Marina Kastelan, Neuro Oncology Care Coordinator, Sydney Neuro Oncology Group, RNSH presents at the Brain Tumour Patient Forum, hosted by the Cure Brain Cancer Foundation.

1. The role of the care coordinator and how they can help
Sr. Marina Kastelan
Hosted by Cure Brain Cancer Foundation

2. NEURO ONCOLOGY CARE
COORDINATION
MARINA KASTELAN
NEURO ONCOLOGY CARE COORDINATOR
SYDNEY NEURO ONCOLOGY GROUP, RNSH

3. CARE COORDINATION
Ø To enable an easy, supported pathway of
care for the patient, with improved & timely
access to services & health professionals
Ø “care is delivered in a logical, connected and
timely manner so that the medical and
personal needs of the patient are met”

4. Headaches
Nausea/Vomiting
Gait disturbance/Limb weakness
Speech changes – dysphasia
Personality/memory changes/confusion
Drowsiness
Change in vision/double vision/ loss of
peripheral vision
PRESENTATION

5. COMPLEX CASE MANAGEMENT
Complexities of Care in this tumour group:
o Potential for blood clots
o Seizures
o Brain swelling / oedema
o Neurocognitive & behaviour changes
difficult for the family
o Inability to return to work
o Inability to drive

6. CARE COORDINATION FOR PATIENTS
WITH PRIMARY BRAIN TUMOURS
Complex patients within a
confusing pathway accessing
multiple modalities

8. THE REGIONAL LANDSCAPE
Patients with cancer who live in rural and
regional areas can do worse than those
patients in metropolitan areas
Possibly due to: geographical isolation,
delayed diagnosis, inadequate transport, lower
socioeconomic status and workforce
shortages

9. 2006

10. COST OF BEING A
REGIONAL PATIENT
Travel – flight Griffiths return $400
Transport to/from Airport - $20 - $60 ea way
Accommodation - $70 - $200/ night
Food expenses whilst away
Lost income if carer still working
IPTAAS – 1/3 expenses reimbursed
Total = $600 for 1 episode

11. vs
FUNCTIONS AND ROLE OF NEURO ONCOLOGY
CARE COORDINATION/PATIENT PATHWAY:
HIGH GRADE GLIOMA PATIENT
New Diagnosis Phase: High Grade Glioma
Elective admission
Pre-admission clinic introduction/
education/ assessment
Emergency admission
Emergency OT
Stabilised on Dex’
Planned OT booked
Surgical Procedure
Biopsy, partial resection,
GTR
Post op Phase
Pathology reporting/
disclosure of diagnosis
Discharge planning –
confirmation of medical
referrals (eg radiation
oncology, medical
oncology etc)
Post Op MRI,
management of
seizures, change in
mobility, mood,
cognition, speech, ?
support upon D/C,
D/C destination
Post op
complications:
seizures, oedema,
Dex’ mgmt, BSL’s,
pain
Redo crani

12. vs
FUNCTIONS AND ROLE OF NEURO ONCOLOGY
CARE COORDINATION/PATIENT PATHWAY:
HIGH GRADE GLIOMA PATIENT
New Diagnosis Phase: High Grade Glioma
Elective admission
Pre-admission clinic introduction/
education/ assessment
Emergency admission
Emergency OT
Stabilised on Dex’
Planned OT booked
Surgical Procedure
Biopsy, partial resection,
GTR
Post op Phase
Pathology reporting/
disclosure of diagnosis
Discharge planning –
confirmation of medical
referrals (eg radiation
oncology, medical
oncology etc)
Post Op MRI,
management of
seizures, change in
mobility, mood,
cognition, speech, ?
support upon D/C,
D/C destination
Post op
complications:
seizures, oedema,
Dex’ mgmt, BSL’s,
pain
Redo crani

13. vs
FUNCTIONS AND ROLE OF NEURO ONCOLOGY
CARE COORDINATION/PATIENT PATHWAY:
HIGH GRADE GLIOMA PATIENT
New Diagnosis Phase: High Grade Glioma
Elective admission
Pre-admission clinic introduction/
education/ assessment
Emergency admission
Emergency OT
Stabilised on Dex’
Planned OT booked
Surgical Procedure
Biopsy, partial resection,
GTR
Post op Phase
Pathology reporting/
disclosure of diagnosis
Discharge planning –
confirmation of medical
referrals (eg radiation
oncology, medical
oncology etc)
Post Op MRI,
management of
seizures, change in
mobility, mood,
cognition, speech, ?
support upon D/C,
D/C destination
Post op
complications:
seizures, oedema,
Dex’ mgmt, BSL’s,
pain
Redo crani

14. Multi-disciplinary Team discussion
Facilitate referrals RT, med onc, rehabilitation
RT planning/ chemo education/ wkly bloods
Facilitate relevant allied health referrals -social work, clin psych, OT
Neuro-oncology Care coordinator – psycho social assessment / screening;
education/support/information
Support /facilitation of clinical trial participation as relevant
Disability Pension,
loss of income, loss
of license, vision
changes, change of
relationships
Poor cognition, poorshort term memory –NEED a carer
Treatment Phase
Start RT within 4 wks of surg
Short course/long course +/- chemo ORAL
Arrange post RT F/U/ imaging/ med onc
4 week break – high risk time for post treatment oedema ,
worsening of symptoms/seizures, headaches etc
Alerting healthcare providers of any relevant clinical issues
Treatment and follow-up phase
Commence Adjuvant chemo cycles – 6-12 months – monthly blood monitoring
including management of recurrent disease
Support / facilitation of further clinical trial participation as relevant
Coordination of care – medical, allied health appointments
Palliative Phase – facilitate pal care referrals, Medical & Comm
nursing, ACAT
Bereavement support to carers, as relevant
Further R/V at MDT,
possible further
surgery/ re irrad’n

15. The complexity of cancer diagnosis and treatment
and the broad range of settings in which care is
delivered, means that care can often be disjointed.
Patients often miss out on much-needed support
and sometimes become ‘lost’ in the system
v Patient navigator
v Educator
v Support provider/ point of contact
v Team coordinator
CARE COORDINATION
Clinical Oncological Society of Australia. [Internet] Care Coordination Workshop Report. Clinical Oncological Society of Australia;2008

16. CARE COORDINATION
o Minority of brain tumour patients have a CC
o Majority don’t
o CC can cover multiple tumour streams &
mixed groups of patients – any CC/CNC is
better than none at all