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

Society for Neuro-Oncology

Used with permission. Society for Neuro-Oncology.

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

Multimodal Treatment Approach

Figure courtesy of Santosh Kesari, MD, PhD, FANA, FAAN

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

Brain Cancer QOL Collaborative

Brain Cancer QOL Collaborative

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.