Annual Report Paediatrics Haematology MDT

Transcription

1 Annual Report Paediatrics Haematology MDT University Hospitals Bristol NHS Foundation Trust Minicom

2 Agreement and Approval Paediatrics Haematology MDT Lead John Moppett Date 20/09/2012 Signature (agreed via ) Review Date Next annual report due: 01/07/13 Versions Version Date Reason Sign Off /05/10 Draft revision for 2010 Peer Review /07/11 Draft revision for 2011 Peer Review 3.0 July report produced 20/09/ Annual Report Paediatrics Haematology MDT

3 1 Measure Checklist Measure Number Measure Operational Policy 11-7B-301 Lead Clinician and Core Team Membership p8-9, B-302 Treatment planning meeting p12,15, B-303 Cover arrangements for core members p8-9 Annual Report 11-7B-304 Core members attendance p6-7 Work Plan Supporting Information 11-7B-305 Operational policy meeting p16 p B-306 Policy for patients to be discussed by the MDT p12, B-307 Informing GP of the diagnosis p17 p12 p7 11-7B-308 Key worker policy p20 p12 p7 11-7B B B-312 EQA membership of histopathology core members Attendance at the national communications skills training Specialist training for core nurse member 11-7B-313 Agreed Responsibilities for Core Nurse Members p12 p B-314 Patients' permanent consultation record p18 p7 11-7B-315 Patients experience exercise p13 p6 p B-316 Provision of patient written information p B-317 Treatment planning decision p16 p B-318 PTC initial referral protocol p B-319 PTC diagnosis and staging protocol p B-320 PTC clinical management protocols p B-321 PTC follow up and long term sequelae protocol p B-322 PTC psychosocial assessment guidelines p B-323 Minimum dataset p22 p B-324 Clinical trials entry p14-18 p B-325 Joint treatment planning for TYAs p16 p9 p10 p5 p6 Annual Report Paediatrics Haematology MDT 3

4 2 Contents 1 Measure Checklist Contents Introduction Key Achievements Key Challenges MDT Structure and staffing Meeting Details Core MDT Role Meeting Attendance (11-7B-304) Diagnostic MDT Treatment MDT Core MDT Individual Meeting Attendance Diagnostic MDT Treatment MDT MDT Workload Registration by diagnosis Registration by shared care centre Relapses Deaths TYA patients (11-7B-325) Meetings to Discuss Operational Policies Training EQA Scheme Advanced Communication Skills Training (11-7B-311) Data Collection (11-7B-323) National / Local Audit Network Audit National Audit Local Audit Audit of Timeliness of Diagnostic Notification to GPs (11-7B-307) Audit of Keyworker Provision (11-7B-308) Publications Patient and Carer Feedback and Involvement (11-7B-315) Research Clinical Trials (11-7B-324) UKALL UKALL R Interfant Serious Adverse Events (SAEs) Annual Report Paediatrics Haematology MDT

5 3 Introduction This report relates to the review period 1 st April st March Key Achievements Positive peer review visit in November 2011 Good communication with POSCUs First centre to open UKALL2011 trial in April 2012 Completed GP and keyworker audits 3.2 Key Challenges Trial recruitment has been significantly affected during the review period by the closure of UKALL2003 on 30 th June 2011 and the delay in opening UKALL2011 until 26 th April Thus for 9 months there was no clinical trial available for the vast majority of newly diagnosed patients. Bristol was the first centre open for UKALL2011 in the UK in 2012 and we expect to see a significant pick-up in trial recruitment next year. 3.3 MDT Structure and staffing IOG MDT membership requirements are not met as these do not fit the purpose of MDTs for malignant haematological diagnosis and treatment. The external peer reviewers agreed that the model at UH Bristol was acceptable even though it does not meet the letter of the measures. Their report stated; the review team was confident that patients were not disadvantaged in any way by this arrangement, due to the fact that there are a number of meetings in place to coordinate the management of care for children and young people with cancer The MDT reviewed the structure and function of the two MDT meetings at the operational review meetings. It was agreed that they should continue in their present format. Diagnostic MDT The diagnostic MDT meets monthly and involves clinicians from UHBristol and laboratory staff from North Bristol Trust. On Treatment MDT The on treatment MDT meets weekly and performs the other functions of the MDT, i.e. the integration of patient treatment into the multidisciplinary team around them. Key workers are allocated and all significant treatment-related issues are discussed. We continue to provide training in paediatric haematology to two haematology specialist trainees at any one time, together with paediatric oncology trainees and occasional haematology trainees from the peninsula rotation. The haematology MDT is well represented on national bodies, with members part of the Leukaemia working party, NCRI children s leukaemia CSG subgroup and UKALL2011 trial co-ordinators. Special thanks must be given to Mr Jamie Cargill who has moved on from the Leukaemia CNS role to take on other challenges in nursing education. He finished in April 2012, and has been replaced by Ms Marie O Donnovan who will commence her duties in July Annual Report Paediatrics Haematology MDT 5

6 4 Meeting Details The Specialist Haematology Diagnostic and Treatment MDT regularly record attendance A full breakdown of MDT meeting attendance for core MDT members for period April 2011 to March 2012 is as follows. 4.1 Core MDT Role Meeting Attendance (11-7B-304) Diagnostic MDT Role Combined Attendance (%) MDT Clinical Lead 63% Paediatric Oncologists 88% Clinical Oncologists Histopathologist 63% Immunologist 100% Cytogeneticist 86% Specialist Nurse, Leukaemia 63% Specialist Nurse, Outreach Nurse, Oncology Ward Nurse, Cancer day care facility Oncology Pharmacist MDT co-ordinator and secretary 75% Treatment MDT 0% (not expected to attend) 0% (not expected to attend) 0% (not expected to attend) 0% (not expected to attend) 0% (not expected to attend) Role Combined Attendance (%) MDT Clinical Lead 68% Paediatric Oncologists 100% Clinical Oncologists Histopathologist Immunologist Cytogeneticist Specialist Nurse, Leukaemia 46% Specialist Nurse, Outreach 44% Nurse, Oncology Ward 76% Nurse, Cancer day care facility 0% Oncology Pharmacist MDT co-ordinator and secretary 52% 0% (not expected to attend) 0% (not expected to attend) 0% (not expected to attend) 0% (not expected to attend) 13% (attends separate chemo planning meeting instead of regular MDT) 6 Annual Report Paediatrics Haematology MDT

7 4.2 Core MDT Individual Meeting Attendance Diagnostic MDT Members with * have subsequently left the MDT Name Job Title % attendance 11/12 John Moppett Paediatric Oncologist 63% Michelle Cummins Paediatric Oncologist 63% Oliver Tunstall Paediatric Oncologist 63% Pramila Ramani Histopathologist 63% Paul Virgo Immunologist 100% Mike Nobbs Cytogeneticist 38% Jerry Hancock Cytogeneticist 60% Jamie Cargill* Specialist Nurse 63% Sheila Fox Nurse, Oncology Ward N/A Caroline Roberts* Nurse, Oncology Ward N/A Caroline Lyons Paediatric Oncology Nurse Outreach Specialists N/A Ken Hull Paediatric Oncology Nurse Outreach Specialists N/A Jenny Haylor Oncology Pharmacist N/A Verity Thorne MDT Coordinator 75% Treatment MDT Name Job Title % attendance 11/12 John Moppett Paediatric Oncologist 68% Michelle Cummins Paediatric Oncologist 80% Oliver Tunstall Paediatric Oncologist 82% Pramila Ramani Histopathologist N/A Paul Virgo Immunologist N/A Mike Nobbs Cytogeneticist N/A Jerry Hancock Cytogeneticist N/A Jamie Cargill* Specialist Nurse 74% Sheila Fox Nurse, Oncology Ward 59% Caroline Roberts* Nurse, Oncology Ward 13% Clare Daly Paediatric Oncology Nurse Outreach Specialists 55% Ken Hull Paediatric Oncology Nurse Outreach Specialists 46% Jenny Haylor Oncology Pharmacist 13% Verity Thorne MDT Coordinator 52% Annual Report Paediatrics Haematology MDT 7

8 4.3 MDT Workload 29 patients with de novo haematological malignancies were registered in Bristol from 01/04/ /03/ Registration by diagnosis Paediatric leukaemia diagnoses in the South West 2011/12 n = 29 ALL AML TMD/ML-DS APL Disease No. Patients registered De novo ALL 21 De novo AML 2 Secondary AML 1 APML 2 Myeloid disorder/aml of Down syndrome Biphenotypic leukaemia CML 0 JMML 0 Total Registration by shared care centre 12 Yeovil 0 10 Truro Taunton 3 Bath 2 2 Plymouth 1 0 Yeovil Truro Taunton Bath Plymouth Gloucester Exeter Bristol Outside area Gloucester 4 Exeter 10 Bristol 6 Outside area 1 Total 29 8 Annual Report Paediatrics Haematology MDT

9 4.3.3 Relapses There were three leukaemia relapses during Two had ALL, one of whom entered the R3 trial for relapsed ALL. The other relapsed after bone marrow transplant for primary refractory ALL. Another child relapsed following transplant for secondary AML Deaths There were three deaths in leukaemia patients, two following relapse post-transplant and one outside referral refractory to CLOUD therapy (registered ). There were no treatment related deaths. 4.4 TYA patients (11-7B-325) Three patients diagnosed in the time period were in the TYA age range. These were referred to the TYA MDaT for joint treatment planning. 4.5 Meetings to Discuss Operational Policies Both the Haematology Diagnostic and the On-treatment MDTs hold annual meetings which review the service, along with policies and procedures in force across the MDT service. Minutes of the most recent meetings can be found in the supporting information on pages 4-5. Annual Report Paediatrics Haematology MDT 9

10 5 Training 5.1 EQA Scheme The MDT pathologist, Pramila Ramani participates in the paediatric histopathology EQA scheme, a copy of her certificate is available in the supporting information on page Advanced Communication Skills Training (11-7B-311) It is the intention for all members to receive training in this regard, and many have made attempts to do so but there is a national shortage of places available. At this point only some members of the team have attended this training. This is an active item in the MDT work plan to complete as places on the training scheme become available. Medical Name Advanced Communication course John Moppett 27 th -29 th September 2011 Michelle Cummins Oliver Tunstall Awaiting further courses Awaiting further courses Balveer Kaur th October 2011 Nursing Name Role Advanced Communication course Clare Daly POONS Awaiting further courses Ken Hull POONS th October 2011 Sheila Fox Day case nurse representative Awaiting further courses Caroline Roberts Day case nurse representative Awaiting further courses 10 Annual Report Paediatrics Haematology MDT

11 6 Data Collection (11-7B-323) Data is collected using the Somerset Cancer Register. An audit of data showed the following completeness (for all paediatrics patients, not just haematology): Tumour status: 100% MDT date: 91% Treatment start date: 100% CNS contact date: 21% Basis of diagnosis: 51% Diagnosis code: 99% Diagnosis date: 100% The Trust is working towards improving data collection and the informatics department are supporting this by developing reports to monitor completeness of clinical data on the register. Annual Report Paediatrics Haematology MDT 11

12 7 National / Local Audit 7.1 Network Audit No Network audit has yet been agreed. 7.2 National Audit Dr Wasswa (SpR Haematology) took part in the National Platelet Transfusion audit, supervised by Dr Moppett. Results are available on the following site: These confirm good local compliance with inpatient transfusion; more work could be done to prevent platelet wastage in the prophylactic transfusion setting. 7.3 Local Audit A mortality and Morbidity Review was presented to the department by Drs Moppett and Cummins on 10th June This reviewed all deaths, significant events and SAEs. We agreed to continue our risk modified fungal prophylaxis for induction in ALL. Antifungal prophylaxis in general remains under review. Our enhanced oral and perineal mucosal screening protocol is in use and will be reviewed in due course. An audit of fungal infections is ongoing, led by G Dobrovolski. An audit of line choice is also ongoing, led by N O Leary. 7.4 Audit of Timeliness of Diagnostic Notification to GPs (11-7B-307) Ten sets of notes of patients diagnosed in the audit period were chosen at random and audited to see if the GP was notified within 24 hours of the patient being given their diagnosis. 60% GPs were notified within 24 hours. The remaining 40% may have been notified by telephone but this not recorded in the notes. Action: Ensure GP notification policy is followed and all notifications are recorded in the notes 7.5 Audit of Keyworker Provision (11-7B-308) Ten sets of notes of patients diagnosed in the audit period were chosen at random and audited to see if the name and contact details of a keyworker were clearly recorded therein. 80% notes had this information recorded. Action: Ensure keyworker and contact details are recorded within the paper notes for all patients as well as on the cancer register 7.6 Publications The granulocytes in neutropenia 1 (GIN 1) study: a safety study of granulocytes collected from whole blood and stored in additive solution and plasma. Massey E, Harding K, Kahan BC, Llewelyn C, Wynn R, Moppett J, Robinson SP, Green A, Lucas G, Sadani D, Liakopoulou E, Bolton-Maggs P, Marks DI, Stanworth S. Transfus Med May 16. doi: /j x. [Epub ahead of print] Improved survival in matched unrelated donor transplant for childhood ALL since the introduction of highresolution matching at HLA class I and II. Harvey J, Green A, Cornish J, Steward C, Cummins M, Keen L, Culliford S, Poles A, Hunt L, Breslin P, Li Y, Moppett J. Bone Marrow Transplant Feb 20. doi: /bmt [Epub ahead of print] 12 Annual Report Paediatrics Haematology MDT

13 8 Patient and Carer Feedback and Involvement (11-7B-315) The MDT, as part of the BHRC Oncology service is undertaking a prospective exercise to ascertain the views of both patients (where possible and appropriate) and carers that use the service. The survey is made available to service users on paper, and the option is provided for the survey to be completed online if preferred. Results are collected annually and actions identified. For full results and the questionnaire please see the Supporting Information pages Following last year s survey the following actions were identified and undertaken. Issue Action required Lead Timescale Update Keyworker role needs further clarity Day to day care Facilities ward 35 MSc project being undertaken looking into families requirements, assignation process and education Issues raised discussed with ward team and psychologist developing ways of further supporting nurses Kitchen area being reviewed Other issues being addressed in new build Nutrition Food issues raised being discussed at food group Use of nasogastric tubes/peg Discharge process Further review of medical discharge summaries Ken Hull/Helen Morris Claire Harrison Sarah Johnson June 12 Ongoing Sarah Johnson Ongoing Chillout zone now completed Helen Morris Zoe Hull Consultants Ongoing Ongoing Annual Report Paediatrics Haematology MDT 13

14 9 Research 9.1 Clinical Trials (11-7B-324) Malignant Haematology MDT clinical trials Disease Trial Dates Phase 3 Acute Lymphoblastic Leukaemia (ALL) UKALL 2003 UKALL Infant Leukaemia Interfant Ph+ ALL EsPhALL Relapsed ALL R Acute Myeloid Leukaemia Phase 1/2 AML17 CLOUD Imatinib resistant CML CAMN107A2120 (Nilotinib) patients were recruited to UKALL2003 prior to closure. ALL2011 did not open during this reporting period. No clinical trial has been available for AML since July 2011 when the AML randomisation was changed to one that was unacceptable to the paediatric community. Patients with ALL and AML were therefore treated according to interim guidance produced by the leukaemia subgroup of the NCRI children s CSG, as documented in the Haematology Policy. As can be seen from the table below, only 5 patients were recruited to clinical trials (15%) entirely due to non-availability of trials (100% of eligible patients were entered into trials). This is an historically low figure for leukaemia trials recruitment. The opening of UKALl2011 on 26 th April 2012 will significantly improve trial recruitment. However, the non-availability of trials nationally for any form of AML remains of concern. 14 Annual Report Paediatrics Haematology MDT

15 Trial Recruitment Disease Trial Total Patients Patients Registere d on Trial De novo ALL Total UKALL Interfant EsPhALL Patients not register ed Comments Interim Guidance Not a trial Relapsed ALL Total post-bmt relapse no eligible trial R AML Total De novo AML APML AML of Down Syndrome TMD (Relapse/refracto ry AML) * Biphenotypic leukaemia CML JMML Interim Guidelines No applicable trial No applicable trial No applicable trial No applicable trial No applicable trial No applicable trial No applicable trial No open trial during this period Treated according ICC-APL Treated according to MD-DS Total to Annual Report Paediatrics Haematology MDT 15

16 9.1.1 UKALL patients were registered to this trial, 100% of eligible patients prior to trial closure, but only 19% of cases for the year. There were 21 new diagnoses in total - registrations by centre are shown below. 8 ALL diagnoses by South West POSCU n = 21 UKALL2003 Guidelines n = 17 UKALL2003 trial n = Outside SW Bath Bristol Exeter Gloucester Plymouth Taunton Truro. UKALL2003 trial registrations UKALL2003 final accrual by POSCU n = Barnstaple Bath Bristol Exeter Gloucester Kent Plymouth R Marsden Swindon Taunton Truro Yeovil UKALL2003 trial registrations, entire trial 16 Annual Report Paediatrics Haematology MDT

17 Deaths on UKALL2003 There have been 15 deaths of patients on the trial to date for patients registered in our region, as shown in figure 5. Six of these were toxic deaths (3 in children with Down syndrome none since the Down specific modifications to the trial), seven secondary to on-treatment relapse of disease and one secondary to off-treatment relapse. Cause is unknown in one as the patient moved out of region. The death in 2012 was secondary to relapse post-transplant. 5 UKALL2003 patient deaths by calendar year (n = 15) Overall, the picture that we see in the region for UKALL2003 in terms of SAEs and deaths mirrors the picture seen nationally, and we do not seem to be outlying in any particular area UKALL R3 There was 1 patient registered on the trial during the year. He had suffered on treatment bone marrow relapse (high risk according to the trial) and is currently on treatment Interfant No patients eligible for this trial in AML There was no trial open for primary AML during the majority of Six patients were registered with the PTC with AML, two with primary AML. However, one was congenital AML-M5, initally presenting with isolated cutaneous AML, and the other with congenital AML-M6, neither of whom would have been eligible for upfront trials even if open. Both have completed treatment and are currently alive in remission. Two patients with APML were treated according to National Standard of care ICC APL-01 which has not been adopted as a portfolio trial by CRCTU. Annual Report Paediatrics Haematology MDT 17

18 Two children with Down s syndrome was treated according to the national standard of care protocol, MDDS-2007, which has not been adopted as a portfolio trial by the CRCTU. One child with Transient Myeloid disorder of Downs (TMD) required chemotherapy which was delivered according to published papers. Severe Aplastic Anaemia The haematology MDT holds responsibility for these patients. There was one case diagnosed in They received BMT as 1 st line therapy. Other rare disorders None diagnosed. Serious Adverse Events (SAEs) There were 10 SAEs reported in the region in , all of them on UKALL2003. They are shown by location of report generation below. Notable themes include: - 4 fractures and 1 AVN 3 serious infections (enterovirus encephalitis, shingles and CMV cystitis) 1 episode of severe pancreatitis 1 SVT In comparison to , there has been no significant fungal toxicity which may be due to improved environmental conditions and/or better prophylaxis. 6 Serious Adverse Events for UKALL2003 patients 2011/12 by POSCU creating report Events n = 10, Patients n = Bristol Exeter Gloucester Yeovil 18 Annual Report Paediatrics Haematology MDT