Transcript Oklahoma Cancer Survivorship Education Program Made possible


Identify the role of the primary care team in caring for the cancer
survivor.

Recognize the communication issues between the health care team
and the cancer survivor.

Recognize the barriers to communication based on literacy levels.

Response to the 2005 IOM Report.

Journey Forward
The OKAHEC Lance Armstrong Survivorship project will address the cancer
survivorship-related objectives of the National Action Plan for Cancer
Survivorship and the implementation plan of the Oklahoma Comprehensive
Cancer Plan by:
1. Educating survivors of cancer how to “live strong” and
navigate their health care.
2. Encouraging health care professionals to improve delivery
of services and increase awareness of issues faced by cancer
survivors.
3. Establishing a sustainable network of partners to continue
educating rural Oklahomans about cancer survivorship
issues beyond the period of the grant project.

The Oklahoma Comprehensive Cancer Network (OCCN)
reports that the cancer incidence rate for Oklahoma has
exceed the U.S. rate.

Estimates are that 18,600 new cases are now diagnosed
per year in Oklahoma
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It is estimated that an additional 65,000 diagnosed
Oklahomans will join the survivor ranks in the next five
years
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39,000 of these new cancer survivors living outside of the
metropolitan areas.
1. SEER Cancer Statistics Review 1975-2007
htttp://seer.cancer.gov/csr/1975_2007/browse_csr.php?section=2&page=sect_02_table.01.html
2. Oklahoma State Department of Health http://www.ok.gov/health/pub/wrapper/ok2share.html
Mortality US
OK
1999
200.7 202.9
2000
198.7
204
2001
195.9 204.1
2002
193.7 203.5
2003
190.1 198.1
2004
185.9
194
2005
184.2 196.6
2006
181.1 194.7
1. SEER Cancer Statistics Review 1975-2007 http://seer.cancer.gov/csr/1975_2007/browse_csr.php?section=2&page=sect_02_table.01.html
2. Oklahoma State Department of Health http://www.ok.gov/health/pub/wrapper/ok2share.html

The definition of cancer survivor used here originated
with the founding charter of the National Coalition for
Cancer Survivorship (NCCS) in 1986:

“From the moment of diagnosis and for the balance of
life, an individual diagnosed with cancer is a survivor.”3

When someone has cancer, family members, friends,
and caregivers are also affected and are sometimes
considered survivors as well. 4, 5
6. SEER Cancer Statistics Review 1975-2007 http://surveillance.cancer.gov/statistics/types/survival.html
Black
6. SEER Cancer Statistics Review 1975-2007
http://surveillance.cancer.gov/statistics/types/survival.html
White
Cancer survival is the proportion of patients alive at some
point subsequent to the diagnosis of their cancer, or from
some point post-diagnosis (conditional survival). It is
represented as the probability of a group of patients
"surviving" a specified amount of time (e.g. 3 years, 5 years,
20 years). 6
6. SEER Cancer Statistics Review 1975-2007
http://surveillance.cancer.gov/statistics/types/survival.html
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Physical
› treatment and sequelae of treatment
› disease process
› body image
› reproduction
› sexuality
› disability
› death
› pain
› sleep disturbance
› general health vulnerability
› nutrition.
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Psychological
› fear of recurrence
› adjustment to physical limitations
› concept of self
› altered interpersonal relationships and roles
› social support
› uncertainty
› Damocles syndrome – happy to be alive but fearful of
what’s hanging over your head.

Spiritual –
› hope (ful/less)
› appreciation for life
› creativity
› abandonment by / closeness to God
› questions and doubts
› purpose
› life after death

Socioeconomic –
› employment
› insurance discrimination
› costs
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Sadness—last more than two weeks and keeps you from
doing what you need to do, you may be depressed.
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Anger— may come from fear, panic, or stress.
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Grief—feeling a loss of what you value most (your loved
one’s health), loss of day-to-day life before cancer.
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Guilt—may think you are not helping enough. Guilty
because you are healthy.
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Loneliness—No one understands your problems, spending
less time with others.
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What is my main problem?
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What do I need to do?
What are my options?
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Why is it important for me to do this?
http://www.npsf.org/askme3/
Let your doctor, nurse, or pharmacist know if you still don't understand
what you need to do.
You might say:
› "This is new to me. Will you please explain that to me
one more time?"
› “I am not sure what you mean. Can you explain it
again?”
› Can you write it down for me?
› “Are you saying that I need to_______?”
› Why am I taking this medication?
› What does this medication do for me?
› How much do I take and how often?
› How long should I take the medication?
› What foods, beverages, and activities should I avoid?
› Is there a generic version that works as good and is less
expensive?
› How should I store this drug?
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I will ask the 3 questions.

I will bring a friend or family member to help me at my
doctor visit.

I will make a list of my health concerns to tell my doctor
or nurse.

I will bring a list of all my medicines when I visit my
doctor or nurse.
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I will ask my pharmacist for help when I have questions
about my medicines.
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Prevention of recurrent and new cancers, and of other late
effects of the disease.
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Surveillance for cancer spread, recurrence, second
cancers, and assessment of medical and psychosocial late
effects
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Intervention for consequences of cancer and its treatment,
medical and psychosocial.
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Coordination between specialists, primary care providers
and the patient to ensure that all the survivor’s health
needs are recognized and met.
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Monitors the patient’s overall health and well-being
throughout the acute, follow-up treatment and beyond.
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Knows patient well enough to detect patient suffering
from new symptoms or symptoms out of the ordinary.

Relied on to explain in a comprehensible way what is
going on with disease and treatment course and plan.
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Has long standing relationship with patient and family.
Typically the one who initially suspects cancer and makes
referral.
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Counsel is often sought before acute treatment is begun to
ensure they are in agreement with recommendations.
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While in treatment, patients and families often visit
primary care physician to discuss overall state of health
and emotional state.

Follows patient for co-existing disease and for new, acute
episodes of illness which may affect management and
efficacy of cancer treatment.
Treatment
Chemotherapy
Radiation therapy
Surgery
Long-term side effects
Fatigue
Menopausal symptoms
Neuropathy
Chemobrain
Heart failure
Kidney failure
Infertility
Liver problems
Late, or delayed, side effects
Cataracts
Infertility
Liver problems
Osteoporosis
Lung disease
Reduced lung capacity
Second primary cancers
Fatigue
Skin sensitivity
Cataracts
Cavities and tooth decay
Heart problems
Hypothyroidism
Infertility
Lung disease
Intestinal problems
Memory problems
Second primary cancers
Scars
Chronic pain
Lymphedema
Source: Mayo Clinic: Original Article: http://www.mayoclinic.com/health/cancer-survivor/CA00073,
10.02.07.
Health Literacy –
the degree to which individuals have the capacity to obtain,
process, and understand basic health information and
services.
Improvement is needed to make appropriate health
decisions and is critical to achieving the objectives set forth
in Healthy People 2020 and, more broadly, key to the
success of our national health agenda. 12
12. National Action Plan to Improve Health Literacy, U.S. Department of Health and Human Services, Office of
Disease Prevention and Health Promotion http://www.health.gov/communication/HLActionPlan/

The plan is based on the principles that:
(1) Everyone has the right to health information that helps them
make informed decisions.
(2) Health services should be delivered in ways that are
understandable and beneficial to health, longevity, and
quality of life.
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The vision informing this plan is of a society that:
(1) Provides everyone with access to accurate and actionable
health information.
(2) Delivers person-centered health information and services.
(3) Supports lifelong learning and skills to promote good health.
• Two decades of research indicate that today's health information is presented in a
way that isn't usable by most Americans.
• Nearly 9 out of 10 adults have difficulty using the everyday health information that
is routinely available in our health care facilities, retail outlets, media, and
communities.1, 2, 3
• Without clear information and an understanding of prevention and selfmanagement of conditions, people are more likely to skip necessary medical tests.
• They also end up in the emergency room more often, and they have a hard time
managing chronic diseases, such as diabetes or high blood pressure.1
1. Nielsen-Bohlman, L., Panzer, A. M., & Kindig, D. A. (Eds.). (2004). Health literacy: A prescription to end confusion. Washington, DC:
National Academies Press.
2. Kutner, M., Greenberg, E., Jin, Y., & Paulsen, C. (2006). The health literacy of America's adults: Results from the 2003 National
Assessment of Adult Literacy (NCES 2006-483). Washington, DC: U.S. Department of Education, National Center for Education
Statistics.
3. Rudd, R. E., Anderson, J. E., Oppenheimer, S., & Nath, C. (2007). Health literacy: An update of public health and medical
literature. In J. P. Comings, B. Garner, & C. Smith. (Eds.), Review of adult learning and literacy (vol. 7) (pp 175–204). Mahwah, NJ:
Lawrence Erlbaum Associates.
• Limited health literacy affects people of all ages, races, incomes, and
education levels
• However, the impact of limited health literacy disproportionately affects
lower socioeconomic and minority groups.
• It affects people's ability to search for and use health information, adopt
healthy behaviors, and act on important public health alerts.
• Limited health literacy is also associated with worse health outcomes
and higher costs.5
5. Berkman, N. D., DeWalt, D. A., Pignone, M. P., Sheridan, S. L., Lohr, K. N., Lux, L., et al. (2004). Literacy and health
outcomes (AHRQ Publication No. 04-E007-2). Rockville, MD: Agency for Healthcare Research and Quality.
Won’t Communicate
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Worry of stimulating feelings of fear or depression in the
other person.
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Belief that ‘not talking’ protects family members from the
harsh realities and consequences of the illness.
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Fear of saying or doing the wrong thing.
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Survivors suppress or bury feelings when family members
avoid listening by turning to safer topics of conversation.
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Either party may feel the need to always be positive and
optimistic.
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Discussion of unpleasant topics upset significant others
and survivors ---don’t want to raise anxiety levels.
Many factors in the current health care system contribute to limited health literacy,
including:
• Lack of coordination among health care providers
• Confusing forms and instructions
• Limited use of multimedia to convey information
• Insufficient time and incentives for patient education
• Differences in language and cultural preferences and expectations between doctors
and patients
• Overuse of medical and technical terms to explain vital information
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Explain things clearly and in plain
language. Use “family room” language.
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Slow down. Listen.
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Focus on key messages and repeat them.
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Use “teach back” to check understanding.
Don’t ask “Do you understand?” Ask, “What
do you understand?”
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Use patient-friendly educational materials,
pictures when possible.
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Use the “Ask Me 3” system. Answer for the
patient:
› This is your main problem right now
› This is what you need to do and here are your
options
› This is why it is important to do this.

Ask the patient, “How do you want me to include
your family in our visits?” Give them the
opportunity to speak privately with you.
Research shows that a few kind words from the
physician can go a long way toward helping people with
cancer to……7
 Understand their treatment
 Stick with it
 Cope better
 Maybe even fare better medically
In 2005 the Institute of Medicine (IOM) released From Cancer
Patient to Cancer Survivor: Lost in Transition.9 Of the report’s 10
recommendations, the one that has gotten the most attention from
professional organizations and grassroots advocacy and survivor
groups is:
* the call for the creation of a survivorship care plan for any
patient who completes initial treatment. 9
Institute of Medicine Report
9
2005
How prepared is the primary care physician to care for the
post-treatment cancer patient (self-report)?
Confidence
Level
Prepared to…
Manage Late
Manage Transition
Effects
of Care
Somewhat
27%
27%
Very
33%
41%
Total
60%
68%
Low Level
Confidence
40%
32%
Institute of Medicine Report 2005
How often do primary care physicians receive end-oftreatment summaries from oncologists for patients they
referred or currently follow?
Received report?
Per Cent
Don’t’ know
15%
Never
23%
Rarely
9%
Sometimes
28%
Almost always
25%
>47%
>53%
Institute of Medicine Report 2005
Does receiving the end-of-treatment summary actually help the primary care
physician care for their patients better (primary care provider self-report)?
“I feel prepared to….”
Received Summary Manage Late Effects
Manage Transition of Care
Never
35%
41%
Rarely
57%
43%
Sometimes
71%
86%
Almost always
84%
90%
Journey Forward is a new program designed for doctors and
their patients who have recently completed active treatment for
cancer. This program was created by a unique collaboration of
organizations with the common goal of improving survivorship
care.
Journey Forward promotes the use of Survivorship Care Plans.
These plans, completed by the Survivor’s oncology team, give
clear steps for care after active treatment. A typical plan begins
with a simple, yet complete, treatment summary and offers
guidelines for monitoring future care. 11
We encourage oncologists and primary care physicians to
implement Survivorship Care into their practices so cancer
Survivors can move forward with the care and support they
need. 13
Journey Forward was created by a collaboration among:
•
•
•
•
•
National Coalition for Cancer Survivorship
UCLA Cancer Survivorship Center
WellPoint, Inc.
Genentech
Lance Armstrong Foundation
About Survivorship Care Planning
A Survivorship Care Plan is a coordinated post-treatment plan
between the Survivor’s oncology team, a primary care physician
and other health care professionals. The oncologist creates a
summary of the Survivor’s treatment and includes direction for
future care.
A typical Survivorship Care Plan includes:
1. patient diagnosis and treatment summary
2. best schedule for follow-up tests
3. information on late- and long-term effects of cancer
treatment
4. list of symptoms to look for
5. list of support resources
This comprehensive medical summary, given to the Survivor
and their primary care physician, helps support better
survivorship care. The plan includes important information for
monitoring possible secondary cancers and any late- or longterm effects of the Survivor’s cancer treatment.
A Survivorship Care Plan also relieves a Survivor from having
to recall all the details of treatment and ensures all future
health care providers are working as a team for the Survivor’s
care. 11
Oklahoma Comprehensive Cancer Network, Oklahoma
State Department of Health
 Oklahoma Cancer Survivors
 Cherokee Nation
 Leukemia and Lymphoma Society
 INTEGRIS Health Systems
 NCI Cancer Information Services
 American Cancer Society
 OU Cancer Center
 Oklahoma Society of Clinical Oncology
 OK Area Health Education Centers (OKAHEC)
 OSU Center for of Rural Health
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1. SEER Cancer Statistics Review 1975-2007
htttp://seer.cancer.gov/csr/1975_2007/browse_csr.php?section=2&page=sect_02_table.01.html
2.
Oklahoma State Department of Health http://www.ok.gov/health/pub/wrapper/ok2share.html
3. Oklahoma Cancer State Plan 2006 – 2010 Cut Out Cancer In Oklahoma.
4. Office of Cancer Survivorship. About cancer survivorship research; survivorship definitions.
National Cancer Institute, U.S. National Institutes of Health. 2006.
http://dccps.nci.hih.gov/ocs/definitions.html.
5. Rowland JH, et al. Cancer survivorship: a new challenge in delivering quality cancer care. J
Clin Oncol 2006;24(32);5101-4
6. SEER Cancer Statistics Review 1975-2007
http://surveillance.cancer.gov/statistics/types/survival.html
7. National Coalition for Cancer Survivorship. Pioneering survivorship: 20 years of advocating for
quality cancer care. 2005 Annual Report. Silver Spring, Md: The Coalition; 2006.
8. ASK ME 3 ™ http://www.npsf.org/askme3
9. Maria Hewitt, Sheldon Greenfield, & Ellen Stovall (Eds.). ( 2006). From Cancer patient
to Cancer Survivor, Lost in Transition. Washington, D.C. Institute of medicine and
national Research Council of the National Academies.
10. IOM, Implementing Cancer Survivorship Care Planning, Washington D.C.: National
Academies Press, 2007
11. National Action Plan to Improve Health Literacy, U.S. Department of Health and
Human Services, Office of Disease Prevention and Health Promotion
12. http://www.health.gov/communication/HLActionPlan/http://www.health.gov/commun
ication/literacy/olderadults/default.htm
13. http://www.journeyforward.org/