Navigating Central Nervous System Tumors: Screening, Treatment, and Post-Treatment Considerations
Marlon Garzo Saria, PhD, RN, AOCNS, FAAN
Why is N-O Unique?
• Growing but small, highly specialized and
multidisciplinary field
• Extensive spectrum of diseases, age-specific incidences,
highly variable outcomes, vastly different best practice
strategies for management
Weller, 2018
Board Certification
Neurology (15,382)
Medical
Oncology
(14,190)
https://www.abpn.com/about/facts-and-statistics/ and
https://www.abim.org/about/statistics-data/candidates-certified.aspx
Neuro-Oncology Diplomates
N=236Created from mapchart.net using data from United Council for
Neurologic Subspecialties (UCNS)
Diagnostic Specialties and
therapeutic Disciplines
Figure courtesy of Santosh Kesari, MD, PhD, FANA, FAAN
Nuclear medicine
Pediatric N-O
Medical Oncology
Genetics
Glioblastoma
• Most prevalent and aggressive CNS cancer in adults1
– Disease prognosis depends on• Age1-3
• Extent of surgical resection2,3
• DNA methylation status4
• Tumor location1,3
• IDH1 mutation5
• Poor prognosis is due to limited treatment options6
– Survival from diagnosis: 14.6 to 16.8 months7,8
• Survival from recurrence: 5.0 to 12.3 months9-18
IDH, isocitrate dehydrogenase.
Image from the Armed Forces Institute of Pathology, public domain, via Wikimedia Commons (http://creativecommons.org/publicdomain/mark/1.0).
1. Ostrom QT, et al. Neuro Oncol. 2013;15(suppl 2):ii1-ii56. 2. Curran WJ, et al. J Natl Cancer Inst.1993;85(9):704-710. 3. Lamborn KR, et al. Neuro Oncol.
2004;6(3):227-235. 4. Hegi ME, et al. N Engl J Med. 2005;352(10):997-1003. 5. Verhaak RGW, et al. Cancer Cell. 2010;17(1):98-110.
6. Wilson TA, et al. Surg Neurol Int. 2014;5:64. doi: 10.4103/2152-7806.132138. 7. Stupp R, et al. N Engl J Med. 2005;352(10):987-996.
8. Chinot OL, et al. N Engl J Med. 2014;370(8):709-722. 9. Wong ET, et al. J Clin Oncol. 1999;17(8):2572-2578. 10. Yung WKA, et al. Brit J Cancer.
2000;83(5):588-593. 11. Brada M, et al. Ann Oncol. 2001;12(2):259-266. 12. Chang SM, et al. Cancer. 2004;100(3):605-611. 13. Rich JN, et al. J Clin
Oncol. 2004;22(1):133-142. 14. Balmaceda C, et al. Cancer. 2008;112(5):1139-1146. 15. Neyns B, et al. Ann Oncol. 2009;20(9):1596-1603. 16.
Friedman HS, et al. J Clin Oncol. 2009;27(28):4733-4740. 17. Perry JR, et al. J Clin Oncol. 2010;28(12):2051-2057. 18. Wick W, et al. J Clin Oncol.
2010;28(7):1168-1174.
Glioblastoma
Malignant Brain Tumors
Neuroepithelial
Astrocytoma
Pilocytic Low Grade Anaplastic Glioblastoma
De Novo
Secondary GBM
EpendymomaOligo-
dendroglioma
Medullo-
blastomaOthers
Non-neuroepithelial
Cranio-
pharyngioma
Meningioma
Schwannoma
Lymphoma
http://training.seer.cancer.gov/
FDA-Approved Therapies for
Glioblastoma
GBM, glioblastoma multiforme; TMZ, temozolomide.
1. BiCNU [package insert]: Bristol-Myers Squibb Co, 2011. 2. US NLM. Drug record: carmustine. US NLM website. http://livertox.nih.gov/Carmustine.htm. Accessed August 1, 2015. 3. Gliadel Wafer [package insert]: Eisai Inc; 2013. 4. Temodar [package insert]: Merck & Co, Inc; 2015. 5. NCI/NIH. FDA approval for temozolomide. NCI website. http://www.cancer.gov/about-cancer/treatment/drugs/fda-temozolomide. Accessed September 1, 2015. 6. Avastin [package insert]: Genentech, Inc; 2015. 7. NCI/NIH. FDA approval for bevacizumab. NCI website. www.cancer.gov/cancertopics/druginfo/fda-bevacizumab#Anchor-Glioblastoma. Accessed August 1, 2015. 8. Optune Instructions for Use. Novocure 2015.
Carmustine
Injection1,2
Palliative Therapy
TTFields + TMZ8
Newly Diagnosed
GBM
TMZ4,5
Newly Diagnosed
and Maintenance
Carmustine Polymer
Wafers3
Newly Diagnosed
TTFields8
Recurrent GBM
Bevacizumab6,7
Recurrent GBM
Carmustine Polymer
Wafers3
Recurrent GBM
1977 2005
2009 2011
20151996
Treatment Approaches for Newly
Diagnosed Glioblastoma1,2
GBM, glioblastoma multiforme; RT, radiation therapy; TMZ, temozolomide.
1. Wilson TA, et al. Surg Neurol Int. 2014;5:64. 2. Optune Instructions for Use. Novocure 2015.
Newly diagnosed GBM
Maximal safe surgical resection not feasible
Maximal safe surgical resection feasible
Biopsy and/or subtotal resection
± carmustine polymer wafer
Or Or
RT +TMZ
TMZ
Clinical Trial
TMZ
TMZ
RT
TMZ
Or
In select cases
RT +TMZ
Optune +TMZ
Why are N-O patients Unique?
• Catastrophic diagnosis
• Considerable symptom burden
• Significant cognitive/psychological burden
• Impact on family and caregivers
Bailey, 2015
Navigation
• Definition: patient navigator, care navigator, professional
nurse navigator, cancer care navigator, nurse navigator,
oncology nurse navigator (ONS, 2017)
• Variability in navigation programs, standards and
guidelines, role function, minimum education, operational
practice (ONS, 2013, 2017)
• Professional registered nurse with oncology-specific
knowledge, who uses the nursing process to provide
quality health care to patients with timely education and
resources (ONS, 2015)
ONS 2013, 2015, 2017
Navigation
• provide interventions aimed at identifying patient-level
barriers to care and reducing delays in the provision of
care
• guide through the healthcare system, improving access
and providing a coordinated approach to cancer care
• ultimately designed to improve outcomes for patients
with cancer, reducing morbidity and mortality
Bailey, 2015
Competency Areas
• Coordination of the care of patients with a past, current,
or potential diagnosis of cancer
• Communication—assist patients with cancer, families,
and caregivers to overcome health care system barriers
• Education and resources—facilitate informed decision
making and timely access to quality health and
psychosocial care throughout the cancer care continuum
• Establish and maintain the professional role of the
ONN—to promote quality improvement of an
organization’s navigation program
Baileys et al, 2018
Distinct Features of Cancer Caregiving
• Nature of cancer
• More hours per day, more intense care over a
shorter period of time, more likely to incur out-of-
pocket expenses
• More symptom variability
• Cancer care continuum
• More complex treatment regimens
Kent EE, Rowland JH, Northouse L, et al. Caring for caregivers and patients: Research and clinical priorities for
informal cancer caregiving. Cancer. 2016 Jul 1;122(13):1987-95.
healthcare
model
shifts
Caregiver Support is Critical
Patricia A. Grady, PhD, Director, NIH/NINR, NIH Caregiving Summit, August 7, 2017
Care “demands”
Caregiver availability
birth, divorce,
remarriage rates
age in place
Early palliative care for GBM
Site PI(s):
Lynne Taylor, MD (Alvord Brain Tumor Center), Marlon
Saria, PhD (John Wayne Cancer Center),
Margaretta Page (UCSF)
Consultant(s): Shirley Otis-Green, Michael Fratkin, MD, Jennifer Temel, MD, Palliative Care Research Cooperative, Brain Tumor
Trials Collaborative
Subject matter expert(s):
Liz Salmi, anyone else?Stakeholders: BCQoLC
Benzi Kluger, MD (PI)
Co-Principal Investigator (Co-PI): potential
candidates
Co-Investigator(s):
Marlon Saria, PhD
Bethany Kwan, PhD
Neuro-palliative care, has NIH/PCORI chops, not an NO
or board certified in PC
Optional: This person
must add to PI’s expertise, preferably has NIH chops
Brain Tumor
Trials
Collaborative
Palliative care
Research
Cooperative
Group
Caregivers as Focus of Palliative Care in N-O
Navigation and Survivorship
• Diagnosis & treatment
summary
• Tumor-directed therapies
• Symptom management
• Fertility preservation
• HCPs and SC referrals
• Genetics
• Follow-up plan:
– Neuro-imaging
– Blood work
– Long-term AEs
Used with permission. Society for Neuro-Oncology.
References
Bailey A, Trad W, Kastelan M, Lamont S. Australian
experience of neuro-oncology care coordination: a
conversation. Clin J Oncol Nurs. 2015 Oct;19(5):610-4. doi:
10.1188/15.CJON.610-614. PubMed PMID: 26414579.
Baileys, K., McMullen, L., Lubjeko, B., Christensen, D.,
Haylock, P., Rose, T., et al. (2018). Nurse Navigator core
competencies: An Update to Reflect the Evolution of the Role.
Clinical Journal of Oncology Nursing, 22(3), 272–281.
https://doi.org/10.1188/18. CJON.272-281.
Bernardo BM, Zhang X, Beverly Hery CM, Meadows RJ,
Paskett ED. The efficacy and cost-effectiveness of patient
navigation programs across the cancer continuum: A
systematic review. Cancer. 2019 Apr 29. doi:
10.1002/cncr.32147. [Epub ahead of print] Review. PubMed
PMID: 31034604.
Leeper H, Milbury K. Survivorship care planning and
implementation in neuro-oncology. Neuro Oncol. 2018 Nov
9;20(suppl_7):vii40-vii46. doi: 10.1093/neuonc/noy110.
PubMed PMID: 30412260; PubMed Central PMCID:
PMC6225749.
Miller E. Neuro-Oncology Nurse Navigation: Developing the
Role for a Unique Patient Population. Clin J Oncol Nurs. 2018
Jun 1;22(3):347-349. doi: 10.1188/18.CJON.347-349.
PubMed PMID: 29781470.
Oncology Nursing Society (ONS). (2013). Oncology nurse
navigator core competencies. Retrieved from
https://www.ons.org/sites/
default/files/ONNCompetencies_rev.pdf.
Oncology Nursing Society (ONS). (2015). Oncology nurse
navigation role and qualifications. Oncology Nursing Forum,
42 (5), 447–448. https://doi.org/10.1188/15.ONF.447-448.
Oncology Nursing Society (ONS). (2017). Oncology nurse
navigator core competencies. Retrieved from
https://www.ons.org/sites/
default/files/2017ONNcompetencies.pdf.
Weller M. Next generation neuro-oncology. Eur J Cancer.
2018 Jun;96:1-5. doi: 10.1016/j.ejca.2018.03.016. Epub 2018
Apr 12. Review. PubMed PMID: 29656021.