Download National Coalition for Cancer Survivorship

Survivorship Simplified:
Tools and Resources Across the Continuum
Thomas P. Sellers, MPA
12-Year Cancer Survivor
President and CEO
National Coalition for Cancer Survivorship
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or
distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Objectives
Identify different and changing needs
across the survivorship continuum
 Learn about existing resources for
people diagnosed with cancer
 Understand how to access and use
these resources
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© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or
distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
National Coalition for
Cancer Survivorship
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Founded in 1986 by a diverse
group of leaders in cancer care,
research, support, and advocacy
Began by defining the terms
survivor (anyone with a diagnosis
of cancer and for the remainder of
life) and survivorship (living with,
through, and beyond cancer)
Published Imperatives for Quality
Cancer Care: Access, Advocacy,
Action & Accountability, leading to
the establishment of the NCI Office
of Cancer Survivorship in 1996
Co-Chaired 2005 Institute of
Medicine Lost in Transition report
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or
distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
National Coalition for
Cancer Survivorship
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MISSION: To advocate for quality
cancer care for all people touched
by cancer.
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or
distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Simplifying Survivorship
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Resources for patients/survivors
Trainings and materials for health care
professionals
Information on survivorship issues to key
opinion leaders
Advocacy and advocacy tools
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or
distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
The Survivorship Continuum
Transition:
Post-Treatment
Post Diagnosis
Pre-Treatment
During
Treatment
Communicating
Finding
Information
Making
Decisions
Stress
Insurance
Employment
Solving
Problems
Negotiating
New health
needs
Long term and
late effects
Post-treatment
care
Transition:
End of Life
Communication
Making
Decisions
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be
reproduced, displayed, modified or distributed without the express prior written permission of the copyright
holder. For permission, contact [email protected]
Resources for the Newly Diagnosed
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or
distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
The Cancer Survival Toolbox®
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Free, award-winning audio
(CD) program
Self-learning program that
teaches advocacy skills to
help navigate a cancer
diagnosis
 Teaching a person to fish
vs. giving them the fish
Survivor experiences told
through vignettes using real
situations
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or
distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
The Cancer Survival Toolbox
Basic Skills
 Communicating
 Finding Information
 Making Decisions
 Solving Problems
 Negotiating
 Standing Up for Your
Rights
Special Topics
 First Steps for the Newly
Diagnosed
 Topics for Older Persons
 Finding Ways to Pay for
Care
 Caring for the Caregiver
 Living Beyond Cancer
 Dying Well – The Final
Stage of Survivorship
 Blood cancers (multiple
myeloma, NHL, CLL, CML,
transplant)
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or
distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
The Cancer Survival Toolbox:
Programs for the Newly Diagnosed
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Communicating
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Finding Information
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letting someone else know clearly what you think and
feel and also learning what the other person thinks
and feels
being able to use many of the different resources
available to find information that will help you
understand your kind of cancer and its treatment.
First Steps for the Newly Diagnosed
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information that needs to be gathered and the
decisions that need to be made in the initial days and
weeks after you are diagnosed with cancer
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or
distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Teamwork: The Cancer Patient’s
Guide to Talking With Your Doctor
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Coping with a
diagnosis
Biopsies and tests
Pain relief
Fatigue
Clinical trials
Transitions when
treatment ends
End-of-life issues
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or
distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
You Have the Right to Be Hopeful
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Hope is complex
Hope is defined
differently
Hope is flexible
There is no such thing
as false hope
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or
distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Resources for People In Treatment
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or
distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
The Cancer Survival Toolbox:
Programs for People In Treatment
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Solving Problems
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being able to follow the steps needed to solve a difficult
situation in your life or daily activities
Finding Ways to Pay for Care
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designed to help underinsured or uninsured people who
are having difficulty finding and getting the care that
they need
Caring for the Caregiver
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developed specifically to provide resources and support
for cancer caregivers to help them address the issues
they face on an ongoing basis.
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or
distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
What Cancer Survivors Need to
Know about Health Insurance
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Understand types of
insurance
Know your rights
related to health
insurance
Learn about
important resources
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or
distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Working It Out: Your Employment Rights
as a Cancer Survivor
Most cancer
survivors want
to be able to
perform their
jobs and return
to work after
diagnosis
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or
distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Self-Advocacy: A Cancer Survivor’s
Handbook
How to become
your own best
advocate
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or
distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Resources for People Post-Treatment
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or
distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
The Cancer Survival Toolbox:
Programs for People Post-Treatment
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Living Beyond Cancer
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Cancer survivorship is a day-to-day, ongoing process
that begins with your diagnosis and continues through
the rest of your life. Living Beyond Cancer discusses a
number a important issues that are specific to life
beyond the diagnosis and initial treatment of cancer.
Making Decisions
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Being able to identify how you make decisions, how your
style of decision making can work or be improved, and
how you can weigh the pros and cons of deciding about
cancer treatment
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or
distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Journey Forward:
A Free Cancer Care Planning Program
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or
distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Journey Forward:
A Free Cancer Care Planning Program
All contact
fields have
auto-complete so
users can select
from a list of
previously
entered contacts.
The user can add as
many additional,
custom contacts as
they wish.
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or
distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Journey Forward:
A Free Cancer Care Planning Program
The form contains
a number of dropdown lists to
minimize the
amount of data
inputting that the
user needs to do.
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or
distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Journey Forward:
A Free Cancer Care Planning Program
The table of
chemotherapy
agents is
displayed
automatically,
based on
the regimen
selected.
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or
distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Journey Forward Survivorship
Library:
Searchable database
 Information from trusted sources,
i.e., ACS, ASCO, NCI
 Specific survivorship issues (e.g.,
fatigue, hair loss, fertility)
 Cancer specific articles’
 www.journeyforward.org/library
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© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or
distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Resources for End of Life
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or
distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
The Cancer Survival Toolbox:
Program for People with Advanced Cancer
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Dying Well: The Final Stage of
Survivorship
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Choices and control
Managing expectations
Whether to continue treatment
Symptom management
Dealing with grief
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or
distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Summary
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or
distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Summary
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Survivorship needs change over time.
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Patients should be engaged in the decision
making process and be actively engaged with
the health care team across the continuum.
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Care planning is a vehicle for improving care
through communication and coordination from
diagnosis through the balance of life.
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The resource presented today help equip
survivors and professionals with skills and tools
to effectively work together in a patientcentered way.
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or
distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Thank You!
Thomas P. Sellers, MPA
[email protected]
www.canceradvocacy.org
301-650-9127
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or
distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]