Brad Zebrack, Ph.D., MSWUniversity of Michigan School of Social Work and
Comprehensive Cancer CenterAnn Arbor, Michigan
“This is what I picture…this is really weird, I see, like, a grave, and that’s the person that died, on August 4th. She’s gone. Because you know, my life had to change, I had cancer and I can’t go back there, I can’t go in the past, so it’s like, she’s gone.”
YA beforecancer entered
life
Family
Friends/Relationships
Work
Hobbies
LeisureTime
Spiritual Life
Sense of security
Optimism
Hopes andDreams
Identity
Sports
Self-esteem
Dating
Establishing independence Forming identity, becoming comfortable
with who you are Relationships (friends, family, love) Beginning your own family Jobs and careers Finding your place in the world Taking responsibility, making independent
choices
CANCECANCE
RR
Altered relationships Dependence – Independence Issues Life achievement disruptions Impact on body, sexual image and
integrity Existential issues/meaning of life
Life Following Cancer
Diagnosis
Family
Sense of security Work
Anger
AnxietyWorld of medicine
Tons of Info- Yikes!!
Friends Fear
Mortality
Loss of Health
Body image
Depression
Loss of control
Scans and Tests
Hospital Life
Finances
UnknownUncertainty
Self-Esteem
= Things in your life that existed Things in your life that existed before cancer that have changedbefore cancer that have changed
= New practical issuesNew practical issues
= New emotions New emotions
Some people are uncomfortable around me.
“So, how are you?...Really.”
NowNow what am I going to do with my life?
I’m different.
Everyone in support groups is at least 20 years older; overwhelmingly breast cancer patients.
Hospital volunteers are primarily very nice people grandma’s age.
Few opportunities to meet other young adults.
Some of the young people you meet die.
“I mean, some people [in the support group] were as old as 75 and 80 years old, and like coming to terms with their death. And I’m trying to come to terms with how I’m going to live through this.”
From a Young Adult who From a Young Adult who had attended a support had attended a support
group…group…
From a Young Adult who From a Young Adult who had attended a support had attended a support
group…group…
Dealing with cancer as a teenager or young adult can be LONELY.
Who are they?• Ages roughly 15-44
Why the special attention?
Bleyer
Thanks to Archie Bleyer, MD, MD Anderson Cancer Center, Houston, TX
Mind the Gap
65+ Years (60%)
40-64 Years (35%)
20-39 Years (4%)
<19 Years (1%)
Female Breast (23%)
Prostate (20%)
Colorectal (10%)
Age Distribution, 2006
Estimated Number of Survivors by Diagnosis,
2006
Gynecologic(9%)
Melanoma (7%)
Urinary (7%)
Hematologic(8%)
Thyroid (4%)
Other (11%)
Source: National Cancer Institute, National Institutes of Health. Estimated US Cancer Prevalence. Accessed July 27, 2009, from http://dccps.nci.nih.gov/ocs/prevalence/prevalence.html
0102030405060708090
1950 1954 1958 1962 1966 1970 1974 1978 1982 1986 1990 1994 1998
Year
Mor
talit
y pe
r m
illio
n
Age < 15 Years
Bleyer, 2006
4%
34%
53%
71%78%
85%
0%
20%
40%
60%
80%
100%
5-Y
ear
Su
rviv
al
%
1960-63 1970-73 1974-76 1980-82 1986-88 1992-97
Age < 15 Years SEER (9 areas)
http://seer.cancer.gov/
All Age Average = 1.5% / yr
AYA Gap
25
- 0.27%
2.38%
1.60%
1.72%
-0.3%
0%
0.6%
1.2%
1.8%
2.4%
0 5 10 15 20 30 35 40 45 50 55 60 65 70 75
Age at Diagnosis (Years)
Relative Change in 5-Year SurvivalRelative Change in 5-Year Survival1975 to 1997, SEER 1975 to 1997, SEER
Relative Change in 5-Year SurvivalRelative Change in 5-Year Survival1975 to 1997, SEER 1975 to 1997, SEER
Average
Annual%
Increase
The Great Divide
Bleyer
National Cancer Mortality Reduction1990-1998
National Cancer Mortality Reduction1990-1998
Age (Years)
2.8%2.6%
1.8%
0.9%
1.5%
0.4%
1.1%
1.5%
0%
1%
3%
2%
Average Annual
% Reductio
n
0-4 5-9 10-14 15-19 20-24 25-29 30-34 35-39
Why?
Bleyer
Clinical Trial Gap
Bleyer
0
4,000
8,000
12,000
Accruals
0-4 5-9 10-14 15-19 20-24 25-29 30-34 35-39Age (Years)
National Cancer Mortality Reduction, 1990-1998National Cancer Mortality Reduction, 1990-1998
Cancer Mortality Reduction
0%
1%
3%
2%
National Treatment Trial Accruals, 1990-1998National Treatment Trial Accruals, 1990-1998
11689
7875
4786
3837
10711491
3532
6733
Clinical Trial Data courtesy of Montello M, Budd T, CTEP, NCI
Bleyer
0%
5%
10%
15%
20%
25%
10,000
p = .001
1,000
Accruals
% Mortality Reductio
n
Bleyer, 2006
Health Insurance Gap
Bleyer
Age (Years)
-
50
60
70
80
90
0-17 18-24 25-34 35-44 45-54 55-64
% Insure
d
0%
1.0%
2.0%
Ave.
An
nu
al %
Can
cer
Mort
ality
Rate
Red
ucti
on
, 1
99
0-1
99
8
0.9%
0.4%
1.1%
1.5%
2.2%
20-24
30-34
25-29
35-39
0-19
Bleyer
Referral Gap
Bleyer
Management Sites of Cancer Patients, U.S.Management Sites of Cancer Patients, U.S.
0%
20%
40%
60%
80%
100%
<15 15-40 >40Age (Years)
Community Sites
Tertiary CancerCenters*
*academic medical centers, etc.
Bleyer
Facilities Gap
Bleyer
ChildrensChildrensHospitalsHospitals
andandFacilitiesFacilities
ChildrensChildrensHospitalsHospitals
andandFacilitiesFacilities
AdultAdultPatientPatient
HospitalsHospitals
Community-based Practices
AdultAdultPatientPatient
HospitalsHospitals
Community-based Practices
Facilities & Services GapFacilities & Services GapFacilities & Services GapFacilities & Services Gap
Age (Years)Age (Years)00 15-1915-19 30-3430-34
AYA
Gap
70+70+
Bleyer
Psychosocial Gap
Bleyer
Support from family and friends Age-appropriate information Ability to assume responsibility Opportunities to meet other YA
survivors Counseling and support
*Zebrack, B., Bleyer, A., Albritton, K., Medearis, S., & Tang, J. (2006). Assessing the health care needs of adolescent and young adult (AYA) cancer patients and survivors, Cancer, 107(12), 2915-2923.
Adequate health insurance To keep hopes and dreams alive Ability to communicate with
spouse/partner Ability to express feelings Maintain sense of control Stay involved in social activities Manage uncertainty
*Zebrack, B., Bleyer, A., Albritton, K., Medearis, S., & Tang, J. (2006). Assessing the health care needs of adolescent and young adult (AYA) cancer patients and survivors, Cancer, 107(12), 2915-2923.
Assessing the health and supportive care needs of young adult cancer patients and survivors• Need for resources and services• Unmet need
Zebrack, B.J. (2009). Information and service needs for young adult cancer survivors, Supportive Care in Cancer, 17, 349-357.
Zebrack, B.J. (2008). Information and service needs for young adult cancer patients, Supportive Care in Cancer, 16, 1353-1360.
Gender24% male, 76% female
Education64% College grad
Marital/Partner status61% married/partner
Current age40% 18-2960% 30-39
Employment status74% employed ftWork, home, school
Various cancers23% breast28% HD; 15% NHL16% Bone tumors/Other sarcomas7% Testicular
80% off-treatment
Age at diagnosis37% 15-24 years63% 25-35 years
Years since diagnosis24% < 2 years49% 2-5 years27% > 5 years
Needs of AYA Cancer Patients (n=210) and Survivors (n=850)
0 10 20 30 40 50 60 70 80 90 100
Information about cancer
Internet sites
Diet and nutrition information
Exercise information
Assistance w ith health insurance
Mental health counseling
Infertility information
CAM health care services
Camps, retreats
Sexuality/intimacy counseling
Religious/spiritual counseling
Infertility treatment/services
Family counseling
Adoption services
Transportation assistance
Child care
Alcohol/drug abuse counseling
%
Patients Survivors
Most YAs want age-appropriate information
Needs for psychological support, self-care, health care and family support are largely unmet
Need for concrete services (child care, transportation), while small, did NOT differ by SES
Need for alcohol/sub abuse services is evident, and perhaps under-reported
Many service needs occur within a social or peer context
Social relationships and peer support are imperatives for the healthy growth and development of adolescents and young adults
Self-identity• develops in relationship to, or identification with, a group
Making friends• Not just “nice”• Necessary for emotional health and well-being• Health behavior benefits (peer influences)
Groups quickly develop cohesion. Peer support programs (e.g.,
adventure therapies, retreats, camps) improve self-confidence, independence, and social contacts.
See Roberts et al., 1997; Elad, Yagil, Cohen & Meller, 2003
Coping with uncertainty Dependency versus autonomy Social exclusion, isolation
Body image Intimacy, sexuality
and fertility Employment,
education
See Roberts et al., 1997
To address areas of common concern
35 Participants 18-39 years old Diagnosed as AYAs
Our Goals Address survivorship
issues Provide education and
tools for advocacy Build bridges of
support among young adult cancer survivors
Their Goals Have fun Meet other survivors Understand more
about their cancer and potential late effects
Learn about how to “tell my story so that it will help others.”
Self AdvocacyAdvocating for
OthersAdvocating for
Society
Keynote Address: Susan Leigh, RN
3-time survivor, advocate
Personal Advocacy Self-advocacy: Where it all begins You and Your Doctor Forget about Waldo: Where are those
Resources?
Mentor Advocacy: Advocating for Others
Becoming a Mentor Do’s & Don’t of Public Speaking Establishing and Maintaining Connections:
A Gateway to Community-Building
Community-National Advocacy Advocating at the State and National
Level Getting Involved in Public Policy Networking within the Survivorship
Community
“Knowing as much as possible about your disease, its treatments, and how its potential effects on your
body can empower you to take charge of your health and help you make the most of your survivorship.”
Advocacy gives you some stability and a feeling of regaining some control in your life
Advocacy is confidence building in the way it helps you face challenges that seem insurmountable
Advocacy is a way of reaching out to others. It can be as simple as asking your doctor or nurse for the name of someone to talk with who has survived your type of cancer
Advocacy can improve your quality of life Advocacy for yourself may be the
difference that turns feeling hopeless and helpless into feeling hopeful.
Since late 1980s, early 1990s• Vital Options• Cancervive• Leukemia & Lymphoma Society• The Wellness Community• Gilda’s Club• Lymphoma Research Foundation• Minnie Pearl Foundation (Tennessee)
Planet Cancer* Young Survival
Coalition* Ulman Family Fund for
Young Adults* Fertile Hope* WorkingAgainstCancer* CancerCare Memorial Sloan-
Kettering Cancer Center, Post-Treatment Resource Program
Testicular Cancer Resource Group*
Cancer Survivors Unite* The SAM Fund* The Waiting Room* Real Time Cancer
(Canada)* First Descents
(Colorado)* Camp Mak-a-Dream NY Life Lab* Global Campaign for
Cancer Survivorship* Steps for Living* “PopSmear”*
*Founded by Cancer Survivors
Since late 1990s
Planet Cancer* Young Survival
Coalition* Ulman Family Fund for
Young Adults* Fertile Hope* WorkingAgainstCancer* CancerCare Memorial Sloan-
Kettering Cancer Center, Post-Treatment Resource Program
Testicular Cancer Resource Group*
Cancer Survivors Unite* The SAM Fund* The Waiting Room* Real Time Cancer
(Canada)* First Descents
(Colorado)* Camp Mak-a-Dream NY Life Lab* Global Campaign for
Cancer Survivorship* Steps for Living* “PopSmear”*
*Founded by Cancer Survivors
Since late 1990s