Transcript Brain Tumour Outcome Measures

BRAIN TUMOUR OUTCOME MEASURES
Amr Mohamed FRCS (Surg Neuro)
Surgical Neuro-oncology Fellow
North Bristol Trust
Introduction
■ In 2011 in the UK, 9400 new patients were diagnosed to have brain
tumour, that is 26/day.
■ 76% were under 75 years old.
■ The 4th group of cancers in the teenagers and young adults.
■ 34% astrocytomas and 21% meningiomas. 8 in 10 of the astrocytomas
are GBM.
■ Estimates suggest that secondary brain, other CNS and intracranial
cancers occur in at least 6% of all cancer patients, but this varies by the
site of the primary cancer.
“Cancer Research UK, http://www.cancerresearchuk.org/health-professional/cancerstatistics/statistics-by-cancer-type/brain-tumours#heading-Zero, Accessed November,
2015”
Introduction
■
Around a fifth (19%) of people diagnosed with brain cancer in England and
Wales survive their disease for five years or more (2010-11).
■
4 in 10 (40%) people diagnosed with brain cancer in England and Wales
survive their disease for one year or more (2010-11).
■
Brain cancer survival is highest for people diagnosed aged under 40 years
old.
■
6 in 10 people diagnosed aged 15-39 survive their disease for five years or
more, compared with less than 1 in 100 people diagnosed aged 80 and over.
■
Brain cancer survival is improving and has doubled in the last 40 years in the
UK.
■
In the 1970s, around 5 in 100 people diagnosed with brain cancer survived
their disease beyond ten years, now it's around 3 in 20.
“Cancer Research UK,http://www.cancerresearchuk.org/healthprofessional/cancerstatistics/statistics-by-cancer-type/brain-tumours#heading-Two, Accessed November,
2015”
High Grade Glioma Specialist Nurse Pathway
Seamless communication throughout the patients pathway with local & regional neuro-oncology treatment centres
TYA
SERVICE
16-24 YRS
Emergency
Surgery
Clinic
Appointment
Surgeon /
Oncologist or
CNS
Emergenc
y
NBT or
Other
Hospital
Treatment / Surveillance
Phase
Treatment Decision Phase
Diagnosis Phase
MDT and
PATH
MDT
GP
referrals
Palliative Care
Management
Oncology
Treatment
Radiotherapy
Chemotherapy/
Clinical Trials
Diagnostic
Meeting
Surgeon / CNS
Elective
Surgery
Biopsy or
Excision
Palliative Care
Management
Follow up Phase
Surveillance MRI
Scan
3 monthly
Post radiotherapy
and
Chemotherapy
Further
2nd Line
Chemotherapy
Radiological
Progression
/ MDT
REVIEW
Further
Surgery
Palliative
Care
Management
Telephone Clinic
Follow-up /
Support
Living Well Event
Health Needs Assessment(s)
Telephone Support
Professional Follow up
•
•
•
•
Patients awaiting surgery .
Patients will have remote monitoring
with surveillance scanning dictated
by consultants / MDT opinion.
Patients will be booked to Clinic to
review with MRI results.
Patients will be seen by Consultants
after their surgery, with the CNS to
discuss histology results and
treatment plans.
•
•
•
Monitoring of patient s with active
neurological problems – liaising with GP
and other Community Support Teams.
To discuss MRI results and MDT Outcomes
with the patient over the phone.
Symptom control alongside the Consultant
Oncologist/ Consultant Neurosurgeon.
Surveillance Monitoring
•
•
•
On Treatment Review
Patients will be actively monitored
and seen in clinic by a Consultant
Oncologist with MRI at 3 monthly
intervals.
Advice and consultation for patients
with residual symptoms and side
effects from Oncological treatments.
Designed by; B. Coghlan & L. Baldry & S. Bautista-Pike Neuro – Oncology CNS’s . January 2015.
Palliative Care Management
If Neuro-Surgery or Oncological treatments (i.e.
Radiotherapy or Chemotherapy) are not
feasible (whether in hospital or at home)
referral to a local palliative care team at any
stage of the pathway , is essential for
management of symptoms and co-ordination of
care.
Low Grade Glioma Specialist Nursing Pathway
Seamless communication throughout the patients pathway with local & regional neuro-oncology treatment centres
Emergency
Surgery
Emergency
Clinic
Appointment
Surgeon /
CNS
NBT /
Other
Hospital
Treatment / Surveillance
Phase
Treatment Decision Phase
Diagnosis Phase
TYA
Service for
16-24 Yrs
MDT and
PATH
Oncology
Diagnostic
Meeting
Palliative
Management
Professional follow up
•
•
Surveillance MRI
Scan 3/6/12
months
MDT
REVIEW
CNS
Telephone
follow up
Patients awaiting surgery .
Patients will have remote monitoring
with surveillance scanning dictated
by consultants / MDT opinion.
Patients will be booked to Clinic to
review with MRI results.
Patients will be seen by consultants
after their surgery with the CNS to
discuss histology and treatment
plans
Radiological/
Surgical Changes:transfer to High
Grade Pathway
•
•
Monitoring of patient s with active
neurological problems – liaising with GP
and other Community support
To discuss MRI results and MDT Outcomes.
with the patient over the phone.
Symptom control alongside the consultant
oncologist/ consultant neurosurgeon.
Remote
Monitoring/
discharge to
GP
Living Well Event
Health Needs Assessment(s)
Surveillance Monitoring
Telephone follow up / Support
•
Professiona
l Follow up
Neurosurgery
Not for
surgery
•
•
Living Well
Event
For Biopsy or
Excision
MDT
GP
referrals
Follow up Phase
•
•
•
Patients will be actively monitored &
seen in clinic by either the
Neurosurgeon or Oncologist with
MRI initially at 3 months , then 6
monthly for a year, then 1 yearly .
Advice & consultation for patients
with residual symptoms
Patients transfer to High Grade
Pathway on radiological /Surgical
transformation of their tumour.
Designed by B. Coghlan & L. Baldry & S. Bautista–Pike : Neuro-Oncology CNS’s. January 2015
Discharge to GP
•
Asymptomatic patients with stable disease
after 10 years of surveillance will be
discharged to their GP.
How?
■ Different outcome measures:
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Karnofsky Performance Status Scale (KPS)
WHO performance scale
Modified Rankin scale (MRS)
The FIM instrument (functional independence measure score)
Disability Rating Scale (DRS)
Barthel index
Functional Assessment of Cancer Therapy-Brain (FACT-BR)
The European Organization for Research and Treatment of Cancer Quality of Life
Questionnaire Brain Cancer Module (EORTC QLQ-BN20)
■ The FIM, KPS, and DRS did not show significant correlation with the FACT-BR.
■ Conclusion:
– Although patients make functional gains during and after inpatient rehabilitation, gains
in QOL are not significant until 1 month post-discharge.
– QOL does not appear to correlate well with functional outcomes.
– Further, the KPS is less sensitive than the FIM and DRS in detecting change in functional
status.
Arch Phys Med Rehabil Vol 82, November 2001
Which one?
What?
■ Quality of life (QOL) is a concept that encompasses the multidimensional well-being
of a person and reflects an individual's overall satisfaction with life.
■ QOL is a broad term that involves several dimensions, including physical or
functional status, emotional well-being, and social well-being.
“Cella D, Chang CH, Lai JS, Webster K. Advances in quality of life measurements in oncology patients. Semin
Oncol. 2002;29: 60-68”
Why?
■ Measurement of Health Related Quality of Life (HRQL) in brain tumour patients is
important because:
– Brain tumours and brain tumour treatment usually affect physical, cognitive as well
as emotional functioning.
– Understanding of disease burden and for the impact of specific tumour treatment.
“Heimans, Taphoorn. Impact of brain tumour treatment on quality of life. J Neurol 2002; 249(8):955-60”
Physical
well-being
QOL
Emotional
well-being
Social
well-being
Why?
■ Patients with primary brain tumors face serious challenges to their QOL. They have
difficulties with general symptoms such as headache, anorexia, nausea, seizures, and
insomnia.
■ These patients also face symptoms secondary to focal neurologic deterioration, including
motor deficits, personality changes, cognitive deficits, aphasia, or visual field defects.
■ The overall symptom burden and disability for glioma patients are significant, especially
in those with high-grade or recurrent disease
“Heimans JJ, Taphoorn MJ. Impact of brain tumour treatment on quality of life. J Neurol. 2002;249:
955-960”
“Osoba D, Brada M, Prados MD, Yung WK. Effect of disease burden on health-related quality of life in
patients with malignant gliomas. Neuro-Oncology. 2000;2: 221-228”
Treatment Factors
Tumour Factors
•Surgery
•Biopsies do worse
•RT
•Affect cognition
•Fatigue
•CT
•Medications
•Location
•size
•Type
•Psychology
•Cognitive
•Epilepsy
Raymond Liu et al. Neuro Oncol 2009;11:330-339
Patient Factors
•Studies focusing on brain
tumor patient comorbidities
and demographics and their
effects on QOL are largely
lacking
QOL
When?
Preoperative
Baseline
? Before RT
/ CT
1 month
post-RT/CT
With each
surveillance
scan
Who is it for?
■ High grade tumours?
■ Other intracranial tumours?
■
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Low grade tumours?
Young
Longer survivors
Complex symptoms setup
Epilepsy
Cognitive
Frequent appointments
Driving
Dedifferentiation
Often Unable to tap into hospiceservices often (even though they are for
patients with a life limiting illness
diagnosis)
How?
■ Neuro-oncology MDT clinic (Baseline)
■ By a phone interview
■ Electronic on the BNOG / Somerset cancer register websites, etc
■ Electronic in the clinic on a tablet (prepare for a paperless hospital)
■ Conclusions
“The QLQ-BN20 and the FACT-Br are both valid and reliable tools that have been used
extensively in the primary brain cancer population.
Choice between the two tools should consider each instrument’s individual strengths
and weaknesses.”
Why?
• Approximately 55 different generic and targeted questionnaires and symptom indices
• Range of questionnaires allow for greater disease, treatment or condition specificity
• Easy to complete (most in 5-10 minutes)
• Easy to administer as a computer-based/internet application
• Demonstrated reliability, validity and sensitivity to change
• Some questionnaires translated and pre-tested in over 50 languages
• Special consideration for spiritual well-being, palliative care, and treatment
satisfaction
• More social well-being coverage
• Written at the 4th Grade reading level (9-10 years old)
Why?
• Demonstrated equivalence in mode of administration (interview vs. self-
administration)
• Validated for use with special populations such as with the elderly and those living
in rural areas
• Appropriate for use in patients with a variety of chronic health conditions, and in
the general population
• Multiple scoring options: subscale scores, total score, and a Trial Outcome Index
(TOI)
• MID information available for several scales
• Normative data available for various cancer and general population samples
• Used by major cooperative clinical trial groups, international-industry sponsored
research, other government/military funded research, and health practice self
studies
How ?
■ Free
■ www.facit.org
Conclusion
■ The need to have an outcome measure
■ Economic impact
■ Audits, trials, research
■ Seamless, easy, validated tool
■ Integrated into software/websites