Download adolescent and young adult onology

AYA Initiative:
Has it Made a Difference?
Brandon Hayes-Lattin
September 12, 2013
AYA ONCOLOGY
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Different Cancers
Different Outcomes
Different Biology
Different Therapy
Different practical issues: Fertility
• AYA Initiative: Making a Difference
EPIDEMIOLOGY
ADOLESCENT AND YOUNG ADULT
(AYA) ONCOLOGY
• Cancer diagnosed among 15-39 year-olds
– ~70,000 per year
– Leading natural cause of death
• In contrast to younger and older cancer
patients, survival rates for young adults have
not increased since 1975
– Unique biology
– Health services
Cancer Prevalence by Age Group
http://seer.cancer.gov/publications/aya/
US Incidence, Age 15-39, 2003-2007
Males
Females
GU
0%
Leukemia
9%
25%
11%
Lymphoma
CNS
Sarcoma
5%
7%
11%
17%
6%
GI
Breast
Other
SEER AYA Monograph,
2006
16%
3%
25%
8%
Skin
Thyroid
9%
6%
3%
4%
6%
17%
12%
Clemmesen’s Hook
Clemmesen’s Hook
Hodgkin Lymphoma
Hodgkin Lymphoma
Melanoma
BRAF Mutations and Age
SURVIVAL
SARCOMA SURVIVAL GAP
SEER Monograph 2006
BRAIN TUMOR SURVIVAL GAP
SEER Monograph 2006
BREAST CANCER
SEER Monograph 2006
BIOLOGIC DISTINCTIVENESS
Leukemia Survival
SEER AYA Monograph,
2006
Incidence of Leukemia by Type
SEER AYA Monograph,
2006
ALL Survival
SEER AYA Monograph,
2006
AML Survival
SEER AYA Monograph,
2006
NCI WORKSHOP
• Breast Cancer
– Increased “triple negative”
– Basal-like tumors associated with increased
proliferation: p16, Ki-67
– Increased COX2 expression
– Varied gene expression profiles
– Differences in stromal milieu
NCI WORKSHOP
• Colorectal Cancer
– greater frequency of mucinous histology and
signet ring cells
– high microsatellite instability
– mutations of mis-match repair genes (40-44)
– lower frequency of K-ras mutations, 17p LOH and
18q LOH
– lower p53 protein levels
– Genetic susceptibility syndromes: Familial
adenomatous polyposis, Lynch Syndrome
THERAPY
SURVIVAL: PEDIATRIC VS. ADULT REGIMENS
Stock BLOOD 2008, pre-published
online
EWINGS SARCOMA: EFS
Paulussen ASCO Educ Session 2004
ASCO Fertility Recommendations
• Informed consent
– Possibility of infertility
– Discuss options or refer
• Standard practice
– Sperm cryopreservation
– Embryo cryopreservation
JCO 2006; 24:1-14
Barriers to Access
• Lack of coverage for fertility preservation
• Insurance coverage for standard fertility
treatments not applicable
– 16 States have infertility insurance mandates
– None include coverage for fertility preservation
• Small timeframe to preserve fertility
• Payment model
– Advanced payment required for treatments
Considerations
• Iatrogenic condition
• Benefit already exists
– Radiation shielding, surgical techniques
• Low usage: 0.0067%
• Low cost: $0.03 per member per month
• Potential savings: accepting adjuvant
chemotherapy
• Benefits: decreased stress, improved QOL,
improved decision-making
Institute of Medicine
(policy)
• National Cancer Policy Forum/LIVESTRONG
Workshop on Addressing the Needs of
Adolescents and Young Adults with Cancer, July
15-16, 2013
• This workshop will identify gaps and challenges in
caring for AYA patients with cancer, and discuss
potential strategies and actions to guide
stakeholders as they continue their work to
improve the quality of care for this population
NCI AYA Working Group
(science)
• Next Steps for AYA Oncology: A Scientific Update,
September 15-16, 2013
– The purpose of this meeting is to update the science
of AYA oncology to help with NCI strategic planning,
scientific gap areas, and potential funding opportunity
development.
– Epidemiology
– Biology
– Clinical Trials
– Health Services
– HRQOL/Symptom Management
NCI PRG Recommendations
1. Identify the characteristics that distinguish the
unique cancer burden in the AYAO patient.
2. Provide education, training, and communication
to improve awareness, prevention, access, and
quality cancer care for AYAs.
3. Create the tools to study the AYA cancer
problem.
4. Ensure excellence in service delivery across the
cancer control continuum.
5. Strengthen and promote advocacy and support
of the AYA cancer patient.
1. Distinguishing Characteristics
• Elucidate unique biologic characteristics of AYA
cancers and AYA patients that affect disease
outcome in this population.
• Elucidate AYA life stage/developmental
characteristics that influence care-seeking,
adherence to treatment, and medical and
psychosocial outcomes.
• Identify and ameliorate health disparities
experienced by AYA cancer patients and survivors.
1. Distinguishing Characteristics
• Disease-specific retrospective analyses
– Osteosarcoma, colorectal cancer, ALL, breast
cancer, testicular cancer, thyroid cancer
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NCI Biology Workshop (Tricoli, J NCI 2011)
Health-related QOL (Smith, JCO 2013)
Epidemiology (Johnson, JAMA 2013)
Toxicity (Gupta, Cancer 2012)
Distress (Kwak, JCO 2013)
2. Education, Training, and
Communication
• Raise awareness of AYA cancer issues as a first
step toward increasing national focus and
resource allocation to address the AYA cancer
problem.
• Provide targeted education to patients,
families/caregivers, and the public about AYA
cancer issues.
• Educate multidisciplinary providers who work
with AYAs to improve referrals and services to this
population.
2. Education, Training, and
Communication
• ASCO: Focus Under Forty
• Nurse Oncology Education Program (NOEP): At
The Crossroads
• Adolescent and Young Adult Oncology Training
for Health Professionals: A Position Statement
(Hayes-Lattin, JCO 2010)
• National Young Adult Cancer Awareness Week
3. Tools
• Create a large prospective database of AYA cancer
patients to facilitate research on this age group.
• Increase the number of annotated specimens to
support research progress.
• Create/modify needed assessment tools specific to AYA
cancer issues.
• Improve grant coding and search term standardization
to enable evaluation of research efforts and progress.
• Expand clinical trials for AYAs to increase treatment
choices and accelerate treatment advances.
3. Tools
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Age-eligibility efforts
ALL study: CALGB, SWOG, ECOG 10403
AYA Cohort feasibility
PubMed AYA Cancer hits
– 2002: 210
– 2012: 5232
4. Service Delivery
• Develop, evaluate, and disseminate standards
of care for AYA cancer patients and survivors
to improve outcomes.
• Establish a national network or coalition of
providers and advocates seeking to achieve a
standard of excellence in AYA cancer care.
4. Service Delivery
• LIVESTRONG Young Adult Alliance/Critical
Mass
• Fertile Hope Centers of Excellence
• Quality cancer care for adolescents and young
adults: a position statement (Zebrack, JCO
2010)
• NCCN AYA Guidelines
5. Advocacy and Support
• Address the subjective experience of AYA
patients.
• Build the capacity of existing resources to
address AYA psychosocial needs.
• Evaluate existing programs and develop new
interventions.
5. Advocacy and Support
• Critical Mass Annual Meeting
– Alliance membership 350
• International Charter of Rights for Young
People with Cancer (http://cancercharter.org)
Future Efforts
• Coordination
– Critical Mass
• National Clinical Trials Network
– COG and SWOG AYA Committees
• Research Priorities
– NCI Workshop
• Units
– Teenage Cancer America
• Recognition
– Change It Back Center of Excellence