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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. Shaken. Life Changes.

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Shaken stirred movin on the young adult cancer experience

Shaken, Stirred, Movin’ OnThe Young Adult Cancer Experience

Brad Zebrack, Ph.D., MSW

University of Michigan School of Social Work and

Comprehensive Cancer Center

Ann Arbor, Michigan



Life changes
Life Changes

“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.”



Life before cancer
Life Before Cancer

Family

Hopes and

Dreams

Identity

Friends/

Relationships

Spiritual

Life

YA before

cancer entered

life

Self-

esteem

Sense of

security

Optimism

Work

Leisure

Time

Sports

Hobbies

Dating


What s supposed to happen in your 20 s and 30 s
What’s Supposed to Happen in Your 20’s and 30’s

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



Universal disruptions of cancer
Universal Disruptions of Cancer

Altered relationships

Dependence – Independence Issues

Life achievement disruptions

Impact on body, sexual image and integrity

Existential issues/meaning of life


Depression

Family

Anger

Finances

Sense of

security

Work

Scans and

Tests

Uncertainty

Unknown

Life

Following Cancer

Diagnosis

Hospital

Life

Tons of

Info- Yikes!!

Anxiety

World of

medicine

Loss of

Health

Loss of

control

Body

image

Friends

Fear

  • = Things in your life that existed before cancer that have changed

  • = New practical issues

     = New emotions

Mortality

Self-

Esteem



Perspectives from young adult cancer patients survivors
…Perspectives from young adult cancer patients & survivors

  • Some people are uncomfortable around me.

  • “So, how are you?...Really.”

  • Now what am I going to do with my life?

  • I’m different.


Perspectives from young adult cancer patients survivors1
Perspectives from young adult cancer patients & survivors…

  • 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.”


Bottom line
Bottom line?

Dealing with cancer as a teenager or young adult can be LONELY.


Why a specific focus on adolescents and young adults ayas

Bleyer

Why a specific focus on adolescents and young adults (AYAs)?

Mind the Gap

Thanks to Archie Bleyer, MD,

MD Anderson Cancer Center, Houston, TX

  • Who are they?

    • Ages roughly 15-44

  • Why the special attention?



Characteristics of the 11 4 million survivors
Characteristics of the 11.4 Million Survivors

Estimated Number of Survivors by Diagnosis, 2006

Age Distribution, 2006

<19 Years (1%)

20-39 Years (4%)

Other (11%)

Female Breast (23%)

Thyroid (4%)

Melanoma (7%)

40-64 Years (35%)

65+ Years (60%)

Urinary (7%)

Prostate (20%)

Hematologic(8%)

Colorectal (10%)

Gynecologic(9%)

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


Remarkable past progress childhood cancer mortality 1950 1998
Remarkable Past Progress Childhood Cancer Mortality: 1950-1998

Age < 15 Years

Bleyer, 2006


Remarkable past progress childhood all survival rates 1960 1997
Remarkable Past Progress Childhood ALL Survival Rates: 1960-1997

Age < 15 Years SEER (9 areas)

http://seer.cancer.gov/


Bleyer

2.38%

1.72%

1.60%

AYA Gap

- 0.27%

Relative Change in 5-Year Survival1975 to 1997, SEER

2.4%

The Great Divide

1.8%

Average Annual%Increase

All Age Average = 1.5% / yr

1.2%

0.6%

0%

0

5

10

15

20

30

35

40

45

50

55

60

65

70

75

25

-0.3%

Age at Diagnosis (Years)


Bleyer

Why?

National Cancer Mortality Reduction1990-1998

3%

2.8%

2.6%

Average Annual%

Reduction

1.8%

2%

1.5%

1.5%

1.1%

1%

0.9%

0.4%

0%

0-4

5-9

10-14

15-19

20-24

25-29

30-34

35-39

Age (Years)


Bleyer

Clinical Trial Gap


National Cancer Mortality Reduction, 1990-1998

Bleyer

Accruals

25%

20%

% Mortality Reduction

Cancer Mortality Reduction

15%

3%

10%

5%

p = .001

2%

0%

1,000

10,000

Accruals

1%

0%

National Treatment Trial Accruals, 1990-1998

11689

12,000

7875

8,000

6733

4786

3837

4,000

3532

1491

1071

0

0-4

5-9

10-14

15-19

20-24

25-29

30-34

35-39

Age (Years)

Bleyer, 2006

Clinical Trial Data courtesy of Montello M, Budd T, CTEP, NCI


Bleyer

Health Insurance Gap


Percentage of the u s population 65 years of age who are insured according to age

Bleyer

2.2%

2.0%

1.5%

Ave. Annual % Cancer Mortality Rate Reduction, 1990-1998

1.1%

1.0%

0.9%

0.4%

0%

0-19

20-24

25-29

30-34

35-39

Percentage of the U.S. Population >65 Years of Age who are Insured, according to Age

90

80

% Insured

70

60

50

0-17

18-24

25-34

35-44

45-54

55-64

-

Age (Years)


Bleyer

Referral Gap


Bleyer

Management Sites of Cancer Patients, U.S.

100%

80%

60%

Community Sites

40%

20%

Tertiary Cancer

Centers*

0%

*academic medical centers, etc.

<15

15-40

>40

Age (Years)


Bleyer

Facilities Gap


Bleyer

AYA

Gap

Facilities & Services Gap

Childrens

Hospitals

and

Facilities

Adult

Patient

Hospitals

Community-based

Practices

0

15-19

30-34

70+

Age (Years)


Bleyer

Psychosocial Gap


Psychosocial needs
Psychosocial Needs*

*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.

Support from family and friends

Age-appropriate information

Ability to assume responsibility

Opportunities to meet other YA survivors

Counseling and support


Psychosocial needs1
Psychosocial Needs*

*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



Needs assessment
Needs Assessment with Cancer

  • 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.

  • Assessing the health and supportive care needs of young adult cancer patients and survivors

    • Need for resources and services

    • Unmet need


Who are they n 1 088
Who are they? with Cancern=1,088

Gender

24% male, 76% female

Education

64% College grad

Marital/Partner status

61% married/partner

Current age

40% 18-29

60% 30-39

Employment status

74% employed ft

Work, home, school

Various cancers

23% breast

28% HD; 15% NHL

16% Bone tumors/Other sarcomas

7% Testicular

80% off-treatment

Age at diagnosis

37% 15-24 years

63% 25-35 years

Years since diagnosis

24% < 2 years

49% 2-5 years

27% > 5 years








Conclusions
Conclusions with Cancer

Most YAs want age-appropriate information

Needs for psychological support, self-care, health care and family support are largely unmet


Conclusions1
Conclusions with Cancer

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


The importance of social relationships and peer support

The importance of with Cancersocial relationships and peer support


Cognitive and social development
Cognitive and Social Development with Cancer

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)


Value of peer support
Value of Peer Support with Cancer

  • 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


Peer support opportunities

Coping with uncertainty Dependency versus autonomy with Cancer

Social exclusion, isolation

Body image

Intimacy, sexuality and fertility

Employment, education

Peer Support Opportunities

To address areas of common concern

See Roberts et al., 1997


Young adult survivors conference yasc a peer support model
Young Adult Survivors Conference (YASC) – A Peer Support Model

  • 35 Participants

  • 18-39 years old

  • Diagnosed as AYAs


Program goals

Our Goals Model

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.”

Program Goals


Cancer survivorship a call to advocacy
“Cancer Survivorship: A Call to Advocacy” Model

Self Advocacy

Advocating for Others

Advocating for Society

Keynote Address: Susan Leigh, RN

3-time survivor, advocate


Advocacy training
Advocacy Training Model

Personal Advocacy

  • Self-advocacy: Where it all begins

  • You and Your Doctor

  • Forget about Waldo: Where are those Resources?


Advocacy training1
Advocacy Training Model

Mentor Advocacy: Advocating for Others

  • Becoming a Mentor

  • Do’s & Don’t of Public Speaking

  • Establishing and Maintaining Connections: A Gateway to Community-Building


Advocacy training2
Advocacy Training Model

Community-National Advocacy

  • Advocating at the State and National Level

  • Getting Involved in Public Policy

  • Networking within the Survivorship Community


Becoming an advocate
Becoming an Advocate Model

“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.”


Advocating for oneself
Advocating for Oneself… Model

  • 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


Advocating for oneself1
…Advocating for Oneself Model

  • 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.


Community based and internet based agencies
Community-based and Internet-based agencies Model

Since late 1980s, early 1990s

  • Vital Options

  • Cancervive

  • Leukemia & Lymphoma Society

  • The Wellness Community

  • Gilda’s Club

  • Lymphoma Research Foundation

  • Minnie Pearl Foundation (Tennessee)


Community based and internet based agencies1

Planet Cancer* Model

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”*

Community-based and Internet-based agencies

Since late 1990s

*Founded by Cancer Survivors


Community based and internet based agencies2

Planet Cancer* Model

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”*

Community-based and Internet-based agencies

Since late 1990s

*Founded by Cancer Survivors


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