myeloma network mdt operational policy -...

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Myeloma Network MDT

Operational Policy

_____________________________________________________________________________________

Working with hospitals across the Thames Valley Cancer Network

Updated: July 2013

QUALITY MEASURE STANDARD NO: 13-2H 103

Clinical Haematology - Myeloma

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CONTENTS Myeloma 3 + Appendix 1

Haemato-oncology MDT Measures 4

Key Theme: Structure and Function 4

Core Membership 4

MDT Review 6 + Appendix 2

Key Theme: Co-ordination of Care / Patient Pathways 7

Laboratory Investigational Guidelines 7 + Appendix 3

Clinical Guidelines for plasma cell dyscrasias 7 + Appendix 4

Clinical Diagnostic Pathway 7 + Appendix 5

Patient Pathways 7 + Appendix 5

Treatment Planning 7 + Appendix 6

Key Theme: Patient Experience 8

Key Worker 8

Patient Information 9 + Appendix 7

Permanent Record of Consultation 12 + Appendix 2

Appendices:

1. Contacts 13

2. GP Notification & Check list 14

3. Laboratory Investigational Guidelines 15

4. Clinical Guidelines for plasma cell dyscrasias 18

5. Clinical Diagnostic Pathway & Patient pathways 19

6. Treatment Planning - Myeloma MDT Referral Proforma 20

7. Core members who have attended Advanced Communication Skills Course 25



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MYELOMA The Myeloma Service provides diagnosis, treatment and care for patients with plasma cell dyscrasias. The service is Network-wide providing care for a population of 2.2m. There is a fortnightly Myeloma MDT meeting held on Thursdays between 11.00 and 13.00 hrs in Meeting Rooms 1/2 on Level 2, Cancer Centre at the Churchill Hospital, Oxford. Dr Karthik Ramasamy is the single named lead clinician for the MDT (Appendix 1) and Dr Robin Aitchison (Consultant Haematologist, Bucks healthcare is the Vice Chair. The Myeloma MDT consists of consultants from a range of specialties including haematology, oncology (radiotherapy), radiology and pathology (including molecular diagnostics). These consultants, with the support of clinical nurse specialists and the wider team, deliver a service that includes the diagnosis, management of all new and relapsed patients and agreed follow up of patients with Myeloma and allied plasma cell dyscrasias. An attendance register for each meeting will be kept. The aim of the Myeloma Network MDT is to ensure that the team works effectively and efficiently to provide high quality and individual treatment for all patients with plasma cell dyscrasias. Treatment will be based on the evidenced based guidelines and protocols that are reviewed and updated at the regular Myeloma away days and Haematology TSSG meetings. These protocols and guidelines are available on the Haematology TSSG website at: http://clsmac70.ndcls.ox.ac.uk/tssg-haematology/Myeloma/Myeloma.html. Changes to the protocols can be brought to the attention of the MDT at any stage. All protocols require approval by the NSSG. Currently, we video conference with Stoke Mandeville, Wycombe General Hospital, Milton Keynes General Hospital, Royal Berkshire Hospital and Great Western Hospital, Swindon.

There are local MDTs in operation in some of the participating DGHs, where some of these patients may have been discussed. We recommend that hospitals forward the proformas to the MDT coordinator for registration. These cases will be added to the Network MDT list for noting. The objective is to get a true population based incidence of these disorders in the Thames Valley to better plan servics. This would help in auditing, estimating clinical outcomes and developing/ reshaping the regional MDT service Clinic Timetable

Day Time Location Clinicians

Tuesday (Joint lymphoma and myeloma f/u clinic

09.00- 12.30

OPD Churchill Hospital

Dr Chris Hatton, Dr Graham Collins Lymphoma SpR, Pamela Roberts (ANP Myeloma)

Wednesday Myeloma f/u clinic

02.00 – 5.00pm


Dr Karthik Ramasamy, Dr Andy Peniket, Myeloma fellow, Haematology SpR and Pamela Roberts (ANP Myeloma)

Friday New patient Myeloma clinic / High dose therapy/ Trials clinic

1.00 – 4.00pm


Dr Karthik Ramasamy, Myeloma fellow, Pamela Roberts (SNP), Sarah Luther ( Myeloma Research nurse)



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Haemato-oncology MDT Measures

Key Theme: Structure and Function

Core Membership 1

MYELOMA NETWORK MDT CORE MEMBERSHIP Core Member Title Cover

Dr Karthik Ramasamy (MDT Chair and Lead Clinician); responsible for ensuring that service improvement is integrated into the functions of the MDT

Haemato-Oncologist Dr Robin Aitchison

Dr Robin Aitchison ( Vice chair)

Haemato - Oncologist Dr Karthik Ramasamy

Dr Andy Peniket Haemato-Oncologist Dr Karthik Ramasamy Dr Shiroma de Silva-Minor Clinical Oncologist Dr David Cutter Professor Kevin Gatter Haemato-Pathologist Prof Francesco Pezzella & Dr Elizabeth Soilleux Prof Francesco Pezzella Haemato-Pathologist Prof Kevin Gatter & Dr Elizabeth Soilleux Dr Elizabeth Soilleux Haemato-Pathologist Prof Kevin Gatter & Prof Francesco Pezzella Dr Niall Moore Radiologist Dr Richard Hughes Dr Richard Hughes Radiologist Dr Niall Moore Pamela Roberts The named level 2 psychological support practitioner for the MDT who has undergone advanced communication training and receives clinical supervision from a level 3-4 practitioner.

Advanced Nurse Practitioner

Under normal circumstances no cover provided for MDT meetings. Service requirements: Level I interventions will be provided by an identified peer ANP. Level 2-4 covered by the medical team2

Sarah Luther Research nurse Under normal circumstances no cover provided Emma Bakpa MDT Co-ordinator Cover required, and this will be arranged by the

MDT co-ordinator team leader, Nicole Langridge

MYELOMA NETWORK DGH LEAD CLINICIANS Core Member Title

(Haemato-Oncologist) Cover

Dr Denise White Milton Keynes Dr Dungarwalla, Dr Mitra Dr Robin Aitchison High Wycombe General

Hospital Dr Jonathan Pattinson

Dr Helen Eagleton Stoke Mandeville Hospital Dr Anne-Marie O’Hea Dr Simon Moule Wexham Park Hospital Dr Nicola Bienz Dr Sarah Green Great Western Hospital,

Swindon Dr Nobert Blesing

1 Quality Measure Standard 13-2H-101 2 MacMillan Levels of Intervention for ANPs



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MYELOMA NETWORK EXTENDED MDT MEMBERSHIP Extended Member Title

Clinical member of the transplant team(s) (Levels lll and lV) to which the MDT refers patients; acting as referral contact

Dr Andy Peniket

Pharmacist Cancer Pharmacists rotation team Specialist in insertion of semi-permanent aids to vascular access

Line Insertion Team

Dietitian Ruth Sargent Liaison psychiatrist and/or clinical psychologist Helen Palmer and/or Claire Marriott Social Worker OUH Social Work Department Bereavement counselor OUH Bereavement Service Palliative care specialist (Dr or Nurse) OUH Palliative Care Team Tissue bank coordinator Maite Cabes

Role of the MDT Chair

The role of MDT Chair is pivotal in ensuring that patients using the service are treated quickly and to a high standard. The role involves monitoring and delivering performance according to national and local targets, and ensuring that evolving requirements for the service are identified and put in place. The chair should:-

1. Ensure effective multidisciplinary team working. 2. Enable that decision-making is underpinned by evidence-based guidelines wherever possible 3. Ensure that all patients are considered for entry into clinical trials 4. Ensure that all new patients with plasma cell dyscrasias are reviewed in a timely manner 5. Ensure that each patient discussed has a clear treatment plan. 6. To support Network Hospitals through videoconferencing 7. Ensure that the outcomes of the meeting are clearly recorded and clinically validated and that

appropriate data collection is supported. 8. Ensure target of communicating MDT outcomes to primary care is met. 9. Ensure that the meeting runs to time.

Cancer Waiting Times

The Chair will monitor the MDT’s overall performance against cancer waiting times targets; promote awareness within the MDT of current performance and identify work streams for improvements. This should include:

1. A fortnightly review of the cancer PTL (Patient Targeted List), including breach analysis, with the

MDT Co-ordinator, Patient Access Manager and ANP. 2. Annually review the patient pathway. 3. Inform the MDT of any constraints/ bottlenecks along the patient pathway so improvements can

be made. 4. Attend the cancer performance meetings as required.

Peer Review

1. Ensure that objectives of MDT working (as laid out in Manual of Cancer Services) are met, with

overall responsibility for ensuring that the MDT meeting and team achieve peer review quality measures.

2. Write an MDT annual report including information on the structure and functioning of the MDT and service, information on cancer waiting times, co-ordination of care pathways and patient experience, reporting clinical indicators and outcomes.



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Service Planning

1. Link with cancer services Lead Clinician and with colleagues in the Thames Valley Cancer

Network through membership of the TSSG. 2. Undertake annual review of resources along the patient pathway to ensure the necessary

infrastructure is in place. This piece of work should be carried out with the Operational Services Manager.

3. Lead on, or nominate a lead for service improvement and agree an annual work programme. 4. Organise and chair annual meeting examining functioning of team and reviewing operational

policies and collate any activities that are required to ensure optimal functioning of the team (e.g. training for team members).

5. Ensure the MDT's activities are audited and results documented and acted upon. 6. Organising annual visits to referring units to discuss patient flows and outcomes. MDT Review 3 Patients discussed at the MDT meeting Agreed indications for, and frequency of re-referral of patients’ cases to the Myeloma MDT:

1. All new patients with a diagnosis of Myeloma/ Plasmacytoma/ AL Amyloidosis 2. Consideration for radiotherapy & vertebroplasty 3. Interim review following induction chemotherapy (Consultant discretion) 4. Decision to discontinue therapy (Consultant discretion) 5. Patients at relapse 6. Patients for consideration of high dose therapy and bone marrow transplantation 7. Any patient on whom a consultant requests MDT advice to plan further management 8. Results of patients’ holistic needs assessment should be taken into account in decision making

New Patient Identification and Tracking

Referrals

• Two Week Wait • GP • Inter departmental • Tertiary – for consideration of high dose therapy and transplantation • Management of MGUS – letter sent to GP’s for patients with MGUS containing

guidance on Management of paraproteinaemias in the community • All cases will be discussed along with appropriate pathology and radiological staff at

the fortnightly MDT Referring Urgent Patients Where patients need a treatment plan decision before the next scheduled MDT the referring clinician should: • Contact a clinician from the core team (telephone/letter) • Fax a written referral clearly indicating the doctors name and that it is an ‘urgent case’ as well as

including diagnostic information to: 3 Quality Measure Standard 13-2H-103



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o Secretary for Myeloma (Chris Capel) on 01865 235882 • Add the patient to the MDT list for the next meeting by using the MDT referral form Informing GPs of a Diagnosis of Cancer The following procedure should be carried out when a patient has been given a diagnosis of cancer: • The Consultant/Doctor/ANP/SNP should complete the GP notification sheet (Appendix 2)

located on the TSSG Haematology website: http://clsmac70.ndcls.ox.ac.uk/tssg-haematology/Myeloma/Myeloma.html

• Return to the Secretaries office on level 2 and leave in the allocated marked tray • The tray will be emptied once a day and notifications faxed to GP’s • The notifications will be filed in the patient notes • A copy of the MDT proforma will be sent to the patient’s GP

Key Theme: Co-ordination of Care / Patient Pathways

Laboratory Investigational Guidelines 4 See Appendix 3

Clinical Guidelines for Plasma cell dycrasias 5 See Appendix 4 - and they are also available on the TSSG Haematology website at: http://clsmac70.ndcls.ox.ac.uk/tssg-haematology/Myeloma/Myeloma.html

Clinical Diagnostic Pathway 6 See Appendix 5.

Patient Pathways 7 See Appendix 5.

Treatment Planning 8 In order to ensure that all new patients are reviewed at the weekly MDT the following procedures are followed:

1. Identifying process for new patients with Myeloma: • Patient proformas (available on the TSSG Haematology website) are completed by

referring clinician and emailed to the MDT co-ordinator ([email protected]). See Appendix 6. Co-morbidity data and COSD are collected in this way.

4 Quality Measure Standard 13-2H-105 5 Quality Measure Standard 13-2H-108 6 Quality Measure Standard 13-2H-109 7 Quality Measure Standard 13-2H-110 8 Quality Measure Standard 13-2H-111



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• Pathology list brought to MDT by pathologist • Check EPR if already in haematology pathway / system • Check Infoflex to identify 2 ww / 32 day target • Log all details on Infoflex to track patient • Keep MDT pathology list in pathology folder as evidence of tracking / referral

2. The MDT co-ordinator will identify and track all new patients referred to the Myeloma service and those patients with a diagnosis of Myeloma under the care of another specialty.

3. All those clinicians from DGH’S that link with the Myeloma Network MDT have an agreed policy to refer all new suspected Myeloma diagnoses to the central Haemato-pathology services.

4. The OUH Myeloma MDT Co-ordinator creates and circulates a list of the patients referred to the members of the MDT, organises pathology and imaging and arranges video conferencing time during the meeting for the discussion and presentation of patients that need specialist care.

5. Discussions of patients will be documented on the proformas (see MDT proforma). 6. Paper and computer-file copies will also be kept by the MDT co-ordinator. 7. The holistic needs assessment will be considered in treatment planning and recorded in the MDT

proforma and patient notes

Key Theme: Patient Experience

Key Worker 9 1. The Myeloma ANP/SNP will be identified as the Key Worker for OUH patients diagnosed with

myeloma/ plasmacytoma/ AL Amyloidosis. Patients treated at the Horton Hospital will be given the name of the Haematology Consultant as their Key Worker.

2. The name of the Key Worker will be recorded in the medical records and MDT record and contact

details given to the patient/carers. 3. The Myeloma ANP/SNP/consultant will be the key worker from diagnosis through treatment

including chemotherapy, radiotherapy and transplant into follow up/discharge where relevant. 4. The Key Worker will provide the patient with written information regarding their diagnosis and

treatment and offer support throughout treatment and follow up based on the holistic needs assessment. 10

5. The Key Worker will signpost the patient to relevant agencies and health care professionals as the

need arises. 6. Transfer of the key worker role, for example to specialist palliative care or to primary care teams,

must be formally documented with full patient and family awareness. 7. Where patients are admitted and diagnosed in the end stages of cancer, clear arrangement

between palliative care services and primary care must be made to ensure clear identification of a key worker.

Core MDT Advanced Nurse Practitioner / Specialist Nurse Practitioner

The list of agreed responsibilities between the MDT and the Myeloma core nurse practitioner are as follows:

9 Quality Measure Standard 13-2H-113 10 Quality Measure Standard 13-2H-114



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Contributing to the MDT discussion and patient assessment/care planning decision of the team at their regular meetings:

• Fortnightly MDT Myeloma Meeting

o Actively contribute to the discussion of patients referred to the MDT o Where appropriate and agreed by MDT, co-ordinate patient treatment plans taking into

consideration the holistic needs assessment o Confirm proposed person to act as Key Worker where necessary for patients referred

to the MDT (OUH patients) • Ward MDT (weekly) & Ward Rounds (held twice weekly)

o Actively contribute to the discussion of patient care on the ward o Where appropriate and agreed by the MDT, co-ordinate patient treatment plans and

offer advice to ward nursing staff re discharge planning o Suggest/organise referrals to other Health Care Professionals o Contribute to the prioritisation of patients’ admission to the ward

• Providing expert nursing advice and support to other health professionals regarding areas for Myeloma:

o Stem Cell Harvest and High Dose Therapy o Support nursing and medical staff when/where there are specific complexities with the

care/management of patients with Myeloma o Support medical staff in breaking bad news

Involvement in Clinical Audit:

o Peer Review o Clinical Governance o As requested and where appropriate

Responsible for user issues and information for patients and carers Responsible for nominating the key worker for all OUH patients referred to the Myeloma team. Lead on communication issues and co-ordination of the patient’s pathway for the following groups of patients

1) All new/relapsed patients with Myeloma discussed at MDT being treated at the Cancer and Haematology Centre, Churchill Hospital. Those referred from within the Thames Valley Cancer Network for salvage/refractory therapy and High Dose Therapy will be nominated a High Dose Therapy SNP from the BMT team.

2) Patients with plasma cell dyscrasias being managed at the Oxford University Hospitals.

3) Patients with myeloma who require high-dose therapy will be assigned a BMT NP Patient Information 11

• Ensure that patients are aware of their treatment plan – verbally explaining their diagnosis, treatment, tests, etc

• Supply written information regarding their diagnosis and treatment based on their holistic needs assessment using the principles of patient information prescriptions

11 Quality Measure Standard 13-2H-114



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• Signpost patients to relevant support agencies and health care professionals as the need arises, e.g. psychological, social and spiritual support

• For patients who have special communication needs, the ANP/SNP should provide information on how to contact translator services, etc.

• Act as patient advocate ensuring that patients’ and carers’ concerns are fully addressed • Provide contact details of the haematology team to patients and their carers • Responsible for ensuring that a change of key worker is discussed with the patient/carer • To comply with the above the key worker should have completed the training necessary to

enable them to practice at level 2 for the psychological support of cancer patients and carers (see Appendix 7). 12

The MDT has agreed a list of responsibilities with the Myeloma core nurse practitioner for contribution to the management of the service and to utilise research in nursing practice for Myeloma patients.

Leadership

Inform the debate within the MDT, utilising current evidence of best practice to develop care in collaboration with colleagues. Support nurses within the centre to deliver excellent standards of care by acting as an expert role model and clinical leader. Provide specialist nursing contribution to the development and effective implementation of protocols, strategies and policies developed by the MDT Participate in clinical governance within the MDT team, providing input to secure quality improvement for the service throughout the patient pathway. Contribute to the development and maintenance of the links between the Centre, DGH’s and primary healthcare teams. Contribute to the specialist network at local, regional and national level.

Service Development

Work with patients and users in developing the services and the function of the MDT Manage change and implementation of new clinical nursing practice related to specialist area

Education

Identify and address the educational needs of patients, families, carers and staff involved in the delivery of the service Promote / encourage staff interest and create educational opportunities at all levels Contribute to relevant educational programmes

Research and Audit

• Actively contribute to audit and research in relation to the clinical specialty • Audit the existing service provision and prioritise areas for development, using national

benchmarks (where possible/available) feeding back to the MDT • Provide statistical and/or other evidence to demonstrate efficient and effective use of

resources in providing a high quality service




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Advanced Nurse Practitioner Referral Policy

This service is provided for all patients with Myeloma diagnosed and/or treated by the Oxford University Hospitals NHS Trust.

Level 1 intervention is available to patients at the Horton, Hospital, Banbury

Level 1-4 intervention is available to patients at the Churchill Hospital and John Radcliffe Hospital, Oxford

This service also provides outreach support to Primary Healthcare Teams across the Thames Valley Cancer Network. This specifically covers:

♦ Newly diagnosed patients for assessment of needs and support. ♦ Patients with recurrent disease. ♦ Patients with complex psychosocial needs. ♦ Patients demonstrating difficulties with coping and adaptation. ♦ Patients needing further information, advice and psychological support with decision-making about

treatment options. ♦ Advice for onward referral to other members of the multi-disciplinary team e.g. Psycho-oncology,

palliative care, dietetics.

Please refer patients to the Myeloma Advanced Nurse Practitioner – Tel: 01865 235284, Bleep 1979 Please note that the Specialist Nurses work on 4 levels of intervention and the professional accessing the service should negotiate the level of involvement required for each situation. Intervention levels are below. Levels of Intervention

Referrals to the service are accepted from all healthcare professionals, patients and their families either verbally or by writing. Access to the service may be on several intervention levels, depending on the specific needs of any situation. The professional should expect to negotiate the level of intervention required, as follows: Level 1: Advice, information and support may be accessed by health care professionals directly with the nurse practitioner. Contact is made with the patient by telephone only. Level 2: A single consultation visits for advice may be requested by a healthcare professional regarding a specific patient problem. Level 3: Short-term intervention with the patient and family for support, information and symptom management. The intention is then to withdraw within an agreed timescale but continue to provide level 1 support. Level 4: Longer-term involvement may be required for patients and families with multiple complex problems, those having intensive chemotherapy, or bone marrow/stem cell transplantation. Discharge of these patients will be negotiated with the patient, family and healthcare team, on an individual basis. Patients for palliative care will be discharged to local palliative services, where specialist advice can be provided by consultation.



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Permanent Record of Consultation 13 Patients who attend a Myeloma clinic at the Churchill Hospital will receive a copy of the consultation letter sent to their GP. This will outline relevant past medical history, history of diagnosis and treatment received, current disease status and treatment options discussed with the treatment, and follow-up plans. Also, see GP notification to be faxed (Appendix 2).

…………………………. Dr Karthik Ramasamy Lead Clinician Myeloma MDT Published: June 2011 Reviewed: June 2013

13 Quality Meausre Standard 13-2H-115



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Appendix 1

Contacts Contact telephone numbers for patients who are undergoing chemotherapy and who require urgent attention, are:

• Haematology Day Unit on 01865 235554 • Haematology Ward on 01865 235048 / 235049 • Triage on 01865 572192

Core Team Members:

Lead Clinician and Chair of MDT • Dr Karthik Ramasamy

MDT Chair and Lead Clinician Clinical Haematology Level 2, Cancer and Haematology Centre Churchill Hospital Headington Oxford, OX3 7LE

Telephone: 01865 235882 e-mail: [email protected]

Myeloma ANP/SNP

• Pamela Roberts Level 2 Cancer and Haematology Centre Churchill Hospital Old Road Headington Oxford, OX3 7LE

Telephone 01865 235284 Bleep: 1979 e-mail: [email protected]

MDT Co-ordinator

• Emma Bakpa MDT Co-ordinator Blue portacabin Churchill Hospital Headington Oxford, OX3 7LE

Telephone 01865 223552 Fax: 01865 572034 e-mail: [email protected]



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Appendix 2 – MDT review & Permanent Record of Consultation 14

NEXT DAY CANCER NOTIFICATION FOR PATIENTS DIAGNOSED WITH MYELOMA

GP NOTIFICATION & CHECK LIST TO BE FAXED15 Dear Dr Date:

The patient detailed below was informed today regarding the following: Patient Name

Patient Sticker

Address

Date of Birth Hosp/NHS No. Consultant(s) Involved

Diagnosis

Treatment Plan

Key Worker Contact Details

Advanced Nurse Practitioner Contact Details

Information Given (please tick)

Macmillan Cancer Support Booklet- Understanding Myeloma

Myeloma UK Leaflet – Myeloma

Myeloma UK leaflet - AL Amyloid

Myeloma UK leaflet - Plasmacytoma

Patient Information on specific Chemotherapy Regimens

Haematology Ward Contact details

Key Worker leaflet

Macmillan Oxford CAB Benefits Service leaflet

Maggie’s Cancer Information Centre leaflet

Other

A copy of the letter produced from the patients consultation discussing their treatment options will be sent to the patient and GP. Name of Health Professional: ………………………………… Signature: ……………………………………

14 Quality Measure Standard 13-2H-103 and Quality Meausre Standard 13-2H-115 15 Quality Measure Standard 13-2H-115



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Appendix 3 – Laboratory Investigational Guidelines 16 Subtype: Plasma cell Myeloma For all Myeloma subtypes, the following blood tests should be performed at diagnosis and at each relapse (some tests may be omitted according to physician’s discretion): Haematology: FBC, coagulation screen, ESR, group and save, DAT Biochemistry: U&E, creatinine, LFT, albumin, calcium, magnesium, phosphate, uric acid CRP, LDH, glucose Microbiology: serology for HIV, hepatitis B&C, EBV, CMV, varicella Immunology: serum electrophoresis, beta2-‐microglobulin, serum free light chains Urine: pregnancy test before each course of chemotherapy in women aged 12-‐55 years of age unless they have been sterilized or undergone hysterectomy

Diagnosis

During first line treatment

End of first line treatment

1st remission 1st relapse

Biopsies Bone marrow aspirate and trephine should be performed. Plasma cell number enumeration with clonality assessment should be performed

Bone marrow biopsy to assess remission status

Bone marrow aspirate and trephine should be performed. Plasma cell number enumeration with clonality assessment should be performed

Specific blood tests

Radiological tests

MRI Whole spine Skeletal survey

Routine imaging is not recommended in asymptomatic patients.

Consider MRI whole spine and/or skeletal survey based on clinical symptoms

Cyto-‐genetic tests

MM FISH MM FISH, provided no high risk features at Diagnosis

Molecular tests

Gene expression profiling is currently limited to clinical trials

Cardiac investiga-‐tions

Baseline ECG

In suspected patients with cardiac Amyloidosis

Baseline ECG

In suspected patients with cardiac Amyloidosis

Other investiga-‐tions

Hevylite analysis where paraprotein estimation is difficult. Immunophenotyping to establish clonality 24 Hour urine for Bence Jones protein




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Subtype: Plasmacytoma

For all plasmacytoma patients, the following blood tests should be performed at diagnosis and at each relapse (some tests may be omitted according to physician’s discretion):

Haematology: FBC, coagulation screen, ESR, group and save, DAT Biochemistry: U&E, creatinine, LFT, albumin, calcium, magnesium, phosphate, uric acid CRP, LDH, glucose Microbiology: serology for HIV, hepatitis B&C, EBV, CMV, varicella Immunology: serum electrophoresis, beta2-‐microglobulin, serum free light chains Urine: pregnancy test bfore each course of chemotherapy in women aged 12-‐55 years of age unless they have been sterilized or undergone hysterectomy

Diagnosis

During first line treatment

End of first line treatment

1st (and subsequent) remissions

1st (and subsequent) relapses

Biopsies 1st choice: Biopsy of lesion to confirm plasmacytoma Bone marrow aspirate and trephine should be performed. Plasma cell number enumeration with clonality assessment should be performed

1st choice: Biopsy of lesion to confirm plasmacytoma Bone marrow aspirate and trephine should be performed. Plasma cell number enumeration with clonality assessment should be performed


BM immunophenotyping to look for abnormal plasma cell clone

Radio-‐logical tests

Whole body FDG-‐PET Consider whole body MRI

CT of affected area. Consider Whole body FDG PET if residual lesion suspected

Whole body FDG-‐PET Consider whole body MRI


MM FISH if plasma cell percentage > 5%

Molecular tests

Restricted to clinical trials


Baseline ECG If cardiac Amyloidosis is suspected

Baseline ECG If cardiac Amyloidosis is suspected


24 Hour urine for Bence Jones protein



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Subtype: AL Amyloidosis For AL Amyloidosis, the following blood tests should be performed at diagnosis and at each relapse (some tests may be omitted at relapse according to physician’s discretion): Haematology: FBC, coagulation screen, ESR, group and save, DAT Biochemistry: U&E, creatinine, LFT, albumin, calcium, magnesium, phosphate, uric acid CRP, LDH, glucose Microbiology: serology for HIV, hepatitis B&C, EBV, CMV, varicella Immunology: serum electrophoresis, beta2-‐microglobulin, serum free light chains Urine: pregnancy test bfore each course of chemotherapy in women aged 12-‐55 years of age unless they have been sterilized or undergone hysterectomy

Diagnosis

During induction End of induction 1st remission 1st relapse

Biopsies 1st choice: Biopsy of target organ or sub cutaneous fat biopsy to confirm AL Amyloid Bone marrow aspirate and trephine should be performed. Plasma cell number enumeration with clonality assessment should be performed

Bone marrow aspirate and trephine should be performed. Plasma cell number enumeration with clonality assessment should be performed


For patients with leukaemic presentation, peripheral blood for flow cytometry is recommended for diagnosis2

Serum electrophoresis and sFLC

Radio-‐ogical tests

CT neck, chest, abdomen and pelvis

CT neck, chest, abdomen and pelvis


MM FISH if plasma cell percentage > 5%

Molecular tests

In clinical trials only


Baseline ECG Cardiac MRI

Baseline ECG Cardiac MRI


NT pro BNP troponin T SAP scan at National Amyloidosis centre



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Appendix 4 – Clinical Guidelines for Plasma cell Dycrasias 17 British council for standards in Haematology have published peer reviewed guidelines for diagnosis and management of myeloma They are freely available on the BCSH website and have been published in British Journal of Haematology. Link; http://www.bcshguidelines.com/4_HAEMATOLOGY_GUIDELINES.html?dpage=1&dtype=Haemato-oncology&sspage=0&ipage=0#gl

1. Guidelines for the diagnosis and management of multiple myeloma 2011. Br J Haematol. 2011 Jul;154(1):32-75. doi: 10.1111/j.1365-2141.2011.08573.x. Epub 2011 May 14.

2. Guidelines for supportive care in multiple myeloma 2011. Br J

Haematol. 2011 Jul;154(1):76-103. doi: 10.1111/j.1365-2141.2011.08574.x. Epub 2011 Apr 22

3. UK Myeloma Forum (UKMF) and Nordic Myeloma Study Group (NMSG):

guidelines for the investigation of newly detected M-proteins and the management of monoclonal gammopathy of undetermined significance (MGUS). Br J Haematol. 2009 Vol. 148, Issue 3, 491

4. Guidelines on the diagnosis and management of solitary

plasmacytoma of bone, extramedullary plasmacytoma and multiple solitary plasmacytomas: 2009 update

At the annual Myeloma Network meeting, we agreed to follow these published national guidelines for management of local patients with Plasma cell dyscrasias




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Appendix 5 – Clinical Diagnostic Pathway & Patient Pathways30



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Appendix 6 – Treatment Planning 18




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Cogent comorbid ailment

Grade 3 Severe Decompensation

Grade 2 Moderate Decompensation

Grade 1 Mild Decompensation

Cardiovascular System Myocardial Infarct � MI d 6 months � MI > 6 months ago � MI by ECG only, age undetermined

Angina / Coronary Artery Disease

� Unstable angina

� Chronic exertional angina � Recent (d 6 months) Coronary Artery

Bypass Graft (CABG) or Percutaneous Transluminal Coronary Angioplasty (PTCA)

� Recent (d 6 months) coronary stent

� ECG or stress test evidence or catheterization evidence of coronary disease without symptoms

� Angina pectoris not requiring hospitalization

� CABG or PTCA (>6 mos.) � Coronary stent (>6 mos.)

Congestive Heart Failure (CHF)

� Hospitalized for CHF within past 6 months

� Ejection fraction < 20%

� Hospitalized for CHF >6 months prior� CHF with dyspnea which limits

activities

� CHF with dyspnea which has responded to treatment

� Exertional dyspnea � Paroxysmal Nocturnal Dyspnea (PND)

Arrhythmias

� Ventricular arrhythmia d 6 months � Ventricular arrhythmia > 6 months � Chronic atrial fibrillation or flutter � Pacemaker

� Sick Sinus Syndrome � Supraventricular tachycardia

Hypertension

� DBP>130 mm Hg � Severe malignant papilledema or other

eye changes � Encephalopathy

� DBP 115-129 mm Hg � DBP 90-114 mm Hg while taking

antihypertensive medications � Secondary cardiovascular symptoms:

vertigo, epistaxis, headaches

� DBP 90-114 mm Hg while not taking antihypertensive medications

� DBP <90 mm Hg while taking antihypertensive medications

� Hypertension, not otherwise specified

Venous Disease

� Recent PE (d 6 mos.) � Use of venous filter for PE’s

� DVT controlled with Coumadin or heparin

� Old PE > 6 months

� Old DVT no longer treated with Coumadin or Heparin

Peripheral Arterial Disease

� Bypass or amputation for gangrene or arterial insufficiency < 6 months ago

� Untreated thoracic or abdominal aneurysm (>6 cm)

� Bypass or amputation for gangrene or arterial insufficiency > 6 months ago

� Chronic insufficiency

� Intermittent claudication � Untreated thoracic or abdominal

aneurysm (< 6 cm) � s/p abdominal or thoracic aortic

aneurysm repair Respiratory System � Marked pulmonary insufficiency

� Restrictive Lung Disease or COPD with dyspnea at rest despite treatment

� Chronic supplemental O2 � CO2 retention (pCO2 > 50 torr) � Baseline pO2 < 50 torr � FEV1 (< 50%)

� Restrictive Lung Disease or COPD (chronic bronchitis, emphysema, or asthma) with dyspnea which limits activities

� FEV1 (51%-65%)

� Restrictive Lung Disease or COPD (chronic bronchitis, emphysema, or asthma) with dyspnea which has responded to treatment

� FEV1 (66%-80%)

Gastrointestinal System Hepatic

� Portal hypertension and/or esophageal bleeding d 6 mos. (Encephalopathy, Ascites, Jaundice with Total Bilirubin > 2)

� Chronic hepatitis, cirrhosis, portal hypertension with moderate symptoms "compensated hepatic failure"

� Chronic hepatitis or cirrhosis without portal hypertension

� Acute hepatitis without cirrhosis � Chronic liver disease manifested on

biopsy or persistently elevated bilirubin (>3 mg/dl)

Stomach / Intestine

� Recent ulcers( d 6 months ago) requiring blood transfusion

� Ulcers requiring surgery or transfusion ! 6 months ago

� Diagnosis of ulcers treated with meds � Chronic malabsorption syndrome � Inflammatory bowel disease (IBD) on

meds or h/o with complications and/or surgery

Pancreas

� Acute or chronic pancreatitis with major complications (phlegmon, abscess, or pseudocyst)

� Uncomplicated acute pancreatitis � Chronic pancreatitis with minor

complications (malabsorption, impaired glucose tolerance, or GI bleeding)

� Chronic pancreatitis w/o complications

Adult Comorbidity Evaluation-27 Identify the important medical comorbidities and grade severity using the index. Overall Comorbidity Score is defined according to the highest ranked single ailment, except in the case where two or more Grade 2 ailments occur in different organ systems. In this situation, the overall comorbidity score should be designated Grade 3.



23

Rev November 2003 Washington University School of Medicine Clinical Outcomes Research Office

Cogent comorbid

ailment Grade 3

Severe Decompensation Grade 2

Moderate Decompensation Grade 1

Mild Decompensation Renal System End-stage renal disease

� Creatinine > 3 mg% with multi-organ failure, shock, or sepsis

� Acute dialysis

� Chronic Renal Insufficiency with creatinine >3 mg%

� Chronic dialysis

� Chronic Renal Insufficiency with creatinine 2-3 mg%.

Endocrine System (Code the comorbid ailments with the (*) in both the Endocrine system and other organ systems if applicable) Diabetes Mellitus

� Hospitalization d 6 months for DKA � Diabetes causing end-organ failure

� retinopathy � neuropathy � nephropathy* � coronary disease*

� peripheral arterial disease*

� IDDM without complications � Poorly controlled AODM with oral agents

� AODM controlled by oral agents only

Neurological System Stroke

� Acute stroke with significant neurologic deficit

� Old stroke with neurologic residual � Stroke with no residual � Past or recent TIA

Dementia

� Severe dementia requiring full support for activities of daily living

� Moderate dementia (not completely self-sufficient, needs supervising)

� Mild dementia (can take care of self)

Paralysis

� Paraplegia or hemiplegia requiring full support for activities of daily living

� Paraplegia or hemiplegia requiring wheelchair, able to do some self care

� Paraplegia or hemiplegia, ambulatory and providing most of self care

Neuromuscular

� MS, Parkinson’s, Myasthenia Gravis, or other chronic neuromuscular disorder and requiring full support for activities of daily living

� MS, Parkinson’s, Myasthenia Gravis, or other chronic neuromuscular disorder, but able to do some self care

� MS, Parkinson’s, Myasthenia Gravis, or other chronic neuromuscular disorder, but ambulatory and providing most of self care

Psychiatric � Recent suicidal attempt

� Active schizophrenia

� Depression or bipolar disorder uncontrolled

� Schizophrenia controlled w/ meds

� Depression or bipolar disorder controlled w/ medication

Rheumatologic (Incl. Rheumatoid Arthritis, Systemic Lupus, Mixed Connective Tissue Disorder, Polymyositis, Rheumatic Polymyositis) � Connective Tissue Disorder with

secondary end-organ failure (renal, cardiac, CNS)

� Connective Tissue Disorder on steroids or immunosuppressant medications

� Connective Tissue Disorder on NSAIDS or no treatment

Immunological System (AIDS should not be considered a comorbidity for Kaposi's Sarcoma or Non-Hodgkin's Lymphoma) AIDS

� Fulminant AIDS w/KS, MAI, PCP (AIDS defining illness)

� HIV+ with h/o defining illness. CD4+ < 200/PL

� Asymptomatic HIV+ patient. � HIV+ w/o h/o AIDS defining illness.

CD4+ > 200/PL Malignancy (Excluding Cutaneous Basal Cell Ca., Cutaneous SCCA, Carcinoma in-situ, and Intraepithelial Neoplasm)

Solid Tumor including melanoma

� Uncontrolled cancer � Newly diagnosed but not yet treated � Metastatic solid tumor

� Any controlled solid tumor without documented metastases, but initially diagnosed and treated within the last 5 years

� Any controlled solid tumor without documented metastases, but initially diagnosed and treated ! 5 years ago

Leukemia and Myeloma

� Relapse � Disease out of control

� 1st remission or new dx <1yr � Chronic suppressive therapy

� H/o leukemia or myeloma with last Rx > 1 yr prior

Lymphoma � Relapse � 1st remission or new dx <1yr � Chronic suppressive therapy

� H/o lymphoma w/ last Rx >1 yr prior

Substance Abuse (Must be accompanied by social, behavioral, or medical complications) Alcohol

� Delirium tremens � Active alcohol abuse with social, behavioral, or medical complications

� H/o alcohol abuse but not presently drinking

Illicit Drugs � Acute Withdrawal Syndrome � Active substance abuse with social, behavioral, or medical complications

� H/o substance abuse but not presently using

Body Weight Obesity � Morbid (i.e., BMI t 38)

OVERALL COMORBIDITY SCORE (Circle one.) 0 1 2 3 9 None Mild Moderate Severe Unknown



24



25

Appendix 7 – Patient Information - Core members who have attended the Advanced Communication Skills Course 19

Name of core member Completed course (Yes / No)

Karthik Ramasamy Yes

Andy Peniket No

Tim Littlewood No

David Cutter Yes

Shiroma de Silva-Minor Not known

Kevin Gatter No (no clinical contact with patients)

Francesco Pezzella No (no clinical contact with patients)

Elizabeth Soilleux No (no clinical contact with patients)

Niall Moore Yes

Richard Hughes Not known

Pamela Roberts Yes

Sarah Luther No

Emma Bakpa No (no clinical contact with patients)


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