YOUNG ADULTS AND CANCER: WHAT YOU DON’T KNOW MIGHT HURT THEM

1. YOUNG ADULTS AND CANCER: WHAT YOU DON’T KNOW MIGHT HURT THEM

2. 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. Objectives

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

4. 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 AYA Oncology

5. 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”. According to the National Cancer Institute: AYA Oncology

6. 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. AYA Oncology

7. The Young Adult Survivor Perspective

8. Adolescent and Young Adult (AYA) Cancer Needs Assessment Survey (n=961 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 What Nurses Don’t Know Does Hurt

9. Physical Issues • Emotional Issues • Practical Issues The Young Adult Cancer Survivor Perspective

10. "It's All About Survivorship!" http://voicesofsurvivors.org/ Video courtesy of Voices of Survivors. Used with permission. Becca Babcock

11. 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 The Young Adult Cancer Survivor Perspective

12. 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 The Young Adult Cancer Survivor Perspective

13. Video clip from The Adolescent & Young Adult Cancer Population- Unique Physical, Emotional and Practical Needs Unique Adolescent and Young Adult Emotional Needs

14. 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 The Young Adult Cancer Survivor Perspective

15. 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 The Young Adult Cancer Survivor Perspective

16. Video clip from The Adolescent & Young Adult Cancer Population- Access to Care Access to Care for the Adolescent and Young Adult Population

17. Distinguishing Characteristics of the Young Adult (YA) Cancer Patient

18. MISSED: Stories of Young Adult Cancer AYA Patient Experience

19. Mistrust • Steep learning curve with lots of “firsts” • Isolation • Dropped off a cliff when it’s all over • Lack of relevant resources and information • Bleyer, 2007. AYA Patient Perspective

20. 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. Mistrust

21. Firsts Death Independence / autonomy Self/body image Questioning medical authority Insurance Disclosure Fertility / Sexuality Restricted choices Stalled career/degree Bleyer, 2007. Zebrack et al., 2006 Issues - Steep learning curve

22. Many don’t 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 Dropped off a cliff

23. Fragmented between adult and pediatric oncology worlds • Relatively small percentage of patient volume • Hospitals/practices don’t “share” • May be dealing with illness far from home, family, friends • Well peers don’t understand Bleyer, 2007. McGoldrick, Neal & Whiteson, 2008 Issues - Isolation

24. Resources

25. 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 Existing Resources

26. 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

27. 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. Research, Education and Background Materials

28. 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

29. 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 Support Organizations and Resources

30. 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 Practical

31. 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 Melissa’s Living Legacy Foundation Physical

32. LIVESTRONG video podcasts • 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

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

34. 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