Tumour Outcome Measures Amr Mohamed FRCS Surg Neuro Surgical Neurooncology Fellow North Bristol Trust Introduction In 2011 in the UK 9400 new patients were diagnosed to have brain tumour ID: 512312
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Slide1
Brain Tumour Outcome Measures
Amr Mohamed FRCS (Surg Neuro)Surgical Neuro-oncology FellowNorth Bristol TrustSlide2
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/cancer-statistics/statistics-by-cancer-type/brain-tumours#heading-Zero, Accessed November, 2015”Slide3
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/cancer-statistics/statistics-by-cancer-type/brain-tumours#heading-Two, Accessed November, 2015”Slide4
High
Grade Glioma
Specialist Nurse Pathway
Emergency
NBT or Other Hospital
GP referrals
MDT
Clinic Appointment Surgeon / Oncologist or CNS
Palliative Care Management
Diagnosis Phase
Treatment Decision Phase
Emergency Surgery
Elective Surgery Biopsy or Excision
MDT and PATH
Diagnostic Meeting
Surgeon / CNS
Treatment / Surveillance Phase
Follow up Phase
Oncology Treatment
Radiotherapy Chemotherapy/
Clinical Trials
Surveillance MRI Scan
3 monthly
Post radiotherapy and Chemotherapy
Radiological Progression / MDT REVIEW
Further
2nd Line Chemotherapy
Further Surgery
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.
Surveillance Monitoring
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.
Telephone Support
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.
Professional Follow up
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.
Palliative Care Management
Palliative Care Management
Palliative Care Management
Designed by; B. Coghlan & L. Baldry & S. Bautista-Pike Neuro – Oncology CNS’s . January 2015.
Telephone Clinic Follow-up / Support
Living Well Event
Health Needs Assessment(s
)
TYA SERVICE 16-24 YRS
Seamless communication throughout the patients pathway with local & regional neuro-oncology treatment centresSlide5
Low Grade Glioma
Specialist Nursing PathwayEmergency
NBT / Other Hospital
GP referrals
MDT
Clinic Appointment Surgeon / CNS
Palliative
Management
Diagnosis Phase
Treatment Decision Phase
Emergency Surgery
For Biopsy or Excision
MDT and PATH
Diagnostic Meeting
Treatment / Surveillance Phase
Follow up Phase
Oncology
Neurosurgery
Surveillance MRI Scan 3/6/12 months
Living Well Event
CNS Telephone follow up
Professional Follow up
Remote Monitoring/discharge to GP
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.
Surveillance Monitoring
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.
Telephone follow up / Support
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
Professional follow up
Asymptomatic patients with stable disease after 10 years of surveillance will be discharged to their GP.
Discharge to GP
Not for surgery
MDT REVIEW
Designed by B. Coghlan & L. Baldry & S. Bautista–Pike : Neuro-Oncology CNS’s. January 2015
Radiological/ Surgical Changes:-transfer to High Grade Pathway
TYA Service for 16-24 Yrs
Seamless communication throughout the patients pathway with local & regional neuro-oncology treatment centres
Living Well Event
Health Needs Assessment(s)Slide6Slide7
How?
Different outcome measures:Karnofsky Performance Status Scale (KPS)WHO performance scaleModified 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)Slide8Slide9
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 Slide10
Which one?Slide11
Quality of Life (QOL)Slide12
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”Slide13
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”Slide14Slide15
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”Slide16
Raymond Liu et al.
Neuro
Oncol
2009;11:330-339Slide17
When?Slide18
Who is it for?
High grade tumours?Other intracranial tumours?
Low grade
tumours
?
Young
Longer survivors
Complex symptoms setup
Epilepsy
Cognitive
Frequent appointments
Driving
Dedifferentiation
Often Unable to tap into hospice- services often (even though they are for patients with a life limiting illness diagnosis
)Slide19
How?Neuro-oncology MDT clinic (Baseline)By a phone interview
Electronic on the BNOG / Somerset cancer register websites, etcElectronic in the clinic on a tablet (prepare for a paperless hospital)Slide20
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.”Slide21
Functional Assessment of
Cancer Therapy-Brain (FACT-Br)Slide22
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) Slide23
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 studiesSlide24
How ?
Freewww.facit.orgSlide25
ConclusionThe need to have an outcome measureEconomic impact
Audits, trials, researchSeamless, easy, validated toolIntegrated into software/websitesSlide26