Cancer Survivorship The Future is Now

Memorial Sloan-Kettering Cancer Center

Mary S. McCabe

Survivorship Care An International Endeavor

Data source: Altekruse SF, Kosary CL, Krapcho M, Neyman N, Aminou R, Waldron W, Ruhl J, Howlader N, Tatalovich Z, Cho H, Mariotto A, Eisner MP, Lewis DR, Cronin K, Chen HS, Feuer EJ, Stinchcomb DG, Edwards BK (eds). SEER Cancer Statistics Review, 1975-2007, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2007/, based on November 2009 SEER data submission, posted to the SEER web site, 2010

Estimated Number of Cancer Survivors in the United States From 1971 to 2007

Estimated Number of Cancer Survivors in the United States From 1971 to 2007

Estimated Number of Persons Alive in the U.S. Diagnosed With Cancer by Site (N = 10.1 M)

Estimated Number of Cancer Survivors in the U.S. on January 1, 2004 by Current Age

(Invasive/1st Primary Cases Only, N=10.8M survivors)

Data source: Ries LAG, Melbert D, Krapcho M, Mariotto A, Miller BA, Feuer EJ, Clegg L, Horner MJ, Howlader N, Eisner MP, Reichman M, Edwards BK (eds). SEER Cancer Statistics Review, 1975-2004, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2004/, based on November 2006 SEER data submission, posted to the SEER web site, 2007.

Current Focus on Survivorship

• Greater emphasis on patient-centered issues by the medical community- quantity AND quantity of life

• Increasing expectations by patients for good quality of life

• Rapid increase in the number of elderly Americans – By 2020, 1 in 6 Americans will be elderly

• Cancer is seen as a chronic disease

• Implementation of health care reform – Reassessment of our care delivery models in general

– Focus on cost as it relates to quality

Survivorship Defined

• Ideal – Individuals who are 5 or more years beyond diagnosis (Mullan)

– Anyone who has been diagnosed with cancer through the balance of his or her life (NCCS)

– Including friends, family members and caregivers (NCI)

• Pragmatic – Period in which patients treated with curative intent have completed

their initial therapy and require follow-up care (Ganz, 2006)

– Period until recurrence, second cancer, or death and may include some ongoing treatment, such as hormonal therapy. (IOM, 2006)

Cancer and its Treatment Domains of Concern

• Physical/medical – Organ toxicity and second cancers

• Psychological – Fear of recurrence, anxiety and depression

• Social – Changes in relationships, economic and education issues

• Existential and spiritual – Loss or deepened meaning in life

• Informational – Need for ongoing, comprehensive information

Cancer control continuum-revisited (Courtesy of the National Institutes of Health).

Campo R A et al. Cancer Epidemiol Biomarkers Prev 2011;20:2317-2324

©2011 by American Association for Cancer Research

Late medical effects of treatment depend on the type of therapy . . .

and the specific toxicities/organ interactions of each therapy

Radiation Therapy

Surgery

Chemotherapy

Medical Challenges

• Bone and soft tissue

• Cardiovascular

• Dental/oral

• Endocrine

• Gastrointestinal

• Genitourinary

• Hematologic

• Hepatic

• Immune system

• Integumentary

• Musculoskeletal

• Nervous system

• Neurocognitive

• Pulmonary

• Renal

• Reproductive

• Second malignancies

Physical Symptoms

• Pain and discomfort

• Cognitive changes

• Bone health

• Neuropathies

• Fatigue and sleep-wake disturbances

• Sexuality and reproductive issues

• Reproductive hormonal imbalances

Lester, J & Schmidt, P (2011). Cancer rehabilitation and survivorship: Transdisciplinary approaches to personalized care. Pittsburgh, PA: Oncology Nursing Society.

Psychological Challenges

• Fear of recurrence

• Depression/depressed mood

• Anxiety

• Post-traumatic stress syndrome (PTSD)

• Body image disturbances

• Changes in relationships

Practical Challenges

• Personalization of information and care

• Economic burden

• Employment

• Family and children-related issues

Lester, J & Schmidt, P (2011). Cancer rehabilitation and survivorship: Transdisciplinary approaches to personalized care.

Pittsburgh, PA: Oncology Nursing Society.

Listening to Survivors Lance Armstrong Foundation LIVESTRONG™ Poll n=1020

• Secondary Health Problems – 53% - secondary health problems

• 54% - deal with chronic pain

• 33% - infertility

• Non-Medical Support – 49% - non-medical cancer needs were unmet

– 53% - practical and emotional consequences of cancer are often harder than medical issues

• Emotional Support – 70%- dealt with depression

– 78% - did not seek professional services

• Relationships – 58%- dealt with loss of sexual desire and/or sexual function

Listening to Survivors Lance Armstrong Foundation LIVESTRONG™ Poll n=1020

• Financial Problems – 43% - decreased income as a result of cancer

– 25% - in debt as a result of treatment

– 12% - turned down a treatment option because of cost

• Job Issues – 32% - lack of advancement, demotion or job loss

– 34% - trapped in job to preserve insurance coverage

• As a result of cancer diagnosis: – Did not start participating in sports 86%

– Did not move to a new location 86%

– Did not make a career change 81%

– Did not travel someplace special 71%

Listening to Survivors Information Needs

• Cancer Survivors Study N=752

– 6 different cancer sites

• Bladder, breast, colorectal, prostate, uterine, melanoma

– 3-11 years post diagnosis

– Information needs

• Overall quality of information received – 38% rated the information provided as fair to poor

• Information about long-term side effects – 36% rated the information provided as fair to poor

Report from ACS Studies of Cancer Survivors, 2008

Cardiopulmonary Challenges

• Damage can be caused by specific treatments

• Long-term complications include - cardiomyopathy

- pericarditis

- congestive heart failure

- valvular heart disease

- premature coronary artery disease

Smith, L. (2011). Cardiopulmonary challenges. In J. Lester & P. Schmidt (Eds.), Cancer rehabilitation and survivorship: Transdisciplinary approaches to personalized care. Pittsburgh, PA: Oncology Nursing Society.

Cardiopulmonary Education

• Educate the survivor and PCP about risks

• Educate about reportable symptoms – Weight gain

– Peripheral edema

– Shortness of breath

– Dyspnea on exertion

– Decreased activity tolerance

– Extreme fatigue

– Rapid or irregular heartbeat, palpitations

– Wheezes

Smith, L. (2011). Cardiopulmonary challenges. In J. Lester & P. Schmidt (Eds.), Cancer

rehabilitation and survivorship: Transdisciplinary approaches to personalized care. Pittsburgh, PA: Oncology Nursing Society.

Bone Health

• Common causes of bone loss that result in osteopenia and osteoporosis

- aging

- menopause

- cancer treatment

• Secondary causes

- vitamin D deficiency

• Risk factor – history of fractures

Lustberg, M. & Shapiro, C. (2011). Optimizing bone health in adult cancer survivors. In J. Lester & P. Schmidt (Eds.), Cancer rehabilitation and survivorship: Transdisciplinary approaches to personalized care. Pittsburgh, PA: Oncology Nursing Society.

Common Concerns Among Cancer Survivors

Cognitive Dysfunction

Depression

Insomnia

Fatigue

Fatigue

• Description

– Reported by 60-110% of patients undergoing cancer treatment

– 50% at diagnosis

– Can have a long duration

– Can impact quality fo life

• Causes

– Surgery, chemotherapy, radiation, or biological therapy

– Other medications

– Other medical conditions

Fatigue

• Management

– Get adequate sleep

– Participate in physician approved exercise

– Eat a healthy, well-balanced diet

– Consider other health conditions

• Underactive thyroid

• Anemia

• Anxiety

• Depression

Fatigue & Sleep-Wake Disturbances

• Overall, the most common symptom in cancer survivors

• Can result in – lower physical, social, cognitive, & vocational

functioning

– adverse mood changes

– emotional distress

– amplification of current symptoms

Berger, A. M. & Mitchell, S.A. (2011). Cancer-related fatigue and sleep-wake disturbances. dIn J. Lester & P. Schmidt (Eds.), Cancer rehabilitation and survivorship: Transdisciplinary approaches to personalized care. Pittsburgh, PA: Oncology Nursing Society.

Bower, J.E. (2008). Behavioral symptoms in patients with breast cancer and survivors. Journal of Clinical Oncology, 26, 768-777/

Anxiety and Uncertainty

• Common for all patients to experience anxiety with a cancer diagnosis

• Incidence of chronic anxiety is at least 30%

• Uncertainty is defined as - ambiguity - unpredictability - fluctuating course of disease - incomplete information and explanations - vague feedback about prognosis

Maars, J.A. (2006). Stress, fears, and phobias: The impact of anxiety Clinical Journal of Oncology Nursing 10,

319-322.

Sheldon, L.K. & Barnett, M. (2011). Anxiety and uncertainty. In J. Lester, & P Schmidt (Eds.) Cancer

Rehabilitation and Survivorship: Transdisciplinary Approaches to Personalized Care. Pittsburgh, PA:

Oncology Nursing Society.

Cognitive Dysfunction

• Chemotherapy related

– Subjective and objective components

• Impacts quality of life

• Causes

– Chemotherapy

– Anxiety and depression

– Fatigue

– Age

– Medications

Cognitive Dysfunction

• Management

– Management fatigue and sleep disturbances

– Behavioral strategies

• Improved organization

• Lists

• Work on puzzles

– Several medications are being studied

Sexuality & Reproductive Issues

Survivors report that insufficient and untimely information is given to them about sexual functioning

Cancer survivors expect to return to a sense of self as a sexual person

after treatment ends Survivors are desexualized by professionals Fertility issues are under-discussed & at wrong time

Gallo-Silver, L., & Dillon, P.M. (2011). Klemanski, D. & Lester, J.L. (2011).Sexuality and reproductive issues. In J. Lester & P. Schmidt (Eds.), Cancer rehabilitation and survivorship: Transdisciplinary approaches to personalized care. Pittsburgh, PA: Oncology Nursing Society.

Spirituality

Spirituality as a source of comfort – Important consideration in compassionate care

– Patients rely on spiritual beliefs as a way of finding meaning

– Addresses common human need for certainty

Spirituality as a resource in survivorship

– Perspectives in life are altered – Redefine meaning in life – Find hope and sense of well-being

Fobair, P. (2011). Spirituality and cancer survivorship In J. Lester, & P Schmidt (Eds.) Cancer Rehabilitation and Survivorship: Transdisciplinary Approaches to Personalized Care. Pittsburgh, PA: Oncology Nursing Society

Is There an Architect in the House?

National Direction for Cancer Survivorship Initiatives

Institute of Medicine Report

• Establish survivorship as a distinct phase of care • Implement survivorship care plans • Build bridges between oncology and primary care • Develop and test models of care • Develop and evaluate clinical practice guidelines • Institute quality of survivorship measures • Strengthen professional education • Expand use of psychosocial and community support services • Invest in survivorship research

Executive Summary From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, D.C.: The National

Academies Press; 2006.

Survivorship Care Usual Practice

• Follow-up by oncologists is routine

• Patients find it reassuring

• Duration of follow-up is variable

• Follow-up guidelines are limited and recent

• Follow-up care focused on surveillance for recurrence

• Limited transfer of knowledge and information to primary care provider

Long Term Follow-up Programs Rationale

• A need to figure out how to care for the large number of individuals in follow-up – Who needs what, when and for how long

• Greater understanding of the consequences of cancer and its treatment

• Focus on the application of interventions to eliminate/reduce sequelae

• Improved communication needed between clinicians

Renovations Come in All Sizes

Listening to Survivors

• Consider

– care/services that are organized around the needs and preferences of patients

• Educate

– survivors about the things they can actively do on their own

– Provider groups about the long term and late effects of blood cancer treatments and their management

• Encourage

– survivors to be actively involved in their own care

Models of Care Providers

• Physicians

– Oncologist

• Pediatric

• Medical

– Primary care

• Nurses – Oncology experience

– Non-oncology experience

• Nurse practitioners/ physician assistants

– Oncology expertise

– Primary care expertise

• Combined MD/NP team

Models of Care Clinical

• Multidisciplinary

– Pediatric setting

• Disease/treatment specific

– Large groups of patients or unique therapies, such as transplant

• Consultative

– One time visit that consolidates information about follow-up and a treatment summary/ care plan is provided

• Integrated care

– Ongoing follow-up with a focus on comprehensive survivorship services, usually by an NP or PA

Multidisciplinary Clinic •Patients seen/evaluated by different providers during one clinic visit

•Oncology, endocrinology, neuropsychology, neurology, social work, etc.

Advantages Challenges Common pediatric model Resource intense

Easy for patients Difficult to coordinate

Comprehensive Not everyone needs all services

Good model for complex patient (brain tumors)

Disease/Treatment Specific Clinic •Survivorship clinic for specific disease category (breast)

•Stem cell transplant patients frequently seen in separate clinic from general oncology

•Can be developed for psychosocial services only

Advantages Challenges Good way to begin Inequality

Focused scope of practice Omit survivors with greatest needs

Easier to develop consensus guidelines for follow-up

Good model for complex patients

Consultative Service •One time consult visit to cover general survivorship issues and distribute treatment summary/care plan

•Some may see annual returns

•Referral to subspecialist, PT, nutrition, psych, etc

•Establish primary care home for survivor

Advantages Challenges Serves unrestricted survivor population, outside referrals

Difficult to be “expert” in long term f/u issues for all diseases

Provides core service, tx summary/care plan

Difficult to have consensus guidelines for f/u for all

Reinforces need for primary care f/u and transition out of cancer clinic setting

Buy in from multiple different oncologist for patient referral difficult

Tool Kit Visit

• Treatment summary and care plan

• Cancer screening recommendations

• Healthy living counseling – Smoking cessation

– Diet

– Exercise

• Insurance, employment and financial information

• Referral to rehabilitation and social services

Integrated Care Model •Survivorship visit imbedded in the oncology clinic where the patient was treated

•Survivorship Nurse Practitioner

•Ongoing care

Advantages Challenges Easy transition for patients Requires busy clinical practice to

justify

Access to treatment history Patients may be reluctant to transition to primary care

Works well for surveillance of recurrent/new cancer as well as for late effects

Shared-Care Model Components

• Care shared by two or more clinicians of different specialties • Common understanding of expected components of care and

respective roles • Knowledge transfer

– Clinical summary • Specific information on disease • General information about treatment

• Communication channels – Contact information for oncology physicians and nurses

• Active patient involvement – Encouraged to contact primary care physician with problems – Provided with the information given to the primary care physician

Renders et al: Diabet Med 20:846-852, 2003; Jones et al: Am J Kidney Dis 47: 103-114, 2006 Neilsen et al: Qual Saf Health Care 12(4) 263-272.

Cancer Survivorship

It’s about Rehabilitation Physical

Psychosocial

Spiritual

Survivorship

Services

Psychosocial

Counseling Physical

Therapy

Integrative

Medicine

Support

Groups

Smoking Cessation

Fertility Preservation

Palliative Care

Genetic Counseling

Sexual Health

Health Promotion

• Diet

• Exercise

• Smoking Cessation

New York Times Blog Life Interrupted, Suleika Jaouad

• “On the rare occasions I initiated the conversation myself, talking about sex and cancer felt like a shameful secret.”

• A friend describes “her oncologist’s visible discomfort when she asked him about safe birth control methods.”

• “The way women with cancer are being educated about their sexual health is not by their health care providers but on their own.”

Fertility Preservation Program Structure

Patients informed

and referred if interested

Resources for

patients

Resources for

clinicians

Education of

clinicians

Clinical Nurse

Specialist

Journey Forward: Supporting Survivors and Providers

FROM OUR SURVIVORSHIP EXPERTS

Video presentations featuring MSKCC survivorship experts- physicians, nurses, social workers,

psychologists, and physical therapists – address a range of physical, social, practical and personal

concerns faced by cancer survivors. These videos are available free of charge on MSKCC’s Living

Beyond Cancer Web Site (www.mskcc.org/ptrpwebcasts), the MSKCC Survivorship YouTube

Chanel and the iTunes MSKCC Survivorship Podcast station.

CURRENT PRESENTATIONS INCLUDE:

Day-to-Day Coping with Lymphedema

The Importance of Exercise in Cancer Survivorship

Why Don't They Hear Me? Communicating with Friends and Family After Treatment Ends

SOON TO COME:

Changes in Thinking and Memory by Tim Ahles, PhD

Coping and Survivorship by Jimmie Holland, MD

We’re All in This Together