Transcript Shaken, Stirred, Movin’ On The Young Adult Cancer Experience

Brad Zebrack, Ph.D., MSW
University of Michigan School of Social Work and
Comprehensive Cancer Center
Ann 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.”
Identity
Hopes and
Dreams
Family
Spiritual
Life
YA before
cancer entered
life
Selfesteem
Friends/
Relationships
Sense of
security
Work
Leisure
Time
Sports
Hobbies
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
 Altered
relationships
 Dependence – Independence Issues
 Life achievement disruptions
 Impact on body, sexual image and
integrity
 Existential issues/meaning of life
Family
Anger
Unknown
Finances
Sense of
security
Work
Scans and
Tests
Uncertainty
Life
Following Cancer
Diagnosis
Tons of
Info- Yikes!!
Loss of
control
Depression
World of
medicine
Loss of
Health
Friends
Mortality
Hospital
Life
Body
image
Anxiety
Fear
 = Things in your life that existed
before cancer that have changed
SelfEsteem
 = New practical issues
 = New emotions
 Some
people are uncomfortable around
me.
 “So,
 Now
 I’m
how are you?...Really.”
what am I going to do with my life?
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.
From a Young Adult who had
attended a support group…
“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.”
Dealing with cancer as a teenager or
young adult can be LONELY.
Bleyer
 Who
are they?
• Ages roughly 15-44
 Why
the special
attention?
Thanks to Archie Bleyer, MD,
MD Anderson Cancer Center, Houston, TX
Mind the Gap
Age Distribution, 2006
20-39 Years
(4%)
40-64 Years
(35%)
Estimated Number of Survivors
by Diagnosis, 2006
<19 Years
(1%)
Other (11%)
Thyroid (4%)
Female
Breast (23%)
Melanoma
(7%)
65+ Years
(60%)
Urinary
(7%)
Hematologic
(8%)
Gynecologic
(9%)
Prostate
(20%)
Colorectal
(10%)
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
Mortality per million
90
80
70
60
50
40
30
20
10
0
Age < 15 Years
1950 1954 1958 1962 1966 1970 1974 1978 1982 1986 1990 1994 1998
Bleyer, 2006
Year
100%
Age < 15 Years SEER (9 areas)
5-Year Survival %
80%
85%
71%
60%
78%
53%
40%
34%
20%
4%
0%
1960-63
http://seer.cancer.gov/
1970-73
1974-76
1980-82
1986-88
1992-97
Bleyer
Relative Change in 5-Year Survival
1975 to 1997, SEER
2.4%
1.8%
The Great Divide
2.38%
1.72%
Average
Annual
% 1.2%
Increase
1.60%
All Age Average = 1.5% / yr
AYA Gap
0.6%
0%
-0.3%
- 0.27%
0
5
10
15
20
25
30
35 40
45
50
55
Age at Diagnosis (Years)
60
65
70 75
Bleyer
National Cancer Mortality
Reduction
1990-1998
3%
2.8%
2.6%
Average
Annual 2%
%
Reduction
1.8%
1.5%
Why?
1.5%
1.1%
1%
0.9%
0.4%
0%
0-4
5-9
10-14 15-19
20-24 25-29 30-34
Age (Years)
35-39
Bleyer
Clinical Trial Gap
National Treatment Trial Accruals, 1990-1998
National Cancer Mortality Reduction, 1990-1998
Bleyer
25%
11689
%
Mortality
Reduction
3%
20%
15%
12,000
Accruals
Cancer Mortality
Reduction
10%
7875
5%
2%
p = .001
8,000
6733
0%
1,000
4786
Accruals
3837
10,000
4,000
3532
1%
1071
0%
0-4
Bleyer, 2006
5-9
10-14 15-19
1491
20-24 25-29 30-34
35-39
Age (Years)
Clinical Trial Data courtesy of Montello M, Budd T, CTEP, NCI
0
Bleyer
Health Insurance Gap
Ave. Annual % Cancer Mortality Rate Reduction, 1990-1998
Bleyer
90
2.2%
2.0%
80
1.5%
%
1.1%
1.0%
70 Insured
0.9%
60
0.4%
0%
-
0-17
0-19
18-24
25-34
35-44
20-24 25-29 30-34 35-39
Age (Years)
45-54
55-64
50
Bleyer
Referral Gap
Bleyer
Management Sites of Cancer
Patients, U.S.
100%
80%
60%
Community Sites
40%
20%
Tertiary Cancer
Centers*
0%
<15
15-40
Age (Years)
>40
*academic medical
centers, etc.
Bleyer
Facilities Gap
Facilities & Services Gap
Bleyer
Childrens
Hospitals
and
Facilities
Adult
Patient
Hospitals
AYA
Gap
0
Community-based
Practices
15-19
30-34
Age (Years)
70+
Bleyer
Psychosocial Gap
 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.
Gender
24% male, 76% female
Education
64% College grad
Marital/Partner status
61% married/partner
Various cancers
23% breast
28% HD; 15% NHL
16% Bone tumors/Other
sarcomas
7% Testicular
80% off-treatment
Current age
Age at diagnosis
Employment status
Years since diagnosis
40% 18-29
60% 30-39
74% employed ft
Work, home, school
37% 15-24 years
63% 25-35 years
24% < 2 years
49% 2-5 years
27% > 5 years
Needs of AYA Cancer Patients
(n=210) and Survivors (n=850)
%
Patients
Survivors
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
0
10 20 30 40 50 60 70 80 90 100
 Most YAs
want age-appropriate
information
 Needs for psychological support, selfcare, 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 selfconfidence, independence, and social
contacts.
See Roberts et al., 1997; Elad, Yagil, Cohen & Meller, 2003
To address areas of common concern
Coping
with
uncertainty
Dependency versus
autonomy
Social exclusion,
isolation
See Roberts et al., 1997
 Body
image
 Intimacy, sexuality and
fertility
 Employment,
education
 35
Participants
 18-39 years old
 Diagnosed as AYAs
Our Goals
Their Goals
 Address
 Have
survivorship
fun
issues
 Meet other survivors
 Provide education and
 Understand more about
tools for advocacy
their cancer and
 Build bridges of support
potential late effects
among young adult
 Learn about how to “tell
cancer survivors
my story so that it will
help others.”
Self Advocacy
Advocating for Others
Advocating for Society
Keynote Address: Susan Leigh, RN
3-time survivor, advocate
Personal Advocacy
 Self-advocacy: Where
 You
it all begins
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)
Since late 1990s







Planet Cancer*
Young Survival Coalition*
Ulman Family Fund for
Young Adults*
Fertile Hope*
WorkingAgainstCancer*
CancerCare
Memorial Sloan-Kettering
Cancer Center, PostTreatment 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, PostTreatment 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