THE PROBLEM

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YOUNG ADULTS AND CANCER WHAT YOU DONT KNOW
MIGHT HURT THEM
Devon McGoldrick, MPH Director, Programs PartnershipsLIVESTRONG Austin, Texas Joni Watson, MSN, MBA, RN, OCN Director Nurse Oncology Education Program (NOEP) Austin, Texas
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Objectives

• Describe the young adult cancer burden in the
  U.S.
• Identify the distinguishing characteristics of
  the young adult cancer survivor.
• List at least three existing resources for the
  various needs of young adult cancer survivors and
  the healthcare professionals who work with them.

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Current State of Adolescent and Young Adult (AYA)
Oncology
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AYA Oncology

• Definition of the AYA patient
• AYA Cancer Incidence
• Disparities
• Cancer Types/Sites
• Timing of Diagnosis
• Survivorship
• Standards of Care
• Clinical Trials

NCI PRG Report, 2006. Albritton, Barr Bleyer,
2009
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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.
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AYA Oncology

• Historically not recognized as a distinct
  population with unique needs.
• Positioned at the intersection of pediatric and
  adult oncology.
• Result YA patients falling through the cracks
  of resources and support services.

NCI PRG Report, 2006.
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The Young Adult Survivor Perspective
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What Nurses Dont Know Does Hurt

• Adolescent and Young Adult (AYA) Cancer
• Needs Assessment Survey (n961 nurses)
• 92 could not identify correct AYA age cohort
  (ages 15-39)
• 30 unaware of AYA cancer prevalence
• 42 are able to provide referrals to
• AYA survivors
• 97 report need for additional AYA training

Nurse Oncology Education Program (NOEP), 2010
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The Young Adult Cancer Survivor Perspective

• Physical Issues
• Emotional Issues
• Practical Issues

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"It's All About Survivorship!" http//voicesofsurv
ivors.org/
Video courtesy of Voices of Survivors. Used with
permission.
Becca Babcock
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The Young Adult Cancer Survivor Perspective

• Physical Issues
• Biological differences of cancer in young adults
• Toxicity and pharmacokinetic tolerance in young
  adults is understudied and often unknown
• Post-Treatment Concerns
• Chronic pain
• Cognitive changes
• Fatigue
• Infertility
• Sexual dysfunction
• Lymphedema
• Neuropathy
• Osteoporosis
• Ostomies
• Urinary incontinence
• Secondary cancers

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The Young Adult Cancer Survivor Perspective

• Emotional Issues
• Fear of recurrence
• Concerns about body image
• Relationships (new, current, dating)
• Finding meaning
• Uncertainty about the future
• Setting priorities
• Emotional effects of cancer (anger,
  sadness/depression, anxiety, stress, grief/loss)
• Concerns about fatigue and pain
• Emotional numbness

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Unique Adolescent and Young Adult Emotional Needs
Video clip from The Adolescent Young Adult
Cancer Population- Unique Physical, Emotional and
Practical Needs
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The Young Adult Cancer Survivor Perspective

• Practical Issues
• Difficulty communicating with health care team
• Delayed diagnosis
• Feelings of invincibility
• Inadequate clinical suspicion
• Inadequate access to care
• Lack of or difficulty getting health or life
  insurance

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The Young Adult Cancer Survivor Perspective

• Practical Issues
• Difficulty working due to physical or emotional
  aftereffects
• Employment discrimination
• Financial stress
• Changes in relationships with family, friends or
  co-workers
• Finding and evaluating resources

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Access to Care for the Adolescent and Young Adult
Population
Video clip from The Adolescent Young Adult
Cancer Population- Access to Care
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Distinguishing Characteristics of the Young Adult
(YA) Cancer Patient
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AYA Patient Experience

• MISSED Stories of Young Adult Cancer

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AYA Patient Perspective

• Mistrust
• Steep learning curve with lots of firsts
• Isolation
• Dropped off a cliff when its all over
• Lack of relevant resources and information

Bleyer, 2007.
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Mistrust

• Delayed Diagnosis or Misdiagnosis can lead to
  mistrust of the system by AYAs
• Developmental factors that may influence
  perceived credibility of AYAs among providers

Bleyer, 2007.
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Issues - Steep learning curve

• Death

Independence / autonomy
Self/body image
Insurance
Questioning medical authority
Disclosure
Fertility / Sexuality
Restricted choices
Stalled career/degree
Bleyer, 2007. Zebrack et al., 2006
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Dropped off a cliff

• Many dont even begin to process their cancer
  experience until later. Sometimes much later.
• Cancer history sets them apart from peers.
• Many more years of dealing with repercussions.
• Critical to enlist AYA as a partner while in
  treatment, in order to turn over responsibility
  of follow-up.

Bleyer, 2007. Windebank Spinetta, 2008
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Issues - Isolation

• Fragmented between adult and pediatric oncology
  worlds
• Relatively small percentage of patient volume
• Hospitals/practices dont share
• May be dealing with illness far from home,
  family, friends
• Well peers dont understand

Bleyer, 2007. McGoldrick, Neal Whiteson, 2008
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Resources
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Existing Resources

• Research, Education and Background Materials
• 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

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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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Research, Education and Background Materials

• Adolescent and Young Adult Oncology PRG
• Report published 2006
• Specific Recommendations
• Characterize (Ages, Biology)
• Education/Outreach
• Research Tools
• Standards of Care
• Advocacy

NCI PRG Report, 2006.
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Research, Education and Background Materials

• 1.0 credit hour CNE offered by NOEP
• www.noeptexas.org
• CME Focus under Forty
• http//university.asco.org/focusunder40

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Support Organizations and Resources

• LIVESTRONG Young Adult Alliance
• Inaugural meeting November 2006
• Formed to implement PRG recommendations
• Approx. 175 organizations (advocacy, medical
  institutions, government)
• Work organized in 4 main areas
• Standards
• Science
• Awareness
• Membership

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Practical

• AYA Scholarships and Financial Assistance
• College Scholarships CCCpedia clearinghouse
• Grants SAMFund
• Legal/Insurance Assistance
• Cancer Legal Resource Center
• LIVESTRONG Navigation Services
• Career Planning video podcast and tips from
  CanTeen

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Physical

• Fertility Information and Services offered by
  LIVESTRONG Navigation Services
• LIVESTRONG AYA Video Podcasts
• Topics include diet exercise, body image,
  preserving your fertility
• Additional AYA support organizations with
  tailored information include CanTeen and
  Melissas Living Legacy Foundation

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Emotional

• LIVESTRONG video podcasts
• Fear of Recurrence
• Fear of Dying
• Dating and Sexuality
• Communicating with Family and Friends
• No Way, It Cant Be- a guidebook from the Ulman
  Cancer Fund for Young Adults

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Community Resources

• Camps and Retreats
• Camp Mak-A-Dream
• First Descents
• Peer to Peer Support
• Imerman Angels
• Online Support
• My Planet
• Group Loop

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• Our hopes for your take away
• Think differently about cancer and the impact it
  can have on young adults
• Help us spread the word- talk to your colleagues
• Thank you