 16 30.8 26 50.0 10 19.2 52 100 PS 1 2 16.7 7 58.3 3 25.0 12 100 PS 2 1 10.0 7 70.0 2 20.0 10 100 PS 3 2 28.6 3 42.9 2 28.6 7 100 PS 4 0 0.0 0 0.0 1 100.0 1 100 Not recorded/Missing Data 1 25.0 2 50.0 1 100.0 4 100

Lothian

<60 (n=62) 60-75 (n=75) >75 (n=67) Total (n=204) n % n % n % n %

PS 0 48 40.0 44 36.7 28 23.3 120 100 PS 1 8 22.9 14 40.0 13 37.1 35 100 PS 2 3 17.6 6 35.3 8 47.1 17 100 PS 3 1 11.1 1 11.1 7 77.8 9 100 PS 4 1 12.5 4 50.0 3 37.5 8 100 Not recorded/Missing Data 1 6.7 6 40.0 8 53.3 15 100

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SCAN

<60 60-75 >75 Total n % n % n % n %

DLBCL 20 19.8 44 43.6 37 36.6 101 100 FL 20 35.1 23 40.4 14 24.6 57 100 HL 21 52.5 15 37.5 4 10.0 40 100 Other Lymphoma 28 22.0 61 48.0 38 29.9 127 100

Total 89 27.4 143 44.0 93 28.6 325 100

Borders

<60 60-75 >75 Total n % n % n % n %

DLBCL 1 9.1 8 72.7 2 18.2 11 100 FL 1 14.3 4 57.1 2 28.6 7 100 HL 1 33.3 2 66.7 0 0.0 3 100 Other Lymphoma 2 14.3 8 57.1 4 28.6 14 100

Total 5 14.3 22 62.9 8 22.9 35 100

Fife

<60 60-75 >75 Total n % n % n % n %

DLBCL 7 20.6 15 44.1 12 35.3 34 100 FL 3 30.0 6 60.0 1 10.0 10 100 HL 3 33.3 5 55.6 1 11.1 9 100 Other Lymphoma 9 27.3 20 60.6 4 12.1 33 100

Total 22 25.6 46 53.5 18 20.9 86 100

Lothian

<60 60-75 >75 Total n % n % n % n %

DLBCL 12 21.4% 21 37.5% 23 41.1 56 100 FL 16 40.0% 13 32.5% 11 27.5 40 100 HL 17 60.7% 8 28.6% 3 10.7 28 100 Other Lymphoma 17 21.3% 33 41.3% 30 37.5 80 100

Total 62 30.4% 75 36.8% 67 32.8 204 100

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Age and sex distribution Lymphoma patients diagnosed in SCAN 2014-15

Case Ascertainment Borders Fife Lothian SCAN

16-19 M 0 0 0 0

F 0 0 3 3

20-24 M 0 0 1 1

F 0 0 1 1

25-29 M 1 0 1 2

F 1 0 3 4

30-34 M 0 0 2 2

F 0 0 4 4

35-39 M 0 1 6 7

F 0 0 1 1

40-44 M 0 2 7 9

F 0 0 4 4

45-49 M 1 4 5 10

F 0 5 2 7

50-54

M 0 0 5 5

F 0 2 8 10

55-59

M 1 4 7 12

F 1 4 2 7

60-64

M 7 5 11 23

F 2 4 7 13

65-69

M 2 10 11 23

F 2 6 8 16

70-74

M 4 7 25 36

F 4 11 10 25

75-79

M 3 7 19 39

F 1 5 14 20

80-84

M 0 3 12 15

F 2 5 10 17

85+

M 1 0 4 5

F 2 1 11 14

Total

M 20 43 116 179

F 15 43 88 146

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GLOSSARY of Terms Audit The measuring and evaluation of care against best practice with a view to

improving current practice and care delivery. BGH Borders General Hospital Cancer The name given to a group of diseases that can occur in any organ of the

body, and in blood, and which involve abnormal uncontrolled growth of cells. Case ascertainment

Number of cases recorded as a proportion of those expected using the average of the most recent available five years reported in the Scottish Cancer Registry

Clinical Governance Ensures that patients receive the highest quality of care possible, putting each patient at the centre of his or her care. This is achieved by making certain that those providing services work in an environment that supports them and places the safety and quality of care at the top of the organisation's agenda.

Dataset A list of required and specific information relating to a single disease DLBCL Diffuse Large B Cell Lymphoma HL Hodgkin’s Lymphoma FL Follicualr Lymphoma Other Lymphomas Any lymphoma which does not fall into any of the above categories. Fife Queen Margaret Hospital, Dunfermline and Victoria Hospital, Kirkcaldy GRO Records General Register Office Records provide official government information on

births, marriages and deaths Hepatitis B Surface Hepatitis B surface antigen (HBsAg) is a protein antigen produced by HBV

(Hepatitis B Virus). This antigen is the earliest indicator of acute hepatitis B and frequently identifies infected people before symptoms appear. In some people (particularly those infected as children or those with a weak immune system, such as those with AIDS), chronic infection with HBV occurs

Hepatitis B Core Anti-hepatitis B core antigen (anti-HBc) is an antibody to the hepatitis B core antigen. The core antigen is found on virus particles but disappears early in the course of infection. This antibody is produced during and after an acute HBV (Hepatitis B Virus) infection and is usually found in chronic HBV carriers as well as those who have cleared the virus, and usually persists for life

Hepatitis C Hepatitis C is an infection of the liver caused by the hepatitis C virus HIV Human immunodeficiency virus (HIV) attacks the body's immune system. A

healthy immune system provides a natural defence against disease and infection. If the immune system is damaged by HIV, it increases the risk of developing a serious infection or disease, such as cancer.

Multidisciplinary team Meeting (MDM)

A multiprofessional group of people from different disciplines (both healthcare and non-healthcare) who work together to provide care for patients with a particular condition. Within the South East Scotland Cancer Network (SCAN) a weekly Haematological cancer regional multidisciplinary team meeting is held at the Western General Hospital, Edinburgh with video links to BGH, SJH, QMH, VHK where patients from the Lothian (including West Lothian), Borders and Fife areas are discussed.

NR Not Recorded

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Outcome A measure of the effects, beneficial or adverse, which a person experiences as a result of the care, treatments or services they have received.

Performance Status An overall assessment of the functional/physical performance of the patient PS 0 Fully active. Able to carry on all pre-disease performance without restriction PS 1 Restricted in physically strenuous activities but ambulatory and able to carry

out work of a light and sedentary nature PS 2 Ambulatory and capable of self-care but unable to carry out many work

activities; up and about more than 50% of waking hours PS 3 Capable of only limited self-care; confined to bed or chair for more than 50%

of waking hours PS 4 Completely disabled; unable to carry out any self-care; totally confined to bed

or a chair Quality assurance (QA)

When a sample of data is compared with the data definitions

SCAN South East Scotland Cancer Network

SJH St John’s Hospital, Livingston QMH Queen Margaret Hospital, Dunfermline VHK Victoria Hospital, Kirkcaldy WGH Western General Hospital, Edinburgh Stage The extent to which cancer has spread from its original site to other parts of

the body. Usually denoted by a number from Stage 1 (least severe) to Stage 4 (more advanced).


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