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YOUNG ADULTS AND CANCER:
WHAT YOU DON’T KNOW MIGHT
HURT THEM
Devon McGoldrick, MPH
Joni Watson, MSN, MBA, RN, OCN
Director, Programs & Partnerships
LIVESTRONG™
Austin, Texas
Director
Nurse Oncology Education Program
(NOEP)
Austin, Texas
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Describe the young adult cancer burden in
the U.S.
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Identify the distinguishing characteristics of
the young adult cancer survivor.
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List at least three existing resources for the
various needs of young adult cancer
survivors and the healthcare professionals
who work with them.
Objectives
Current State of Adolescent
and Young Adult (AYA)
Oncology
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Definition of the AYA patient
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AYA Cancer Incidence
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Disparities
–
–
–
–
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Cancer Types/Sites
Timing of Diagnosis
Survivorship
Standards of Care
Clinical Trials
NCI PRG Report, 2006.
Albritton, Barr & Bleyer, 2009
AYA Oncology
According to the National Cancer Institute:
Cancer incidence in young adults (YA) has increased steadily
over the past 25 years, and "survival improvement trends
portend a worse prognosis for young adults diagnosed with
cancer today than 25 years ago”.
AYA Oncology
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Historically not recognized as a distinct
population with unique needs.
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Positioned at the intersection of pediatric and
adult oncology.
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Result: YA patients falling through the cracks
of resources and support services.
NCI PRG Report, 2006.
AYA Oncology
The Young Adult Survivor
Perspective
Adolescent and Young Adult (AYA) Cancer
Needs Assessment Survey (n=961 nurses)
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92% could not identify correct AYA age cohort (ages 15-39)
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30% unaware of AYA cancer prevalence
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42% are able to provide referrals to
AYA survivors
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97% report need for additional AYA training
Nurse Oncology Education Program (NOEP), 2010
What Nurses Don’t Know Does Hurt
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Physical Issues
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Emotional Issues
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Practical Issues
The Young Adult Cancer Survivor Perspective
"It's All About Survivorship!"
http://voicesofsurvivors.org/
Video courtesy of Voices of Survivors. Used with permission.
Becca Babcock
Physical Issues
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Biological differences of cancer in young adults
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Toxicity and pharmacokinetic tolerance in young
adults is understudied and often unknown
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Post-Treatment Concerns:
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Chronic pain
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Cognitive changes
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Fatigue
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Infertility
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Sexual dysfunction
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Lymphedema
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Neuropathy
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Osteoporosis
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Ostomies
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Urinary incontinence
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Secondary cancers
The Young Adult Cancer Survivor Perspective
Emotional Issues
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Fear of recurrence
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Concerns about body image
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Relationships (new, current, dating)
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Finding meaning
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Uncertainty about the future
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Setting priorities
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Emotional effects of cancer (anger, sadness/depression, anxiety,
stress, grief/loss)
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Concerns about fatigue and pain
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Emotional numbness
The Young Adult Cancer Survivor Perspective
Video clip from
The Adolescent & Young Adult Cancer Population- Unique Physical,
Emotional and Practical Needs
Unique Adolescent and Young Adult Emotional Needs
Practical Issues
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Difficulty communicating with health care team
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Delayed diagnosis:
– Feelings of invincibility
– Inadequate clinical suspicion
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Inadequate access to care
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Lack of or difficulty getting health or life insurance
The Young Adult Cancer Survivor Perspective
Practical Issues
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Difficulty working due to physical or emotional aftereffects
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Employment discrimination
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Financial stress
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Changes in relationships with family, friends or co-workers
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Finding and evaluating resources
The Young Adult Cancer Survivor Perspective
Video clip from
The Adolescent & Young Adult Cancer Population- Access to Care
Access to Care for the Adolescent and Young Adult Population
Distinguishing
Characteristics of the
Young Adult (YA) Cancer
Patient
MISSED: Stories of Young Adult
Cancer
AYA Patient Experience
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Mistrust
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Steep learning curve with lots of “firsts”
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Isolation
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Dropped off a cliff when it’s all over
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Lack of relevant resources and information
Bleyer, 2007.
AYA Patient Perspective
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Delayed Diagnosis or Misdiagnosis can
lead to mistrust of the system by AYAs
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Developmental factors that may influence
perceived credibility of AYAs among
providers
Bleyer, 2007.
Mistrust
Death
Independence /
autonomy
Self/body image
Questioning medical
authority
Insurance
Firsts
Disclosure
Fertility /
Sexuality
Restricted choices
Stalled career/degree
Bleyer, 2007.
Zebrack et al., 2006
Issues - Steep learning curve
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Many don’t even begin to process their
cancer experience until later. Sometimes
much later.
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Cancer history sets them apart from peers.
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Many more years of dealing with
repercussions.
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Critical to enlist AYA as a partner while in
treatment, in order to turn over
responsibility of follow-up.
Bleyer, 2007.
Windebank & Spinetta, 2008
Dropped off a cliff
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Fragmented between adult and pediatric
oncology worlds
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Relatively small percentage of patient
volume
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Hospitals/practices don’t “share”
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May be dealing with illness far from home,
family, friends
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Well peers don’t understand
Bleyer, 2007.
McGoldrick, Neal & Whiteson, 2008
Issues - Isolation
Resources
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Research, Education and Background Materials
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Support Organizations and Resources
– Practical: scholarships, legal assistance
– Physical: fertility, diet and nutrition, body image
– Emotional: relationships with spouses, family and
friends, fear of recurrence
– Community Resources: camps, peer-to-peer matching,
online support
Existing Resources
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National Cancer Institute Surveillance
Epidemiology and End Results (SEER)
Monograph
– Detailed information about cancer incidence and
outcomes in adolescents and young adults (AYA).
• population-based incidence, mortality, and survival data
• epidemiological data and risk factors for the development
of age-specific cancers
Research, Education and Background Materials
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Adolescent and Young Adult Oncology PRG
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Report published 2006
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Specific Recommendations
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Characterize (Ages, Biology)
Education/Outreach
Research Tools
Standards of Care
Advocacy
NCI PRG Report, 2006.
Research, Education and Background Materials
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1.0 credit hour CNE offered by
NOEP
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www.noeptexas.org
CME “Focus under Forty”
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http://university.asco.org/focusunder40
Research, Education and Background Materials
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LIVESTRONG Young Adult Alliance
– Inaugural meeting November 2006
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Formed to implement PRG recommendations
• Approx. 175 organizations (advocacy, medical
institutions, government)
• Work organized in 4 main areas
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Standards
Science
Awareness
Membership
Support Organizations and Resources
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AYA Scholarships and Financial Assistance
– College Scholarships: CCCpedia clearinghouse
– Grants: SAMFund
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Legal/Insurance Assistance:
– Cancer Legal Resource Center
– LIVESTRONG Navigation Services
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Career Planning: video podcast and tips from
CanTeen
Practical
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Fertility Information and Services offered by
LIVESTRONG Navigation Services
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LIVESTRONG AYA Video Podcasts
– Topics include diet & exercise, body image,
preserving your fertility
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Additional AYA support organizations with
tailored information include CanTeen and
Melissa’s Living Legacy Foundation
Physical
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LIVESTRONG video podcasts
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Fear of Recurrence
Fear of Dying
Dating and Sexuality
Communicating with Family and Friends
No Way, It Can’t Be- a guidebook from the
Ulman Cancer Fund for Young Adults
Emotional
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Camps and Retreats
– Camp Mak-A-Dream
– First Descents
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Peer to Peer Support
– Imerman Angels
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Online Support
– My Planet
– Group Loop
Community Resources
Our hopes for your take away
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Think differently about cancer and the impact it
can have on young adults
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Help us spread the word- talk to your colleagues
Thank you