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					                      Central South Coast
CONSTITUTION
                          Cancer Network
BRAIN AND CNS
NSSG




                          Network Information Document

                Network Brain and CNS Site Specific Group

                     Constitution and Terms of Reference




                                 Status:        Draft

                       Version Number:           1.3

                       Publication Date:

                           Review Date:       April 2013




                                            CONSTITUTION

                                           BRAIN AND CNS
                                                   NSSG



                                                           1
 Documentation History

 The document is located in:
 The Central South Coast Cancer Network office, in hardcopy and electronic format

 Revision History

   Date         Version     Status    Author        Summary of Changes
15/6/2011           1.0      Draft    DM            First Draft outline from 2008 measures

21/7/2011           1.0      Draft    DM            SO made some minor amendments
21/09/2011          1.0      Draft    DM            Updated Measure numbers
06/10/2011          1.0      Draft    SS            Updated contacts Page 18
24/10/11            1.1      Draft    MD            Updated following meeting 14/10/11
26/10/11            1.1      Draft    DM            Added clinical guidelines to treatment
                                                    pathways heading as are intertwined.
                                                    Added area wide communication framework
01/11/2011          1.1      Draft    DM            Added Operational policy for Neuro-
                                                    rehabilitation facilities from Kim Emery.
15/11/2011          1.1      Final    DM            Status changed from Draft to final following no
                                                    further comments from Group and updated
                                                    sign off sheet.
17/11/2011          1.1      Final    DM/PG         Added emergency Surgical Interventions and
                                                    cerebral Metastasis Pathway
24/11/2011          1.1      Final    DM            Post review added 2ww referral detail from
                                                    Pathways of care document into constitution
                                                    and IOG compliant MDT configuration.
21/02/2012          1.2     Refresh   DM            Updated 2011/12 doc for 2012/13
06/03/2012          1.2     Refresh   DM            Added times and days for the Location of
                                                    Multidisciplinary Specialist Clinics
26/03/2012          1.2      Final    DM            Added Poole and Dorset membership changes
                                                    and updated referral patterns diagram to
                                                    include Chemo and radiotherapy services.
12/04/12            1.2      Draft    DB            Updated Hospital names & email addresses.
11/05/12            1.2      Draft    JG            General update
01/06/12            1.2      Draft    JG            Update
11/06/12            1.3      Draft    JG            Further update
04/07/12            1.3      Draft    DB            Added new measure 11-1C-115k, 11-1C-
                                                    116k,11-1C-117k



                                                                                                 2
Brain and CNS NSSG:
This Constitution has been agreed by:

         Position          Chair of the Brain NSSG

         Name              Paul Grundy

         Organisation      University Hospital Southampton Foundation Trust

         Dated             January 2012

 Position           Chair of the Network Board

 Name               Sarah Elliott

 Organisation       SHIP PCT Cluster

 Dated

         Position          Specialist Commissioning Group Representative

         Name              David Harris

         Organisation      South Central Specialist Commissioning Group

         Dated

 Position           Area Lead for Neuro-rehabilitation

 Name               Post Vacant

 Organisation       -

 Dated              -

         Brain NSSG including Dorset members agreed the constitution on:

         Date Agreed

         Constitution Review Date         April 2013

Table of Contents                                                          Measure   Page
Cover Sheet and Agreements


                                                                                        3
1.0 Introduction                                                                      6
2.0 Network Configuration                                            11-1A-201,203k   6

3.0 Establishment of the Network Brain and CNS Site Specific Group
    (SSG)
       3.1 Terms of Reference                                                         7

       3.2 Objectives

       3.3 Membership of the group                                                    8

       3.4 Frequency of Meetings                                                      9

       3.5 Reporting Arrangements

       3.6 Review of the Constitution
4.0    Core Membership of the Group                                                   10

5.0    Key Contacts                                                                   12

6.0    Establishment of the Neuro-Oncology Disease Site Group(s)       11-1A-202k     13

7.0    Location of Multidisciplinary Specialist Clinics                11-1A-205k     13

8.0    NSSG MDT Configuration                                                         15

9.0    Operational policy for Neuro-rehabilitation facilities          11-1A-206k     17

10.0   The Presentation Pathway                                        11-1C-105k     21
        9.1 Brain and CNS                                                             24
        9.2 Glioma                                                                    25

11.0   The Diagnostic Pathway                                          11-1C-106k     25
       11.1 Imaging for Adult Brain Tumour                                            25
       11.2 Imaging for Meningioma                                                    26
       11.3 Imaging for Brain Metastases                                              27
       11.4 Pathology Pathway                                                         28

12.0   The Treatment Pathway and Agreed NDSG Clinical Guidelines     11-1C-103+107k   34
       12.1 Primary Disease                                                           34
       12.2 Relapse                                                                   35
       12.3 Chemotherapy Guidelines                                                   35
       12.4 Meningioma pathway                                                        37
       12.5 Pituitary Pathway                                                         39
       12.6 Cerebral metastases pathway                                               40
       12.7 Emergency surgical intervention policy                                    41
       12.8 Chemotherapy Algorithm generic measure for NSSG            11-1c-115K     41
       12.9 The TYACN Pathway for Initial Management                   11-1C-116k     41
       12.10 The TYA Pathway for Follow Up on Completion of First      11-1C-117k     41
             Line Treatment                                                           41

                                                                                           4
13.0 The Follow Up Pathway                 11-1C108k    41
     13.1 Surveillance                                  42
     13.2 Rehabilitation pathway
14.0 Area Wide Minimum dataset (MDS)       11-1C-104k   44

15.0   Area Wide Communication Framework   11-1C-109k   44




                                                             5
1. Introduction

The purpose of this document is to provide the Central South Coast Cancer Network (CSCCN) and
Dorset Cancer Network (DCN) Delivery Boards, Trusts, Primary Care Trusts (PCTs) Clinical
Commissioning Groups (CCGs), the Specialised Commissioning Group and all clinicians engaged in
the provision of cancer services, an overview of the local Brain and CNS service. The service
configuration for the populations of CSCCN & DCN takes into account the recommendation of the
Improving Outcomes for People with Brain and Other Central Nervous System Tumours (NICE
2006).

The document describes the role and function of the CSCCN’s/DCN’s Brain and CNS Network Site
Specific Group (NSSG) and its progress towards delivering the recommendations contained within
the IOG.

2.0 Network Configuration

Cancer Networks are based around patient pathways and these are founded on the relationship
between primary care, cancer units and cancer centres. The key to this relationship is the fact that
the majority of patient pathways pass through a number of organisational boundaries, often
requiring highly specialist surgery, complex radiotherapy and chemotherapy. A balance needs to
be provided between local and specialist provision and consistent standards of care provided
regardless of the provider.

The Central South Coast Cancer Network provides care for 2.3 million population, with 14,000
people registered with cancer annually. The constituent members of the network are Trusts,
Primary Care Trusts Clinical Commissioning Groups (CCGs), Independent Sector, Voluntary Sector
(Charities and Hospices), Channel Islands, the Strategic Health Authority and Specialist
Commissioning.

Patients with brain and neurological cancers, including those from Dorset Cancer Network, are all
referred to University Hospital Southampton NHS Foundation Trust (UHSFT) for surgery,
radiotherapy and complex chemotherapy. Palliative chemotherapy and radiotherapy may be
provided at Portsmouth and Poole Cancer Centres following discussion and agreement with the
MDTs at UHSFT.

Cancer Care Pathways outline the steps and stages in the patient journey within defined
timescales from referral through to diagnostics, staging, treatment, rehabilitation, follow up and,
where applicable, onto palliative care. A wide range of healthcare providers contribute to and are
involved in the delivery of these care pathways.

The purpose of this pathway document is to provide a clear and concise account of the key stages,
diagnostic tests, treatments and on going care that are expected to take place for patients who are
suspected of having brain & CNS cancer.

There are a number of key elements that are an integral part of care pathways including:
      Prompt referral for investigations and early diagnosis
      Evidence of timely and appropriate care

                                                                                                  6
      Evidence of best practice
      Evidence of service user involvement in care pathway development and design
      Evidence of pathways being owned, used and driven by service users
      Evidence of service specifications/quality indicators to inform and support commissioning
      Evidence of information to support patients at key stages
      Evidence of pathway accreditation and audit
      Compliance with Improving Outcomes Guidance (NICE 2006)

The main reference documents which support this pathway document and which have been
adopted as guidelines by the Central South Coast Cancer Network Brain and CNS Site Specific
Group are:

      National Institute for Clinical Excellence (NICE) Guidance on Cancer Services – Improving
       Outcomes for People with Brain and Other Central Nervous System Tumours (June 2006)
       www.nice.org.uk

The pathway information complements clinical protocols for each of the CSCCN/DCN Cancer
Centre/Unit.


3.0 Brain/CNS Network Site Specific Group (NSSG)

3.1 Terms of Reference

The purpose of the Brain & CNS Cancer Network Group is to improve the quality of care for all
patients suspected of, or having, brain & CNS cancer in the CSCCN and DCN, in line with the
recommendations of the IOG for People with Brain & Other CNS Tumours (NICE 2006)

The Network Brain & CNS Cancer Site Specific Group is established to:

      Provide the Cancer Networks’ Management Groups including Commissioners with the
       primary source of clinical opinion on all issues relating to Brain & CNS cancer within the
       networks;

      Advise and consult with the Cancer Networks’ Management Groups regarding service
       planning (including workforce issues), for Brain & CNS cancer;

      Ensure service planning is in line with national guidelines /standards;

      Ensure the Cancer Network’s Management Groups decisions become integrated into local
       practice;

      Monitor progress on meeting National Cancer Peer Review Measures and provide feedback
       to the Cancer Network Management Groups;

      Promote a culture for the active participation in Research and Development;

      Promote both inter and intra-network links, incorporating the views of all stakeholders.

      Ensure the views of service users (patients/carers) are taken into consideration when
       planning future service provision.

                                                                                                   7
3.2 The objectives of the Network Brain & CNS Site Specific Group for CSCCN / DCN are to agree
and implement:

      Referral guidelines

      Clinical guidelines/pathways

      High quality consistent information for patients

      Data collection and reporting standards, including a minimum data set

      Patient survey methodology

      Undertake appropriate Service Improvement initiatives;

      Identify appropriate audits to be undertaken;

      Agree a portfolio of Research & Development studies in collaboration with both DCN &
       CSCCN’s Research Networks, participating in nationally recognised studies;

      Produce an Annual Report for both the Cancer Networks incorporating a work plan to be
       agreed at first meeting following 1st April each year.


3.3 Membership of the group will comprise of:

      Network Clinical Lead for Brain & CNS cancer,

      MDT Clinical Leads for Brain & CNS cancers from each disease site i.e. base of skull,
       pituitary, spinal cord, brain/CNS and Network MDTs;

      Medical oncologists;
      Clinical Oncologists,

      NHS employed user representative,

      Neuro-rehabilitation Lead,

      Clinical Nurse Specialist;

      Named Admin Support

      Two User Involvement Reps (Network facilitator or Patient Rep as appropriate)

   (Where users have not been identified users issues will be relayed to the networks’ partnership
   panels through the NSSG’s representative for patient information and users issues)

   The group’s chair should be an elected member of the above core membership. The group will also
   identify members who can undertake the following roles within the group:

                                                                                                8
      Audit

      Vice chair

      Research/trial recruitment lead

   Additional members will comprise of:-

          Neurologists from each Trust

          Pathologist;

          Radiologist;

          Primary Care Clinical Rep;

          Specialist Commissioning Representative

          PCT/CCG representative

          CSC Cancer Network Management Team Rep;

          DCN Cancer Network Management Team Rep;

          CSC Cancer Network Allied Health Professional Lead

3.4 Frequency of Meetings:-

Meetings will be held 3 times per year or more frequently if required.

3.5 Reporting Arrangements

      Minutes of the meetings of the CSCCN/DCN Brain & CNS Group will be placed on the
       CSCCN website.
      The Group will be accountable to the CSCCN Delivery Board.

3.6 Review of the Constitution

      The Constitution will be reviewed annually at the first meeting that follows the 1 st April.

      This will be agreed and signed off by the Chairperson and Chair of CSCCN/DCN Delivery
       Boards, and Specialist Commissioning Group representative.




                                                                                                      9
 4.0 Core Members of the Brain/CNS Group


   First Name           Surname          Title                     Contact Details                Role/Responsibilities
University Hospital Southampton Foundation Trust
Ali               Nader-Sepahi                     Ali.Nader-Sepahi@uhs.nhs.uk          Neurosurgery Consultant
Emad              Shenouda           Dr            Emad.shenouda@uhs.nhs.uk             Neurosurgery Consultant
Geoff             Sharpe             Dr            Geoff.sharpe@uhs.nhs.uk              Consultant Clinical Oncologist
Harriet           Joy                Dr            Harriet.joy@uhs.nhs.uk               Consultant Neuroradiologist
Ingrid            Mazanti            Ms            Ingrid.mazanti@uhs.nhs.uk            Consultant Neuropathologist
Janet             Day                Ms            Janet.day@uhs.nhs.uk                 Clinical Nurse Specialist
Jonathan          Frankel            Dr            Jonathan.Frankel@uhs.nhs.uk          Consultant Neurologist
Omar              Alsalihi           Dr            Omar.alsalihi@suht.swest.nhs.uk      Consultant Clinical Oncologist TYA and
                                                                                        Research lead
Paul            Grundy                Mr           Paul.grundy@uhs.nhs.uk               Consultant Neurosurgeon


Portsmouth Hospitals NHS Trust
Danny           Dubois                Dr           Danny.dubois@porthosp.nhs.uk         Clinical Consultant Oncologist
William         Gibb                  Dr           William.gibb@porthosp.nhs.uk         Consultant Neurologist

Dorset Region
Rupert          Page                  Dr           Rupert.page@poole.nhs.uk             Consultant Neurologist
Joseph          Davies                Dr           Joseph.H.Davies@poole.nhs.uk         Consultant Clinical Oncologist
Ros             Pugh                  Dr           Ros.pugh@rbch.nhs.uk                 Consultant Palliative Care
Richard         Hemmingfield          Mr                                                Dorset Cancer Network
                                                   Richard.hemmingfield@dorset.nhs.uk   Clinical Support Manager

Hampshire Hospitals Foundations Trust
(Basingstoke)
Stephen         Hepworth              Mr           Stephen.hepworth@hhft.nhs.uk         Cancer Lead Manager
Lucy            Kinton                Dr           Lucy.kinton@hhft.nhs.uk              Consultant neurologist

                                                                                                                                 10
Salisbury Hospital Foundation Trust
Jo                Lovett                Dr       jo.lovett@salisbury.nhs.uk      Consultant Neurologist


Western Sussex Hospitals Trust (St Richard’s
Hospital)
Simon           Hammans                          Simon.hammans@RWS-TR.NHS.UK.    Lead clinician


Hampshire Hospitals Foundation Trust (Winchester
& Eastleigh)
Clive           Vandervelde           Dr         clive.vandervelde@hhft.nhs.uk   Consultant Radiologist

Patient Representatives
Helen            Bulbeck                Ms       Helen@brainstrust.org.uk        Service user rep
Helen            Eggleton               Ms       Helen.eggleton@csccn.nhs.uk     PPI Lead CSCCN

Commissioning Representatives
David           Harris                  Mr       David.harris@scscg.nhs.uk       Commissioner South Central SCG

CSCCN Representatives
Janice          Gabriel                 Mrs      Janice.gabriel@csccn.nhs.uk     Nurse Director CSC
Kim             Emery                   Mrs      Kim.emery@csccn.nhs.uk          Allied Health Professional lead CSCCN
Matt            Hayes                   Mr       Matt.hayes@csccn.nhs.uk         Medical Director CSC
DCN Representatives
Verena          Cooper                  Mrs      Verena.cooper@ferndown.nhs.uk   Lead Nurse DCN




                                                                                                                         11
5.0 Key Contacts

University Hospital Southampton Foundation Trust
Lead Clinician       Vacancy           paul.grundy@uhs.nhs.uk
Clinical Nurse       Janet Day         janet.day@uhs.nhs.uk                07699 664285
Specialist
MDT Co-ordinator Debbie Adams          debbie.adams@uhs.nhs.uk             02380 796596
Lead Cancer          Christine Day     Christine.day@uhs.nhs.uk
Manager

Portsmouth Hospital Trust
Lead Clinician     Danny Dubois         daniel.dubois@porthosp.nhs.uk      07759 030827
Clinical Nurse
Specialist
Lead Cancer        Karen Lillington     Karen.lillington@porthosp.nhs.uk   02392 286000 ext
Manager                                                                    4769

Isle of Wight Healthcare Primary Care Trust

Lead Clinician      Mr Mike Nelson      Mike.nelson@iow.nhs.uk
Clinical Nurse
Specialist
Lead Cancer         Diane Adams         Diane.adams@iow.nhs.uk             01983 534728
Manager

Hampshire Hospitals Foundation Trust (Winchester)

Lead Clinician      Dr Clive            clive.vandervelde@hhft.nhs.uk
                    Vandervelde
Lead Cancer         Caroline Cross      Caroline.cross@hhft.nhs.uk         01962 825373
Manager

Hampshire Hospitals Foundation Trust (Basingstoke)

Lead Clinician        Lucy Kinton        lucy.kinton@hhft.nhs.uk           01256 313256
Cancer tracker        Dee Jackman        dee.jackman@hhft.nhs.uk           01256 313253
Lead Cancer           Beth Norton        Beth.norton@hhft.nhs.uk
Manager
St Richard’s Hospital (West Sussex NHS Trust)

Lead Clinician      Simon Hammans       Simon.hammans@wsht.nhs.uk
Lead Cancer         Tim Hutson          tim.hutson@wsht.nhs.uk             01243 788122 ext
Manager                                                                    2813

Salisbury NHS Foundation Trust

Lead Clinician      Haider Katifi       Haider.katifi@salisbury.nhs.uk
CNS

                                                                                          12
Lead Cancer             Jonathan Wright          Jonathan.wright@salisbury.nhs.uk 01722 336262 ext
Manager                                                                           2873

Bournemouth and Christchurch NHS Trust

Lead Clinician          Ros Pugh                 ros.pugh@rbch.nhs.uk            01202705208
CNS                     Jason Bowie              jason.bowie@poole.nhs.uk        01202443072
MDT Co-ordinator        Matthew Whitlock         matthew.whitlock@poole.nhs.uk   01202448594
Lead Cancer             Sue Higgins              Sue.higgins@rbch.nhs.uk
Manager

Poole Hospital NHS Foundation Trust

Lead Clinician          Joe Davies               joseph.davies@poole.nhs.uk      01202448435
CNS                     Jason Bowie              jason.bowie@poole.nhs.uk        01202443072
MDT Co-ordinator        Matthew Whitlock         matthew.whitlock@poole.nhs.uk   01202448594
Lead Cancer             Sue Whitney              sue.whitney@poole.nhs.uk        01202448768
Manager

Dorset County Hospital Dorchester

Lead Clinician          Maxine Flubacher         maxine.flubacher@poole.nhs.uk

CNS                             Jason Bowie      Jason.bowie@Poole.nhs.uk

MDT Co-ordinator        Matthew Whitlock

Lead Cancer             Anita Thomas             Anita.thomas@dchft.nhs.uk       01305 25 4827
Manager


6.0 Establishment of the Neuro-Oncology Disease Site Group(s)

University Hospital Southampton Foundation Trust (UHSFT) is the designated specialist MDT
host for pituitary, skull
base, spinal, brain and CNS malignancies.

Network MDT for CSCCN is based at UHS and for DCN is at based Bournemouth Hospitals.

7.0 Location of Multidisciplinary Specialist Clinics

Patients will be assessed in the following clinics:

Wessex Neurological Centre: (UHS)
Tuesday pm
   A) Neurosurgery neuro-oncology clinic (PG)
   B) Neuro-oncology clinic (GS and OA)
Wednesday pm
   Neurosurgery neuro-oncology clinic (JD)


                                                                                               13
Thursday pm
   Neuro-oncology clinic (GS and OA)

Portsmouth Hospitals Trust
Monday Am
    Neuro-oncology clinic (DD)
Wednesday PM
    Neuro-oncology clinic (DD

Poole Hospital
Monday, Wednesday pm
   Neuro-Oncology Clinic (JD)
Tuesday, Thursday
   Neurology Clinic – Oncology patients given first available slot (MF)
Royal Bournemouth Hospital
Thursday am
   Neuro-Oncology Clinic (JD)
Dorchester County Hospital
Wednesday pm
   Neurology Clinic – Oncology patients given first available slot (MF)

All new patients with a diagnosis of Brain and CNS Cancer will be discussed and their
management agreed at the weekly multi-disciplinary team (MDT) meeting which takes place at
UHS. All relevant documentation including the radiological and pathological information is
available at the MDT meeting. Other patients will be discussed as and when necessary
throughout the patient journey. Core members of the team (or their arranged cover) should
attend at least 50% of MDT meetings.

The Specialist Multi-disciplinary Team members should include:

   Neurosurgeon(s): the specialist neurosurgeon spends a minimum of 50% of clinical activity in
    neuro-oncological surgery
   Neuroradiologist(s): the specialist radiologist spends a minimum of 50% of clinical activity in
    the practice of neuroradiology
   Neuropathologist(s): a registered neuropathologist with specialist expertise in neuro-
    oncology, who takes part in the national External Quality Assurance scheme for
    neuropathology organized by the British Neuropathological Society
   Neurologist(s): a consultant neurologist with expertise in neuro-oncology
   Oncologist(s): a clinical oncologist with special interest in tumours of the CNS
   Clinical Nurse Specialist(s): a nurse with specialist knowledge of CNS tumours and skills in
    communication
   Palliative Care: a healthcare professional with experience and expertise in the provision of
    palliative care services for patients with CNS tumours.
   Neuropsychologist(s): a clinical neuropsychologist with a special interest in tumours of the
    CNS
   Specialist Allied Health Professionals
   Multi Disciplinary Team Co-ordinator(s)
   Others as required (extended Multi Disciplinary Team members)




                                                                                                14
8.0 NSSG MDT configuration.




                                        UHSFT MDTs          Poole
      PHT
                                 Network (CSCCN only)      Bournemouth
      WSHT (SRH)
                                 Neurosciences             Dorset
      IOW
                                 Pituitary
      SFT                                                 Dorset Cancer Network
                                                                   MDT
                                 Base of Skull
      HHT (Winchester                                    (Based in Bournemouth)
      and Basingstoke)
                                 Spinal




                                                                           15
                                                                         Central South Coast                            Key:
                                                                    Cancer Care Referral Pathways                                 chemotherapy
KEY:                                                                                                                              Surgery
UHS:    University Hospital Southampton NHS Foundation Trust
HHFT:   Hampshire Hospitals NHS Foundation Trust (Winchester site)
SFT:
HHFT:
        Salisbury Foundation Trust
        Hampshire Hospitals NHS Foundation Trust (Basingstoke site)
                                                                                 Brain and CNS
                                                                                                                                  radiotherapy
WSHT:   Western Sussex Hospitals NHS Trust (St Richards Hospital [SRH])
PHT:    Portsmouth Hospitals NHS Trust
IOW:    Isle of Wight NHS Trust
DCH     Dorset County Hospital NHS Foundation Trust
RBCH    The Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust                    HHFT, Basingstoke
                                                                                                                site

                        HHFT, Winchester site

                                                                                                                        WSHT
                                                                                                                       SRH site
                                                                                UHS
                 SFT
                                                                                MDT




                                                                                                          PHT
                    Poole and Dorset
                     Poole and Dorset
                                                                                                         PHTP
                    Poole and                                        R.B.C.H.
                                                                                      IOW

                                                   D.C.H.




                                                                                                                                                 16
9.0 Operational policy for Neuro-rehabilitation facilities

The exact provision and availability of neuro-rehabilitation facilities are not known. This is part of the
group’s work programme and is also being taken forward by the CSCCN AHP lead to work toward
availability of local rehabilitation services as defined in the IOG and National Rehabilitation Pathway (see
13.2).

It is anticipated that a large proportion of specialist rehabilitation activity is based within in-patient settings
such as the regional neuro-science centre at Southampton and the spinal injury rehab unit at Salisbury;
with very limited specialist neuro-rehab available in the community or surrounding cancer units/community
hospitals at the current time.

The brain and CNS NSSG has agreed that rehabilitation is an essential requirement for this patient group; to
address there complex cognitive physical and communication needs, during and as a result of surgical
intervention, radiotherapy or chemotherapy treatments.

As a result the brain and CNS NSSG has agreed a local rehabilitation pathway that is based on the National
Brain and CNS Rehabilitation Pathway developed by NCAT (Please see below).


Manual for Cancer Services 2008: Rehabilitation Measures
CSCCN Rehabilitation Intervention for Brain CNS Cancer Pathway - Peer Review Measure
11- IE-111v


Diagnosis and Care Planning

       Undertake a holistic assessment for Rehabilitation needs including respiratory function,
        risk of falls, mobility, muscle strength, cognitive function, mood and coping strategies
       Functional and neurological assessment to improve QOL including mobility, exercise
        tolerance, functional tasks, balance and limb function.
       Seating, positioning and wheelchair assessment and information and advice for carers
       Communication and swallowing assessment if appropriate
       Provide functional safety advice, behavioural management, falls risk management and
        access visit
       Assess levels of fatigue and provide advice on anxiety management and relaxation
        techniques
       Identify patients with pre-existing respiratory disease if to be referred for surgery
       Attend MDT and liaise with other specialists
       Nutritional screening and referral to Dietitian if MUST score 2 or above or as per locally
        agreed guidelines. Consider use of nutritional supplements and Dietetic referral if
        patient requires enteral or parenteral nutrition support.


Treatment


       Functional and neurological assessment to include motor/sensory impairment, mobility,
        exercise tolerance, balance and limb function, abnormal muscle tone and the provision
        of splints where necessary
                                                                                                                17
      Assess for joint range and deformities, seating and posture.
      Wheelchair assessment, home risk assessment and discharge planning
      WHO classification of Functioning Framework
      Plan anxiety management, relaxation and sleep programmes
      Help patients to explore body image, self esteem and sexuality issues.
      Teach methods for secretion clearance, supported cough and breathing exercises and
       tracheostomy care if appropriate
      Interoperative language assessment for “awake” craniotomy patients and
       communication and swallowing assessment if appropriate
      Provide ongoing monitoring and equipment to support and maintain patient’s
       independence in all activities of daily living
      Provide advice on managing mobility to patient and carers and set goals
      Fulfil key worker role if appropriate
      Nutritional screening and referral to Dietician if MUST score 2 or above or as per locally
       agreed guidelines.
      Assess nutritional requirements, including use of supplements, possible further
       treatment and ability to act on advice.
      Consider alternative methods of nutritional support including texture modification
       where relevant. Dietetic referral if patient requires enteral or parenteral nutrition
       support.
      Onward referral to rehabilitation or palliative care services

      Attend MDT meetings, provide strategic case management and liaise with regards to
       functional status and QOL.
      Voice and swallowing if tracheostomy in situ
      Vocational rehabilitation and advice on return to work
      Rehabilitation of activities of daily living & cognition
      Advice on energy conservation techniques




Post Treatment

      Anxiety management programmes, cognitive rehabilitation, ongoing mentoring and
       support to patient and carers
      Plan anxiety management strategies and help patients to deal with cognitive and
       perceptual dysfunction
      Provide equipment and environmental assessment as required
      Nutritional screening and referral to Dietician if MUST score 2 or above or as per locally
       agreed guidelines.
      Assess nutritional requirements, including use of supplements. Consider alternative
       methods of nutritional support including texture modification where relevant. Dietetic
       referral if patient requires enteral or parenteral nutrition support.
      Refer to appropriate rehabilitation services
      Manage seating and postural issues

                                                                                                    18
      Provide neurological goal orientated rehabilitation to improve function/QOL
      Implement memory strategies
      Communication and swallowing assessment if appropriate




Monitoring and Survivorship


      Complete holistic assessment, including social psychological, functional, cognitive, and
       perceptual areas
      Undertake environmental assessment relating to need for compensatory or adaptive
       aids, returning to work and functional status
      Engage patient in anxiety management and relaxation programme if appropriate
      Help patients to explore their feelings around body image, self esteem and sexuality
      Review speech and language skills
      Promote health and advice on exercise
      Provide ongoing patient and carer support and information
      Splint to prevent deformity and control pain
      Wheelchair and seating assessment
      Carer retraining for manual handling
      Nutritional screening and referral to Dietician if MUST score 2 or above or as per locally
       agreed guidelines.
      Assess nutritional requirements, including use of supplements. Consider alternative
       methods of nutritional support including texture modification where relevant. Dietetic
       referral if patient requires enteral or parenteral nutrition support
      Respond to support group information needs on completion of treatment
      Refer to community/primary care teams & specialist neurological teams to ensure
       smooth flow of treatment
      Allocate key lead AHP professional rehab co-ordinator
      Link to support groups
      Assess home environment and establish plans and realistic goals with patient and
       carers.
      Help with feeding, eating, self care, washing, dressing and access issues.
      Manage somnolence and support patients to re-engage in social activities and work
       place




Palliative Care

                                                                                                    19
   Undertake a holistic assessment to include function, cognitive ability, assessment of
    QOL, anxiety, depression and social needs.
   Ongoing feedback to MDT about symptoms such as pain, breathlessness, fatigue,
    depression and low mood
   Implement communication strategies to optimise ability to communicate
   Advice on pacing, relaxation and controlled exercise
   Provision of aids and equipment to optimise function, including wheelchair assessment,
    pressure cushions, beds and hoists.
   Education and support to patient, families and carers
   Assess mobility, muscle strength and potential risks
   Nutrition screening, as appropriate, with referral to Dietician if MUST score of 2 or
    above, or as per locally agreed guidelines. Dietetic referral if patient requires enteral or
    parenteral nutrition support.
   Non pharmacological pain management
   Help patient to manage lifestyle and pursuit of meaningful hobbies including driving.



End of Life

   Provide ongoing psychological support with regards to adjusting to loss, deteriorating
    function and grief response.
   Maximise communication ability and management of dysphagia.
   Provision of aids for safe moving and handling whilst function deteriorating
   Energy conservation techniques, goal planning, pacing and anxiety management
   Attend case conferences to plan complex discharges
   Prevent complications of inactivity and provide respiratory and airway management
   Provide advice regarding dietary adaption to optimize nutritional intake, support
    regarding issues related to reduced ability to eat and drink, liaison regarding withdrawal
    of feeding if/when appropriate




                                                                                                   20
10.0 The Presentation Pathway

Urgent referral guidelines for suspected cancer (2 week rule)

The National Institute for Health and Clinical Excellence (NICE) Referral guidelines for suspected cancer
(Clinical Guideline 27 June 2005) document details the referral criteria for patients who present with
symptoms suggestive of Brain & CNS cancer to a team specialising in the management of brain and central
nervous system tumours, depending on local arrangements.

General recommendations

    A patient who presents with symptoms suggestive of brain or CNS cancer should be referred to an
     appropriate specialist, depending on local arrangements.

    If a primary healthcare professional has concerns about the interpretation of a patient’s symptoms
     and/or signs, a discussion with a local specialist should be considered. If rapid access to scanning is
     available, this investigation should also be considered as an alternative.

Specific recommendations

    In patients with new, unexplained headaches or neurological symptoms, the primary healthcare
     professional should undertake a neurological examination guided by the symptoms, but including
     examination for papilloedema. The absence of papilloedema does not exclude the possibility of a
     brain tumour.

    In any patient with symptoms related to the CNS (including progressive neurological deficit, new-
     onset seizures, headaches, mental changes, cranial nerve palsy, and unilateral sensorineural
     deafness) in whom a brain tumour is suspected, an urgent referral should be made. The development
     of new signs related to the CNS should be considered as potential indications for referral.

Headaches

    In patients with headaches of recent onset accompanied by either features suggestive of raised
     intracranial pressure (for example, vomiting, drowsiness, posture-related headache, headache with
     pulse-synchronous tinnitus) or other focal or non-focal neurological symptoms (for example,
     blackout, change in personality or memory), an urgent referral should be made.

    In patients with unexplained headaches of recent onset, present for at least 1 month but not
     accompanied by features suggestive of raised intracranial pressure (see recommendation 1.12.5)
     discussion with a local specialist or referral (usually non-urgent) should be considered.

           In patients with a new, qualitatively different unexplained headache that becomes
            progressively severe, an urgent referral should be made.




                                                                                                         21
              Re-assessment and re-examination is required if the patient does not progress according to
               expectations.

Seizures

     A detailed history should be taken from the patient and an eyewitness to the event if possible, to
      determine whether or not a seizure is likely to have occurred

     In patients presenting with a seizure, a physical examination (including cardiac, neurological, mental
      state) and developmental assessment, where appropriate, should be carried out.

     In any patient with suspected recent-onset seizures, an urgent referral to a neurologist should be
      made.

Other neurological features

     In patients with rapid progression of:

                  Sub-acute focal neurological deficit
                  unexplained cognitive impairment, behavioural disturbance, or slowness or a combination
                   of these
                  personality changes confirmed by a witness (for example, a carer, friend or a family
                   member) and for which there is no reasonable explanation even in the absence of the
                   other symptoms and signs of a brain tumour an urgent referral to an appropriate specialist
                   should be considered.

Risk factors

     In patients previously diagnosed with any cancer an urgent referral should be made if the patient
      develops any of the following symptoms:

          recent-onset seizure
          progressive neurological deficit
          persistent headaches
          new mental or cognitive changes
          New neurological signs.




                                                                                                            22
                                                                                Central South Coast
                                                                                              Cancer Network

   DRAFT BRAIN and CENTRAL NERVOUS SYSTEM
                    Pathway                                                                         62 Day Cancer Pathway


                                    Symptomatic Patient



     Patient presents in A&E                                        Patient goes to GP



          Admitting team                                  GP admits patient/ refers patient to appropriate
                                                         specialist (using 2 week proforma as appropriate)




CT Scan (or MRI) with and without contrast                          Consultant appointment


         Consultant appointment                          CT Scan (or MRI) with and without contrast              14 Days




                                      Tumour diagnosed


                                 MRI, CXR, bloods and LFTs                                         CT chest/ abdo/
                                                                                                    pelvis, tumour
                                                                                                       markers
                                Primary tumour                   Secondary tumour



                                                                                                   Tissue diagnosis
             Neuroscience neuro-oncology Multi Disciplinary
                                                                          Via site specific MDTs     from primary
                                Team
                                                                                                    where possible



                             Surgery indicated?




                 yes                                      no



          Biopsy/resection                            RT/ chemo
                                                      indicated?

                       histology

                                                 Local oncology clinic/                             Palliative care or
                                                                                      no
        Neuroscience neuro-                          MDT review                                       surveillance
          oncology MDT

                                                          yes


                                                                                                                 62 Days
                                                    Radiotherapy/
                                                    chemotherapy



                                                  Tumour recurrence
                                                    or progression




                                                                                                                            23
                                                                                      Central South Coast
                                                                                              Cancer Network


                                     DRAFT pathway for glioma

                                    Patient with suspected brain tumour



                                Neuroscience neuro-oncology Multi Disciplinary
                                                   Team



                                                 MRI likely glioma?



                                                                                          Treat according to tumour
                                     yes                                    no
                                                                                                    type


                        Tumour operable and surgery
                                 indicated


                                                                                              Palliative care or
                                    yes                                     no
                                                                                                surveillance




Possible to resect >90%                     Not possible to resect >90%
& ventricle not wide open                   or ventricle wide open
& specialist neurosurgeon (PG/JD)           or non- specialist neurosurgeon
& frozen section HGG                        or frozen section not HGG




       Insertion of gliadel
                                                           no gliadel




                                                 Neuroscience neuro-oncology
                    Histology
                                                   Multi Disciplinary Team




                                                       Histology = GBM



                                                                                               Treat according to tumour
                                           yes                                   no
                                                                                                         type




                  Age <70 & PS 0 or 1               Age >70 or PS 2/3/4




                  RT + temozolomide                 RT or palliative care




                                                                                                                           24
11.0 The Diagnostic Pathway and staging

11.1 Imaging Pathway for Adult Primary Brain Tumour

Initial suspicion/diagnosis of primary brain tumour is often made on CT:
 - images before and after intravenous iodinated contrast should be obtained (unless contrast
      is contraindicated)

MRI is the investigation of choice and should be performed in all cases unless contraindicated:
 - imaging in all 3 planes should be acquired
 - T1 weighted images both pre and post a gadolinium-based contrast agent should be acquired
    in at least one identical plane (additional post-gadolinium T1 weighted images may be
    acquired in other plane/s)
 - Diffusion weighted imaging can be useful in differentiating tumour from infarct and
    cystic/necrotic tumour from abscess
 - a suggested imaging protocol is given below
 - additional sequences may be required to aid treatment planning (eg: Volume image sets for
    image-guided surgery, MRV, MRA, Spectroscopy)
 - variations to the standard brain protocol are required for lesions in specific locations (eg:
    sellar, parasellar, cerebello-pontine angle, pineal)

The differential diagnosis of an intracranial lesion often includes metastatic disease and in most
cases a CT of chest, abdomen and pelvis should be obtained (if metastasis is suspected-not all
cases).

Imaging should be completed within 2 weeks and in general referral is best made to the MDT once
imaging is complete.

Imaging
Diagnostic CT/MRI

Postoperative scans during admission as dictated by the clinical progress of the patient

Planning CT scan, prior to radiotherapy.


Availability of urgent scanning for symptomatic patients within 10 working days of reporting
symptoms to the oncologist.


 Standard MRI Brain tumour protocol:

 Sagittal T1
 Axial T2/dual echo
 Coronal FLAIR
 DWI
 Axial or Coronal T1
 Axial T1 + Gad
 Coronal T1 + Gad


                                                                                               25
11.2 Imaging Pathway for Meningioma:

Initial imaging may be with CT or MR

CT: - images before and after intravenous iodinated contrast should be obtained (unless contrast is
contraindicated)
 - Images should also be produced with a bone algorithm to identify any underlying bony
      involvement

MRI: - is the investigation of choice and should be performed in all cases unless contraindicated:
 - imaging in all 3 planes should be acquired
 - T1 weighted images both pre and post a gadolinium-based contrast agent should be acquired
    in at least one identical plane (additional post-gadolinium T1 weighted images may be
    acquired in other plane/s)
 - a suggested imaging protocol is given below
 - additional sequences may be required to aid treatment planning (eg: Volume image sets for
    image-guided surgery, MRV)
 - variations to the standard brain protocol are required for lesions in specific locations (eg:
    parasellar, sphenoid wing, other skull base locations, cerebello-pontine angle)

If imaging characteristics are unusual, a differential diagnosis including dural metastasis may be
considered and a CT of chest, abdomen and pelvis should be obtained.

 Standard MRI Meningioma Brain tumour protocol:

 Sagittal T1
 Axial T2/dual echo
 Coronal FLAIR
 Axial or Coronal T1
 Axial T1 + Gad
 Coronal T1 + Gad




                                                                                                26
11.3 Imaging Pathway for Brain Metastases
All patients with a previous history of malignancy and symptoms and signs suggesting intracranial
disease should initially be imaged with CT or MRI

CT: - images before and after intravenous iodinated contrast should be obtained unless contrast is
contraindicated
If multiple lesions are present, CT may provide sufficient information.

MRI: - is the investigation of choice and should be performed in all cases unless contraindicated,
(with exceptions noted above) as it has greater sensitivity for detection of small lesions.
 - imaging should include sequences in all 3 planes
 - T1 weighted images should be obtained both pre and post contrast in at least one identical
     plane with further post contrast T1 weighted images in additional plane/s
 - a suggested imaging protocol is given below
 - additional sequences may be required to aid treatment planning (eg: Volume image sets for
     image-guided surgery, MRV, MRA, Spectroscopy)

A CT of chest, abdomen and pelvis should be obtained to determine the contemporaneous
systemic tumour burden.

Imaging should be completed within 2 weeks and in general, referral is best made to the MDT
once imaging is complete

 Standard MRI Metastatic Brain tumour protocol:

 Sagittal T1
 Axial T2/dual echo
 Coronal FLAIR
 DWI
 Axial or Coronal T1
 Axial T1 + Gad
 Coronal T1 + Gad




                                                                                               27
11.4 Pathology, Tumours of the Central Nervous System, Neuropathology and Background

This document covers neuropathological assessment of intra-axial tumours of the CNS, including
those arising in the brain and spinal cord. Similar issues apply to extra-axial tumours, arising from
the coverings of the brain and spinal cord. All of these lesions impinge on the CNS and tend to be
dealt with by neurosurgeons in specialist Neuroscience Centres and their pathology is generally
dealt with by neuropathologists.
Reference is made to the following documents.
1. NICE. Improving outcomes for people with brain and other CNS tumours. Guidance on Cancer Services
   (www.nice.org.uk).
2. Standards and Datasets for reporting cancers. Dataset for tumours of the central nervous
   system (2nd edition), The Royal College of Pathologists (www.rcpath.org).
The main functions of neuropathological analysis of a neurosurgical biopsy in this context are as follows:
1. To define the biopsy tissue as abnormal.
2. To define the abnormality as neoplastic or reactive in nature (if reactive, the nature of the reactive
   process).
3. If neoplastic then to achieve a diagnosis, including subtype and grading where appropriate, according to
   the current WHO Classification of Tumours of the Nervous System.


Accurate and standardised histopathological data in diagnostic reports of CNS tumours are
important for the following reasons:
1. Standardised classification and grading of tumours according to the WHO classification is
   necessary for planning of appropriate treatment for patients and allowing determination of
   prognosis.

2. Consistency of pathological reporting is important in communication between cancer centres.

3. Monitoring of treatment and outcomes and in clinical audit.

4. Provision of data for epidemiological studies, for monitoring of disease patterns and trends,
   and determination of changing outcomes and survival.

5. Allowing appropriate stratification of patients for entry into clinical trials and allowing
   meaningful comparison between biological research studies.

6. Provision of accurate data for cancer registries, in particular the NHS Cancer Data Set.

Pathology Reports
CNS tumours should be reported by a neuropathologist. NICE guidance defines a neuropathologist
as “an accredited pathologist who is registered as a neuropathologist or histopathologist with
specialist expertise in neuro-oncology and takes part in the National External Quality Assurance
(EQA) scheme for neuropathology organised by the British Neuropathological Society”. NICE
guidelines also emphasise the central role of the MDT meeting in the management of CNS
tumours and pathologists reporting CNS tumours should attend and contribute to these meetings.




                                                                                                             28
Site Specific Issues in Relation to CNS Tumours

The staging of tumours and assessment of resection margins, essential information for many
tumour types, is not in general applicable to CNS tumours for a number of reasons. These include
the fragmented state of many biopsy specimens, precluding any systematic assessment of the
margins. In lobectomy specimens, assessment of apparent involvement of margins by tumour
may be possible, however, in most intra-axial tumours, particularly gliomas, the diffuse pattern of
infiltration effectively precludes total surgical resection and infiltrating tumour cells are present in
apparently normal brain tissue surrounding these lesions, from which recurrences may arise.

The extent of tumour resection is a predictive value for many CNS tumours. It is therefore of value
to record an approximate aggregate size of tumour removed as an indicator of the sample on
which the diagnosis has been based. However, it should be noted that not all of the resected
tumour may reach the Pathology Department, depending on the neurosurgical techniques
employed, and the estimate of the pathological specimen volume may therefore underestimate
the true extent of resection in many cases.

CNS tumours generally progress through local growth and excision with extra-cranial metastases
being very rare. Staging of CNS tumours, using criteria employed for non-CNS tumours (e.g. TNM
classification) is not relevant. CNS tumours can however be staged by other criteria, for example,
neuro-radiological evidence of metastasis to other regions of the CNS via the CSF pathway.

Histological assessment of CNS tumours may document patterns of spread, particularly across
tissue boundaries, e.g. across the pia mater into the subarachnoid space.

For extra-axial tumours, histological assessment of the tissues within which the tumour is located
may be relevant. For example assessment of the brain/tumour interface is important.

It should be emphasised that there is a need for an adequate amount of tissue to be submitted to
Neuropathology if a reliable diagnosis, based on representative material, is to be made. This may
be a particular problem with increasingly small biopsies obtained stereotactically or
endoscopically. If a specimen is felt to be inadequate for a reliable evaluation, this should be
stated in the report and discussion at the MDT meeting provides a further opportunity for
evaluation of specimen adequacy.

Clinical Information Required on the Request Form

Clinical details are provided by the submitting clinician on the request form. Clinical history is very
valuable, and sometimes essential, to ensure proper interpretation of the histological findings.
This should include:
1. Type of specimen/procedure – biopsy (stereotactic or open) or resection.

2. If multiple specimens are submitted representing different areas, this should be recorded.

3. Previous relevant diagnoses, biopsies or therapies should be noted.           Radiotherapy,
   radiosurgical interventions and systemic chemotherapy may considerably modify appearances,
   and for gliomas present difficulties in the interpretation of the histological findings and

                                                                                                     29
   assignment of tumour grade. Pre-operative embolisation of meningiomas may produce
   necrosis and may affect tumour grading if this information is not known.

4. The site of the tumour and neuroradiological findings. Because of the nature of most
   neurosurgical specimens, the neuropathologist does not often have the benefit of a good
   appreciation of the macroscopic appearance of the lesion. Neuroradiological findings thus
   provide information helpful in diagnosis and provide an alert to discrepant diagnoses; for
   example the presence of radiological contrast enhancement in a low grade diffuse glioma.

5. Duration and nature of symptoms.

Preparation of the specimen before dissection

Most specimens are received in formalin and should be in an adequately sized specimen pot.
Depending on the size of the specimen up to 24 hours fixation may be required before dissection.

Submission of fresh tissue is necessary in cases for which intra-operative diagnosis is requested.

If it is likely that genetic analysis may be useful fresh tissue is required so that it can be frozen.

Where it is suspected that examination by electron microscopy may be required a sample of the
tumour should be fixed in glutaraldehyde.

Bony and heavily calcified specimens may need prolonged decalcification following fixation and
prior to processing.

Where possible and approved, frozen material should be archived and the availability of frozen
tissue recorded, as it may allow future molecular genetic studies for diagnostic or research/clinical
trial purposes, subject to appropriate ethical constraints, consents and government mechanisms.
In addition to local research initiatives, this will become more important with time as national
initiatives for adult and paediatric brain tumours develop.

For an increasing range of tumours, conventional histology may be supplemented by molecular
genetic or cytogenetic analysis. Fresh tissue needs to be treated appropriately, for example by
freezing or transportation to a Cytogenetics laboratory in the appropriate medium.

Specimen Handling and Block Selection

Macroscopic Description

The specimen should be measured in three dimensions and, if very large, weighed. In many cases,
specimens will be in the form of multiple fragments, but an aggregate measurement should be
taken. The specimen should be described fully, including recognisable anatomical structures,
colour, consistency, distance from resection margin and the presence of calcification, necrosis,
haemorrhage or cystic change noted.




                                                                                                         30
Biopsies should usually be embedded in their entirety for processing.

Deeper levels should be considered to increase the sampling.

Intra-axial tumour resections, including lobectomy specimens.
Where the possible the specimen should be orientated and any anatomical structures identified.
Lobectomy specimens may be sliced at approximately 5mm intervals, generally perpendicular to
the long axis of the specimen and through the pial surface. The tumour should be described with
particular attention to foci of necrosis, which may be of prognostic significance. Gross extension
of tumour into leptomeninges or to resection margins should be noted.

Approximate measurement of tumour size in three dimensions should be given.

Distance from resection margins should be measured as far as possible and sampled, recognising
that this may not be meaningful for diffuse gliomas.

Multiple blocks should be taken to allow for adequate sampling as intra-axial tumours are often
heterogenous.

Extra-Axial Tumours
The tumour should be orientated and measured, together with the distance to the nearest
resection margin, where appropriate.

The tumour should be sampled generously.

Blocks should include not only tumour, but also the brain interface, dura and radial margin.

Bone samples and accompanying soft tissue should be sampled for histology to assess potential
infiltration.

Tissue processing
Fixed tissue sampled for histology is processed to paraffin wax. Sections are cut and stained
according to standard laboratory procedures.

The first histological assessment of a tumour is performed on haematoxylin and eosin (H&E)
stained sections. Deeper levels should be obtained as required. Immunohistochemical
investigations are increasingly used for tumour classification and for prognostic information and
special (tinctorial) stains may be required in certain circumstances.

Histological Classification
Primary tumours of the nervous system are classified and graded according to WHO grading
scheme. [Louis DN et al. WHO Classification of Tumours of the Central Nervous System 4 th Edition.
Lyon: IARC, 2007.]
The scheme is used in all Neuropathology centres in the UK and its classification and grading
schemes for tumours are endorsed by the British Neuropathological Society and its National EQA
scheme. The scheme is also widely used internationally, allowing comparison of data from
European and North American status centres.


                                                                                               31
Additional and prognostic predictive factors

Assessment of cell proliferation by Ki-67 (MIB-1) immunostaining can be valuable in a number of
ways including: assessing tumours at grade borderlines, identifying areas in which mitotic figures
may be sought, and for ready display of proliferative rate at MDT meetings. However,
reproducible cut off values for diagnostic categories have not been established and a formal Ki-67
labelling index count, markedly affected by tumour heterogeneity and sampling, may be pursued
at the discretion of the pathologist.

Molecular and cytogenetic markers

Cytogenetic and molecular genetic analysis of tumours has made considerable inroads into an
improved understanding of the pathogenesis of brain tumours and contributing towards better
classification of brain tumours. Those which are currently in widespread use include:

Loss of heterozygosity (LOH) of chromosomes 1p and 19q in oligodendrogliomas can provide
information relating to prognosis and treatment response additional to that obtained by classical
histopathology. LOH 1p and 19q can be demonstrated by a number of techniques including PCR
based methods, FISH and classical cytogenetics.

Recent evidence has emerged to indicate that testing of glioblastomas for MGMT status is of
predictive value for treatment with alkylating agents such as temozolamide. MGMT is a DNA
repair enzyme that can repair the damage induced by chemotherapeutic alkylating agents. In
some glioblastomas, MGMT is inactivated by methylation of its promoter. Detection of MGMT
promoter methylation may therefore predict responses to temozolamide treatment whilst
absence of methylation predicts resistance.

The final report should include a date of report and SNOMED codes for statistical purposes.

Intra-operative Diagnosis

Intra-operative diagnosis, using frozen sections and/or smear preparations, shows good prediction
of final histology. However when the samples are small, (e.g. stereotactic biopsies) this procedure
may use up precious tissue and in the current imaging era the evidence for the benefit of the
technique is limited. It may be useful in certain circumstances and NICE recommends its
availability in Neurosurgical centres. It should be noted however that final diagnosis, treatment
planning and patient counselling should be based on the final report of the paraffin histology. Any
diagnostic information present in the intra-operative preparation should be included in the final
analysis. The fact of, and the result given from, intra-operative diagnosis should be recorded.


It should be noted that this service requires the continuous availability of a neuropathologist and
laboratory technician during laboratory hours. The service is currently available out of hours (i.e.
at night and weekends) as continuous cover is provided by a Cellular Pathology Department
Consultant rota, although the on-call Pathologist will not usually be a Neuropathologist.
The time interval between taking a sample in Theatre and phoning of the result back to Theatre
currently takes in the region of 30 minutes. If identified as a priority this time could be reduced
substantially by taking a number of measures including forewarning of the laboratory and/or
pathologist, rapid and secure transportation to Specimen Reception, Level E, and if appropriately
                                                                                                 32
resourced, possibilities also include performing intra-operative diagnosis with dedicated space;
staff another resources next to the Neurosurgical Theatre.
Timeline for Paraffin Histology
Day 1 – Fix in formalin.


Day 2 – Process for paraffin histology (overnight).


Day 3 – Cut paraffin sections. Stain with H&E, HVDG reticulin.


Day 4 – Immunohistochemistry as required.


Quality Control
Quality control at multiple steps in the process is essential to ensure accurate and appropriate
tumour classification. These include:


       Appropriate use of immunohistochemistry controls.


       Laboratory CPA accreditation.

       Participation in the Neuropathology Technical Immunocytochemistry External Quality
        Assurance Scheme (UK NEQAS).

       Participation of Pathologists in the Diagnostic External Quality Assurance Scheme scheme
        (UKNEQAS) – www.ukneqas.org.uk

Resources
Appropriate laboratory and Pathologist staffing.
Appropriate laboratory equipment, microscopes and MDT meeting facilities.
A laboratory IT system with appropriate administrative and secretarial support.
An appropriate consumables budget.
Timely and secure transportation of specimens to the Pathology laboratory is essential,
particularly important for intra-operative diagnosis.


Prof. J. A. R. Nicoll
Professor of Neuropathology
18.0.2008




                                                                                             33
12.0 Agreed Treatment Pathways and Clinical Guidelines

12.1 Primary disease

Section 8: Clinical guidelines for the management of high grade gliomas (HGG) and Low grade
gliomas (LGG)


       High grade gliomas (HGG)
         Glioblastoma multiforme, gliosarcoma, gliomatosis cerebri, anaplastic astrocytoma,
         anaplastic oligoastrocytoma and anaplastic oligodendroglioma


Initial treatment
“The main aim of treatment and follow up are to increase survival while maximising a patient’s
functional capability and quality of life, and to ensure ready and timely access to appropriate
supportive care for patients, their relatives and carers”
While overall prognosis from HGG is poor there is considerable variation and it has been possible
to identify prognostic groups. This can guide decision making for clinicians and patients.
       Surgery – There are no randomised trials to direct management but there is an association
        between extent of resection and prolonged survival. The aim of surgery is to
        macroscopically resect where possible without leaving physical or mental disability.
        Carmustine implants should be considered for those patients where 90% or over of the
        gross tumour has been resected.

       If a tumour is deemed inoperable, a tissue diagnosis via image guided biopsy should be
        performed for all patients considered potentially suitable for radical treatment, and in any
        patients when diagnosis is uncertain. There may be some patients where MRI diagnosis of
        HGG is certain and radical treatment is not possible (due to age, performance status) when
        the MDT may not recommend biopsy.

       Chemoradiation with concurrent and adjuvant Temozolomide – Patients with glioblastoma
        multiforme and WHO PS 0-1. There is currently no evidence from randomised trials to
        show efficacy for this approach in patients with grade 3 gliomas and there are concerns
        over this regimens long term toxicity. Patients with grade 3 gliomas should only be offered
        chemoradiation as part of a randomised trial.

       Radical radiotherapy – patients with grade 3 gliomas or grade 4 gliomas unsuitable for
        chemo-rt but of good PS

       Palliative radiotherapy – Patients unsuitable for radical treatment.


       Best supportive care - Poor PS, cognitive impairment or patient choice. Where prognosis
        or patient quality of life are poor it may be more appropriate to provide palliation and
        support without active treatments.




                                                                                                 34
Adjuvant chemotherapy has been associated with a modest survival benefit after radical
radiotherapy and may be considered for some patients.


Recommended radiotherapy regimens


Chemo-radiation                      55-60Gy/30#/6wks
Radical radiotherapy          55-60Gy/30#/6wks
RT will be CT planned with conformal fields according to departmental protocols.
Palliative radiotherapy              30Gy/6#/2wks
                                     36Gy/12#/2.5 wks


12.2   Treatment at relapse
       (all patients to be re-discussed at neurosciences MDT)


      Surgery - Consider resection if recurrence is accessible.


      Chemotherapy – Nitrosurea based chemotherapy (PCV) may provide palliation in
       appropriately selected patients. Response rates for anaplastic astrocytomas and
       glioblastomas are only about 10-30% and there is no survival advantage.
       Oligodendrogliomas and to a lesser extent oligo-astrocytomas have higher response rates
       of between 30-60%. NICE guidance recommends Temozolomide for suitable patients who
       progress on nitrosurea based chemotherapy.

12.3 Chemotherapy guidelines

Concurrent and adjuvant Temozolomide


75mg/m2 daily for 7 days per week with radiotherapy with PCP prophylaxis
1st adjuvant cycle 150mg/m2 D1-5 4 wk cycle
Subsequent cycles 200mg/m2 D1-5 up to a maximum of 6 cycles


Palliative chemotherapy at recurrence


PCV                           6-8 weekly cycle for 4-6 cycles
Procarbazine                  100mg/m2               D1-D10
Lomustine (CCNU)              100mg/m2               D1 only
Vincristine                   1.4mg/m2               D1 only       (max. of 2mg)



                                                                                           35
Second line chemotherapy


Temozolomide 150mg/m2 D1-D5 for first cycle and 200mg/m2 D1-D5 for subsequent cycles to a
maximum of 6 cycles (NICE guidance)

Low Grade Glioma
Prognosis from LGG is variable with the histological characteristics being the most important
determining feature. All patients should be considered for biopsy or resection by the
neurosciences MDT and the options presented to the patient for discussion in clinic. Some
patients may choose to select surveillance imaging protocol alone.
      Surgery – Considered as an option both for tissue diagnosis and to improve prognosis or
       symptoms
      Radiotherapy - Evidence from a well conducted randomised trial has shown an increase in
       progression free survival but not for overall survival in those patients treated with early
       radiotherapy (at diagnosis) compared with patients treated at clinical or radiological
       progression. Early radiotherapy is associated with a higher risk of late complications.

Indications for treatment
       1.     Clinical or radiological progression.
       2.     High grade transformation
       3.     Gemistocytic histology
       4.     Patients with adverse risk factors ( age>40yrs, largest diameter
              >6cm, tumour crossing midline, astrocytoma histology,
              neurological deficit )


       Dose                  50.4Gy/28# over 6 weeks


      Chemotherapy – May be considered for patients with recurrence after surgery and
       radiotherapy. Patients should be discussed with the neurosciences MDT to discuss further
       resection. Likely to be of more benefit to those patients with oligodendroglial components
       to their tumour.




                                                                                               36
12.4 Meningioma Pathway
                    History & imaging consistent with meningioma


                    MRI brain (unless contraindicated)
                    Rule out metastatic disease – clinical/CXR/bloods


           Non-skull                                                    Skull base

 Neurosciences neuro-oncology MDTM                                         Skull base MDTM


                                  Treatment indicated?
                           no             yes >3cm         yes       <3cm
        Observation/surveillance          Surgery                    Surgery or SRS


                           Discuss all options with patient in OPD




      SURVEILLANCE                       SURGERY                        RADIOSURGERY

         3/12                       Non-skull base – PG/JD                   Sheffield
         1 year                     Skull base – DAL/ES/NVM                  London
         2 years                                                             Bristol
         3 years
         5 years
         10 years                   Histology reviewed in MDTM
         15 years

                             WHO grade I                  WHO grade II/III
                                                          Consider RT


                                Simpson I/II              Simpson III/IV
                                                          Consider SRS


  Progression/recurrence




                                                                                             37
Meningioma Pathway

Patients presenting to their local hospitals with the clinical symptoms and signs and imaging
findings consistent with a diagnosis of meningioma should all undergo an MRI scan of the brain
unless this is contraindicated. Clinical examination routine blood tests including a full blood count,
liver function tests and chest x-ray should be performed to rule out primary malignant disease
elsewhere.

Initial management

For patients with symptomatic cerebral oedema, dexamethasone may be prescribed along with a
proton pump inhibitor. In patients presenting with seizures, appropriate anticonvulsants, such as
phenytoin, should be prescribed. Emergency advice concerning the management of patients with
symptomatic meningiomas may be obtained prior to the multidisciplinary team meeting from the
on-call neurosurgical registrar at the neurosciences centre at UHS.

Referral to multidisciplinary team meeting

Clinical features and imaging should be forwarded to the appropriate multidisciplinary team
meeting: for skull-based tumours this will be the skull base meeting and for all other suspected
meningioma as this will be the neurosciences MDT meeting. A discussion will take place in this
meeting to determine if treatment is indicated at this stage. If treatment is not indicated, for
example, for small lesions in asymptomatic patients or in elderly patients with significant
comorbidity, then an observation or surveillance policy may be adopted. If treatment is to be
considered, then for lesions greater than 3 cm in diameter, surgery is the only valid option. For
lesions less than 3 cm in diameter either surgery or stereotactic radiosurgery (LINAC or gamma
knife).

Management options

A suggested surveillance policy that would be suitable for the majority of patients is illustrated in
the flow chart. The frequency of the surveillance may be increased for atypical meningiomas or if
there has been an incomplete resection of a tumour or for other clinical reasons. Patient's with
skull base meningiomas requiring a specialist skull base approach should be seen and treated by
one of the designated skull base surgeons i.e. Ms Lang, Mr Mathad, or Mr Shenouda. All other
suspected meningiomas should be treated by a designated specialist neurooncology surgeon i.e.
Mr Grundy or Mr Duffill. Following surgical resection, histology should be reviewed in the
appropriate multidisciplinary team meeting and an ongoing management plan constructed.
Patient with a Simpson grade 1/2 resection of a WHO grade 1 meningioma should undergo
surveillance. For patients with a Simpson 3/4 resection of a WHO grade 1 meningioma,
stereotactic radiosurgery can be considered for the residual disease if less than 3 cm in diameter.
Patient's with WHO grade 2 or 3 meningiomas would usually be considered for radiotherapy.

Progression/recurrence

If progression or recurrence of a meningioma is demonstrated radiologically indication again be
discussed in the appropriate multidisciplinary team meeting. Ongoing management through the
pathway can then be reconsidered by the MDT.



                                                                                                   38
12.5 Pituitary Patient Pathway

              History, endocrinology or imaging consistent with pituitary adenoma
                        (including apoplexy and presentation with III palsy

                                     Full pituitary hormonal screen
                                     MRI pituitary – unless contraindicated
                                     VA/VFs

                          Visual failure?                     No        Refer to Neurosurgery via letter or
                                                                        fax

                                   Yes

  Refer to Neurosurgery via on-call SpR
  Admit urgently to WNC                                                          Prolactin raised?


                                                                                 Yes


                     Prolactin raised?                   Refer to local
                                                         Endocrinologist                             No
                                                         Start treatment (cabergoline
                      No                 Yes             or bromocriptine)



  Urgent surgery unless         Refer to local Endocrinologist
     contraindicated            Start treatment (cabergoline                     Refer to pituitary MDTM
                                or bromocriptine)
        Treatment failure
                                               Response to                                           OPD
                                               treatment
         Refer to pituitary MDTM                                   Surgery, radiotherapy or surveillance




                                                Follow-up:
                                   MRI: 5m, 12m, 24m, 36m, 48m, 60m
                                          Neurosurgery: OPD 6m
                                 Endocrine: 3-6 weeks at WNC then local
                             VA/VFs: post-op, 6m, yearly thereafter if indicated
                             MDTM after each scan or for recurrence/regrowth




                                                                                                              39
12.6 Cerebral Metastases pathway

Our review of all evidence currently available combined with our collective clinical experiences
leads us to advise that the following groups of patients should be considered as potential
candidates for surgical resection of cerebral metastases (excluding those with highly radiosensitive
tumours, eg small-cell lung carcinomas):

   1. For diagnosis (and palliation) in patients with suspected cerebral metastases without a
      tissue diagnosis or where the diagnosis is in doubt.
   2. As a life-saving procedure for patients with posterior fossa metastases with hydrocephalus,
      for metastases with acute intra-cerebral haemorrhage or with depressed conscious level
      (provided there is an reasonable chance of good quality survival and no obvious extensive
      progressive systemic disease)
   3. Selected patients with a >3cm single cerebral metastasis that is surgically resectable and in
      whom systemic disease is controllable or absent and who have a KPS of 70 or greater.
   4. As an option (to SRS) for patients with a <3cm single cerebral metastasis that is surgically
      resectable and in whom systemic disease is controllable or absent and who have a KPS of
      70 or greater.
   5. As an option in selected patients who have potentially resectable symptomatic progressive
      local solitary cerebral disease after failed primary treatment (eg WBRT/SRS/surgery)
      provided re-staging otherwise indicates controllable or absent systemic disease and KPS of
      70 or greater.

NB. Some patients, especially with large tumours or oedema, have KPS reduced <70 due to the
compressive effects of the lesion and may be judged likely by specialist MDT to achieve KPS>70
after surgical resection. In this situation these patients would also be considered as surgical
candidates provided they satisfy the criteria above.

There are rare circumstances where surgery might be indicated in the presence of 2 or 3
metastases, such as potentially curable tumours (eg germ cell) or where prognosis is otherwise
expected to be very good due to ability to control systemic disease for years (eg in some breast
cancer patients).


Stereotactic radiosurgery (using any technique) should be considered as an option for the
management of patients with cerebral metastases <3cm in diameter, as above.


Follow-up
Clinical follow-up by local tumour site specific MDT as indicated. Whole-brain radiotherapy
considered on an individual case basis by neurosciences MDT and local tumour site specific MDT.




                                                                                                   40
12.7 Emergency Surgical Intervention Policy

Clinicians to refer to care pathway for patients with newly diagnosed suspected brain tumours.

Referring clinicians should consult the on-call neurosurgery team in the following situations:

   1.   Patient has depressed conscious level
   2.   Patient is severely symptomatic with raised intracranial pressure
   3.   There is symptomatic hydrocephalus
   4.   Any concerns about imminent risk of neurological deterioration
   5.   Any concerns about diagnosis (especially possibility of abscess)
   6.   Any advice on the urgent management of significant symptoms caused by brain tumour

Emergency surgery is rarely indicated for patients with brain tumours. If this is considered,
wherever possible the on-call neurosurgery consultant should first discuss the case with a
dedicated neuro-oncology surgeon during normal working hours. The case should be referred on
to the next MDTM if safe to do so. Patients with symptomatic cerebral oedema almost always
improve with dexamethasone. Emergency surgery may be indicated for the following groups:

   1. Patient with depressed conscious level from large mass lesion/oedema/haematoma and
      not responding promptly to dexamethasone and/or mannitol
   2. Patients with acute symptomatic hydrocephalus due to tumour (rather than oedema that
      would likely be improved with dexamethasone)
   3. Patients in whom cerebral abscess can not be excluded on DWI MRI

12.8 Chemotherapy Algorithm generic measure for NSSG 11-1C-115k
These can be found on the website below:

http://www.csccn.nhs.uk/professionals/protocols.html

12.9 The TYACN Pathway for Initial Management 11-1C-116k
Brain Cancer in the TYA service age group is rare, but when it arises the patient will be discussed
on a case by case basis within the TYA MDT meeting.

12.10 The TY Pathway for Follow Up on Completion of First Line Treatment 11-1C-117k
Any deviation from the standard follow up pathway which is recommended by the TYA MDT will
be incorporated into the individual patients care plan.


13.0 The Follow Up Pathway

Post-treatment Primary Brain Tumour
Follow-up surveillance should be MRI and is likely to depend on the histology of the tumour,
patient symptoms and the extent of treatment undertaken. A post-treatment baseline scan is
useful 3 months after completion of therapy.

‘Baseline’ MRI scan 3 months after the end of radiotherapy/chemoradiotherapy. No further
scanning unless patient is encountering difficulty with obtaining permission to return to driving
(this will not be the case for most patients with high grade glioma)

                                                                                                      41
Follow-up for Meningioma:
Post-treatment imaging should be MRI, depending on location and histology, and interval between
scans will be determined by completeness of resection and histology

Follow-up for metastatic brain/CNS tumours:
After treatment (surgery/stereotactic radiosurgery/whole brain radiotherapy) imaging may be
obtained 3 months after completion of treatment to serve as a baseline. Alternatively, patients
may be managed expectantly and only be re-imaged if further symptoms develop.
CT or MRI may be used for follow-up imaging, but MRI should be obtained prior to consideration
of any further treatment.


13.1 Surveillance guideline

Suggested follow up regimen and investigations.

Surveillance – follow-up should be with MRI. The protocol used at diagnosis should be repeated
for follow-up to allow careful and accurate comparison. The interval between imaging is likely to
be determined by the tumour type (if known) and any previous changes.



13.2 Rehabilitation pathway




                                                                                              42
            CSCCN Brain CNS Rehabilitation Pathway – Peer Review Measure 11- IE-111v
     Clinical indication for referral to AHP services should be assessed via holistic assessment. Some of the interventions
     listed below could be carried out by a single profession or by a number of professions working together




Disease Stage                                                     Indication for Referral



Diagnosis and                               History of falls, fatigue, mobility, reduced function or respiratory
Care Planning                               problems. Seating and positioning. Communication and swallowing
                                            issues. Nutrition screening with referral to dietician if Malnutrition
                                            Universal Screening Tool (MUST) score of 2 or above, or as per locally
                                            agreed guidelines. Dietetic referral for patients requiring enteral or
                                            parenteral nutrition support


Treatment                                   Retention of secretions and care of trache. Reduced functional or
                                            neurological ability. Increased muscle tone.
                                            Wheelchair Ax and equipment provision.
                                            Nutrition screening and referral to dietician as per pre-diagnosis
                                            Cognitive issues



 Post Treatment

                                            Activities of daily living and provision of equipment. Mobility and
                                            reduced function.
                                            Nutrition screening and referral to dietician as per pre-diagnosis
                                            Co-ordinate neurological rehabilitation services


 Monitoring and
 Survivorship                               Goal setting around loss of function. Environment and seating
                                            assessment. Splinting.
                                            Nutrition screening and referral to dietician as per pre-diagnosis
                                            Refer to specialist neurological rehab teams.
                                            Vocational rehabilitation.

 Palliative Care
                                            Anxiety, reduced mobility, equipment requirement,
                                            fatigue, non-pharmacological pain management, lymphoedema
                                            Nutrition screening, if appropriate, and referral to dietician as per pre-
                                            diagnosis




   End of Life                              Anxiety management/fatigue
                                            Reduced mobility and deteriorating function.
                                            Dysphagia
                                            Airway compromise/retention of secretions                              43
                                            Nutritional requirements, issues related to reduced ability to eat and
                                            drink, withdrawal of feeding if/when appropriate
14.0 Area Wide Minimum dataset (MDS)

UHS has a minimum data set it follows for Brain and CNS patients. This not only covers data such
as waiting times but more specialised information as suggested by the National Brain Tumour
registry.


15.0 Area Wide Communication Framework

                                   Area Wide Communication Framework
        Events                         Actions                     Time frame          Communication
                          Patients with an initial imaging
     Diagnostics        diagnosis of a CNS tumour should     Within 1 week of the
                                                                                     Referrer to NSMDT
                        have been logged on to a dataset          image report
                                   of the NSMDT
                        That a clinical summary from the
                       clinician in charge of the patient at
       Referral                                              Within 2 working days
                        the time of the imaging diagnosis                            Referrer to NSMDT
                                                             of the imaging report
                        should have been received by the
                                       NSMDT
                          That a written summary of the
                                                                                        NSMDT to the
       NSMDT             proposed management plan be         Within 1 working day
                                                                                      referring clinician,
                         sent out from the NSMDT to the      of the MDT meeting
                                                                                       CNMDT and GP
                       referring clinician, CNMDT and GP.
                         Inpatient informed of diagnosis
                                                             Within 1 working day    Referring clinician to
                          and Management plan and Key
  Clinic Review with                                                of NSMDT                Patient
                                       Worker
        patient
                        Outpatient informed of diagnosis
                                                             Within 5 working days    Referring clinician
                          and Management plan and Key
                                                                    of NSMDT              to Patient
                                       Worker
   Discharge from       Referral from Neurosurgical care
                                                             Within 2 working days    Neurosurgical care
  Neurosurgical care     to CNMDT but in soton we have
                                                                   of discharge          to CNMDT
                           combined nsmdt and cnmdt
                                                             Within 1 working day    CNMDT to Palliative
    Ongoing care       Referral to Palliative care or rehab
                                                               of decision being      care and/or rehab
                                    from CNMDT
                                                                       made                 teams
                       That a referral back to the NSMDT
   Multidisciplinary
                            for further management of        Within 1 working day      Multidisciplinary
        Clinic
                         possible recurrence is sent back        of the decision       clinic to NSMDT
                         from the Multidisciplinary clinic




                                                                                                        44

				
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