brain tumour patient forum marina kastelan the role of the care coordinator and how they can help
DESCRIPTION
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.TRANSCRIPT
The role of the care coordinator and how they can help Sr. Marina Kastelan
Hosted by Cure Brain Cancer Foundation
NEURO ONCOLOGY CARE COORDINATION
MARINA KASTELAN NEURO ONCOLOGY CARE COORDINATOR SYDNEY NEURO ONCOLOGY GROUP, RNSH
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”
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
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
CARE COORDINATION FOR PATIENTS WITH PRIMARY BRAIN TUMOURS
Complex patients within a confusing pathway accessing
multiple modalities
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
2006
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
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
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
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
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, poor short 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
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
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
