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