Download Taking Cancer Survivorship to a New Level

Taking Cancer Survivorship to
a New Level
Dr. Dianne Alber, Clinical Psychologist
Carol Frazell RN, BA Admin.,
OCN,CHPN
NCI 3rd Survivorship Education for
Quality Cancer Care Conference
• 53 teams including 155 participants
• Physicians, psychologists, nurses and
social workers
• Overview of survivorship needs
• Reports from past participant teams on
survivorship activities in progress
• Train the trainer
• Analyze own institution and begin to set
survivorship goals for own institutions
Survivorship is becoming an expectation of
centers offering quality cancer care.
Four Essential Components of a
Survivorship Program
• Prevent recurrent cancers and side effects
• Surveillance for cancer spread, second
cancers, and late and long term effects
• Intervention of cancer effects such as
lymphedema and neuropathy
• Coordinate post treatment care between
specialists and primary care providers so
that we can optimize the survivor’s quality
of life
The NCI established an Office of
Cancer Survivorship in 1996.
NCI Survivorship Goals
• Enhance the length and quality of survival
of all cancer survivors
• Support research that helps us
understand, prevent, or reduce adverse
physical, psychosocial, and economic
outcomes associated with cancer and its
treatment
• Educate professionals about issues
related to cancer survivorship
NCI Survivorship Goals (continued)
• Identify, examine, prevent, and control
adverse cancer-treatment-related
outcomes
• Provide a knowledge base regarding
optimal follow-up care and surveillance of
cancer survivors
• Optimize health after cancer treatment
Cancer Survivors- Who are they?
• There are 11 million cancer survivors in
the United States
• 60% are age 65 or older
• 40% are age 40-64
• 5% are 20-39
• 1% are <19
• 64% of newly diagnosed cancer patients
expect to survive beyond 5 years after
diagnosis
What are Cancer Survivors telling
us?
• They want to know what they need to do
to stay healthy.
• They are worried about insurance and
money.
• They are worried about their family.
• They want to return to a
normal life.
That’s all cancer patients
want!
What are some of the challenges
Cancer Survivors face?
• Relationship Changes
– 58% had loss or decrease in sexual
desire and function
– 25% had dating problems
• Financial Challenges
– 43% had to deal with decreased income
– 25% went into debt
2005 ASCO Annual meeting, Health Services Research, SN Wolff, C Nichols, D Ulman, A Miler, S Kho. Armstrong 1020 self-identified cancer
survivors
Challenges (continued)
Employment challenges
• 32% deal with lack of advancement
• 34% feel trapped in a job because of
health insurance
• 81% did not make a career change
2005 ASCO Annual meeting, Health Services Research, SN Wolff, C. Nichols, D Ulman, A Miler, S Kho. L Armstrong
1020 self-identified cancer survivors
Family Impact of Dealing with
Cancer
Percent saying the experience had the
following effects on their family
• 32%: Caused someone in family to have
psychological problems
• 25%: Caused severe strains with other
family members
• 22%: Caused someone in family to have
a lower income
• 19%: Caused someone to lose or change
jobs
USA Today/Kaiser Family Foundation/HarvardSchool of Public Health, conducted August 1-September 14, 2006, 930 respondents who have someone in home who has been diagnosed with cancer
Financial Costs of Cancer
•
•
•
•
25%:
13%:
13%:
11%:
Used up all or most of savings
Borrowed money from relatives
Contacted by a collection agency
Sought the aid of a charity or public
assistance
• 11 %: Borrowed money/ got a loan
USA Today/KaiserFamily Foundation/Harvard School of Public Health
Getting Started
• Identify the physical and psychological
effects of cancer and its treatment
• Develop a plan to manage these effects
• Develop health promotion
recommendations
• Create a treatment summary and follow-up
care plan for patients
• Develop an exit interview process
Post Treatment Late Effects
Late Effects are toxicities of treatment
that are absent or sub clinical at the
end of therapy but manifest later.
– Injury to organs or failure to compensate
– Second Cancer
– Abnormal liver or renal function
Post Treatment Long Term Effects
Long Term Effects are chronic or persistent
effects that appear during treatment and
continue beyond treatments end.
– Cancer related fatigue
– Peripheral Neuropathy
– Cognitive challenges
.
Dimensions of Quality of Life
• Physical Well-Being & Symptoms
– Functional Ability
– Strength/Fatigue
– Sleep & Rest
– Nausea
– Appetite
– Constipation/Diarrhea
– Neuropathy
Psychological Well Being
•
•
•
•
•
•
•
Control
Anxiety
Depression
Enjoyment/Leisure
Fear of Recurrence
Cognition/Attention
Distress of Diagnosis and Treatment
Social Well Being
Family Distress
Roles & Relationships
Affection/Social Function
Appearance
Enjoyment
Isolation
Finances
Work
Spiritual Well Being
•
•
•
•
Meaning of Illness
Religiosity
Hope
Uncertainty
NCI Community Cancer Centers
Program
General Areas for Survivor follow-up care
Prevention
1. Promote Good Health Behaviors
2. Diet
3. Smoking Cessation
4. Lifestyle Changes
5. Physical Activity
Exercise Therapy for Cancer
Patients
• Emerging research shows that cancer patients
who exercise experience decreased risk of
treatment-induced fatigue, lymphedema,
depression, and anxiety, as well as improved
functioning and greater self-reported overall
wellbeing and quality of life.
Watch Interviews, 7/15/08; 8.28.08; Lance Armstrong Foundation website, accessed 9/10/08
Follow-up Care (continued)
Detection
1. Follow-up care
2. Screening for recurrence or second
cancers
3. Comorbid conditions
4. Screening for high risk families
Follow-up Care (continued)
Management of Long Term and Late Effects
• Pain
• Cognitive Function
• Sleep Disturbance/Fatigue
• Sexual Dysfunction
• Organ Function (Renal/Cardiac)
• Family needs-psychosocial/caregiver
burnout
Who provides the care to meet
Survivors needs?
• Prevention
• Detection/Surveillance
• Management of Late and Long Term Side
Effects
PCP vs. Oncologists
• Primary Care Physicians follow-up on
conditions such as diabetes and heart
disease
• Oncologists follow-up on prevention
behaviors, detection and management of
the late and long term effects of cancer
treatment
How do we meet those needs?
• Providing the necessary care within the
framework of your institution
• Find the best models of care
Models of Care
• Shared Care Model
• Disease Specific Cancer Survivor
Programs
• Comprehensive Survivor Programs
Shared Care Model: PCP vs.
Oncologists
• Primary Care Physicians follow-up on
general conditions such as a cold; may
refer patient to internist for diabetes, heart
disease and other related health
conditions, etc.
• Oncologists manages cancer detection,
prevention and management of cancer
side effects
Disease Specific Model
Example: Colorectal Team follow-up and
management of cancer survivorship plan
• Colorectal Surgeon
• Medical Oncologist
• Radiation Oncologist
• Colorectal Nurse Coordinator or Navigator
Comprehensive Cancer
Survivorship Model
Use Multidisciplinary Team approach to care
• Surgeon
• Oncologists
• Nurse Coordinator or Navigator
• Psychologist
• Dietician
• Wound and Ostomy Nurse
• Social Worker
Cancer Survivorship Tools
• Summary of Cancer Treatment and
Follow-Up Plan
• Survivorship Patient Assessment
• Cancer Survivorship Interview
• When you do nothing, you feel
overwhelmed and powerless. But when
you get involved, you feel the sense of
hope and accomplishment that comes
from knowing you are working to make
things better.--Pauline R. Kezer