Taking Cancer Survivorship to a New Level

Dr. Dianne Alber, Clinical Psychologist Carol Frazell RN, BA Admin., OCN,CHPN

NCI 3 rd 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%: Used up all or most of savings • 13%: Borrowed money from relatives • 13%: Contacted by a collection agency • 11%: 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

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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