Download Survivorship must be viewed less as a period of acute symptoms

Gilbert Almanza, RN, MSN, AOCNP
Oncology Nurse Practitioner
Horizon Oncology
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I. Definition of Survivorship
II. Purpose of Survivorship Movement
III. Factors that Impact Survivorship
IV. Treatment Summary and Plan
V. Roles in Survivorship Care
“If you’re going through hell, keep
going.”
Winston Churchill, British statesman,
1874-1965
National Coalition for Cancer Survivorship:
“Survivorship starts at the time of diagnosis,
and proceeds along a continuum through and
beyond treatment, recurrence, cures, and final
stages of life regardless of its cause.”
Extended definition includes
“caregivers, family, and friends”
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Estimated 12 million cancer survivors in
United States in 2012.
Expected to grow to 18 million by 2022
Sixty-five percent diagnosed in last 5 years.
Twenty-five percent in 5-10 years
Fifteen percent within last 20 years
American Cancer Society, 2012
Long term remission by site:
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Breast
Uterine corpus
Colorectal
Melanoma
Thyroid
41 percent
8 percent
8 percent
7 percent
6 percent
International Agency for Research on Cancer, 2013
Long term remission by site:
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Prostrate
43 percent
Colorectal
9 percent
Melanoma
7 percent
Bladder
7 percent
Non-Hodgkin Lymphoma 4 percent
International Agency for Research on Cancer, 2013
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Many cancer survivors who are experiencing
cures.
Others who may experience long term
remissions lasting decades.
Those with multiple episodes of retreatment
during remission periods.
Almost half of survivors are over 70 years old.
Five percent are under the age of 40 years.
American Cancer Society, 2012
“Survival rates, while justifiably important in
themselves, cover only a portion of the total
problem. These rates do not relate to how the
patient survives; at what cost to his/her
physical functioning; how he/she is fulfilling
his role in family, work, among friends, and
in the wider society…”
Izask and Medalie, 1971
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Confusion over chemotherapy/biological
therapies they received.
Confusion over management of side effects
from therapy.
Confusion over who to see when experiencing
new symptoms.
Difficulty with financial issues regarding
treatment and surveillance.
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Uncertainty over surveillance schedule.
Uncertainty over impact on future
employment.
Unclear information on changes in physical,
mental, spiritual, emotional, sexual, and social
domains.
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1986
Survivorship movement started with
formation of National Coalition of Cancer.
Survivors.
1996
Development of the office of cancer
survivorship in the National Cancer Institute.
2005
Institute of Medicine Report “Cancer
Patient to Cancer Survivor: Lost in Transition”
published.
2012
Development of CoC Accreditation
Standards requiring Careplans, psychosocial
assessment, and patient navigators.
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Declining number of oncologists as number of
survivors continues to climb.
Increased involvement of primary care
providers in management of survivors care.
Increased importance of communication and
collaboration between oncologists and primary
care providers.
Limited research on best way to provide
follow-up care for cancer survivors.
Medscape, 2013
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Establish awareness of survivor needs.
View survivorship as a distinct phase of cancer
care.
Provide comprehensive care summary and
follow up plan. Should be reimbursed.
Use evidence-based systematic guidelines,
assessment, and screening tools to identify and
manage late effects from cancer/treatment.
IOM, 2005
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Quality measures should be developed.
Support demonstration models.
Congress should support CDC development of
cancer control plans.
Expand educational opportunities for
healthcare providers to address survivor
issues.
Eliminate job discrimination, minimize effects
of cancer on employment, and support
survivors during short-term or long-term
inability to work.
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Provide access to adequate and affordable
health insurance.
Recognize survivorship as an essential part of
cancer care and planned benefits, and
payment/reimbursement mechanisms to
facilitate coverage of evidence-based care.
Increase and expand support for survivorship
care research.
“Survivorship must be viewed less as a period of acute
symptoms and more as a dynamic, life long process.
And just as we prepare for treatment and potential
side effects we must also prepare for long term
survival…
Survival is not a singular aspect of one’s life but
rather an accumulation of physical, psychological,
sexual, social and spiritual responses to changes
which have evolved from the cancer diagnosis and
its treatment”
Pelusi, 1981
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Prevention of recurrent or new cancers.
Prevention of late effects from treatment.
Surveillance of recurrent, late effects, or
secondary cancers.
Interventions for physical and psychosocial
distress from cancer treatment.
Evaluation of concerns of employability,
insurance, and disabilities.
Collaboration and coordination of multiple
care providers to meet specific survivor’s
needs.
IOM, 2005
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Comprehensive survivorship care plan that
includes:
 Follow-up plan for surveillance.
 Treatment summary
 Collaboration and communication with
survivor’s primary care provider.
 Health promotion.
 Psychosocial support and interventions.
 Financial support and education.
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Guidelines for site specific cancers and stages
related to the survivor.
Focus should be on prevention and early
detection of recurrent cancer and new cancers.
Additional assessment for late effects from
treatment.
IOM, 2005
Detailed information on chemotherapy drugs
used or radiation doses.
 Pathology reports.
 Surgical reports.
 Most recent scans.
 List of potential short-term, long-term, and
late effects from treatment.
Potential long term effects from disease.
IOM, 2005
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Most often resolving acute side effects from
therapy.
Need to ensure not evolving into long-term
effect.
Examples would be nausea and/or vomiting.
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These effects can be experienced during the
treatment phase and may last into the
survivorship phase.
May require referral to other specialties for
continued intervention and assessment.
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Psychosocial
Medical
Financial
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Impact on general quality of life from
Depression
 Anxiety
 Fatigue
 Cognitive limitations
 Sleep problems
 Pain
 Sexual dysfunction
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Is affected by:
Co-morbid conditions
 Cardiovascular health
 Neurologic conditions
 Endocrine disease
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Future quality of life is affected by:
High out-of-pocket medical expenses
 Inability to pay for future medical care
 Bankruptcies
 Loss of savings
 Disability
 Employment problems
 Insurance denial
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Provide preventive care incorporating lifestyle
modification:
Exercise
 Smoking cessation
 Healthy diet
 Alcohol cessation
 Stress management
 Genetic counseling
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Multi-directional communication between
oncologist, primary care provider, patient, and
other care-givers
Input from team members to problem solve
and support decision making
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We haven’t been meeting all of their needs up
till now
Once their cancer treatment is done, we used to
say goodbye,
In the meantime, support groups have been
organized and have been helping
But, survivorship care has been split among
many groups
Now, we need to think of the long-term
treatment needs of the patient and put
everything together
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“It is not enough that we do our best;
sometimes we must do what is
required.”
Winston Churchill, British statesman 1874-1965
And cancer patients have been telling
us for many years, we need to
“Git r done”
Larry the Cable Guy, comedian, 1963-