Cancer Survivorship Programs: Bridging the Gap between Primary Care and Oncology

1
Cancer Survivorship ProgramsBridging the Gap
between Primary Care and Oncology

• Patricia Robinson, M.D.
• Assistant Professor
• November 13, 2007

2
Advocacy

• Advocacy is everything
• -Cokie Roberts
• Broadcast journalist
• Political analyst
• Author
• Breast cancer survivor

3
Advocacy

• The need for advocacy in cancer survivors in
  limitless
• 1970 Candlelighters Childhood Cancer Foundation
• 1971 National Cancer Act
• 1977 I Can Cope
• 1982 Susan Komen Breast Cancer Foundation
• 1986 National Coalition for Cancer Survivorship
• 1991 National Breast Cancer Coalition
• 1996 Office of Cancer Survivorship at the NCI
• 1997 Lance Armstrong Foundation-advocate for
  survivors of all types of cancer

4
Three Seasons of Survival

• Acute Survival- diagnosis of the illness and is
  dominated by diagnostic and therapeutic efforts
• Extended survival- period during which the
  patient has terminated the basic rigorous course
  of treatment and enters a phase of watchful
  waiting
• Permanent survival- equated with cure, but the
  patient is indelibly affected by their cancer
  experience
• Fitzhugh Mullan, NEJM, 1985

5
Further Development of the Survivorship Concept

• Live cancer free for many years
• Live long cancer free, but die rapidly of late
  recurrence
• Live cancer free, but develop second primary
  cancer
• Live with intermittent periods of active disease
• Live with persistent disease
• Live after expected death
• Welch-McCaffrey, 1989

6
Cancer Advocacy Issues

• The relatively new field of cancer survivorship
  recognizes that in seeking optimal cancer care,
  survivors struggle to balance their medical,
  personal and financial needs.

7
Cancer as a Chronic Disease

• Cancer is a chronic disease/condition
• People are living longer due to improved access
  to screening, diagnosis, and treatments
• Health care is permanently altered
• Personal relationships change
• Adaptations are made to routines and work

8
Why Cancer is Different from other Chronic
Diseases

• Complex
• Multi-modal
• Multidisciplinary
• Toxic
• Expensive
• Different goals
• Often occurs in isolation from primary health
  care
• Patty Ganz, ASCO, 2004

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Cancer Control Continuum
10
Cancer Control Continuum
11
Estimated Number of Cancer Survivors in the
United States (1971-2002)
Ries LAG, 2005
12
Clegg, L. X. et al. (2002) Cancer Survival among
US Whites and Minorities, Arch Intern Med,
1621985-1993
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Survivorship Equity Including Diverse Communities

• Ethnic minorities equal 33 US population
  growing
• Ethnic minorities equal 20 of the 5year cancer
  survivor population and growing
• Providers within underserved communities have
  limited access to optimal health care resources
• Ethnic socioeconomic status dictate access

14
Survivorship Equity Including Diverse Communities

• Ethnic minorities bear unequal burden
• Health education and advocacy are lacking
• Research participation among ethnic minorities is
  minimal
• Federal and State laws and policies

15
Estimated Number of Cancer Survivors in the U.S.
on January 1, 2004 by Time From Diagnosis and
Gender (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.
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Estimated Number of Cancer Survivors in the U.S.
Diagnosed with Cancer on January 1, 2004 by Site
(N 10.8 M)
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.
17
Estimated Number of Cancer Survivors in the U.S.
on January 1, 2004 by Current Age

(Invasive/1st Primary Cases Only, N10.8M
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.
18
Estimated Number of Female Cancer Survivors in
the U.S. on January 1, 2004 by Site (Invasive /
1st Primary Cases Only, N 5.9 million)
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.
19
Estimated Number of Male Cancer Survivors in the
U.S. on January 1, 2004 by Site (Invasive /
1st Primary Cases Only, N 4.8 million)
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.
20
Institute of Medicine

• 17 member committee developed to address the care
  and quality of life of cancer survivors
• Prevention
• Surveillance
• Intervention
• Coordination

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From Cancer Patient to Cancer Survivor Lost in
Transition

• Psychological distress, sexual dysfunction,
  infertility, impaired organ function, cosmetic
  changes, and limitations in mobility,
  communication, and cognition are among the
  problems faced by many cancer survivors.
• Importantly, the survivors health care is
  forever altered.

22
From Cancer Patient to Cancer Survivor Lost in
Transition

• Awareness needs to be raised for both health care
  providers and the general public.
• It is common now for cancer patients to finish
  their primary treatment unaware of their
  heightened health risks.

23
From Cancer Patient to Cancer Survivor Lost in
Transition

• To overcome this problem, the committee
  recommends that all patients completing primary
  treatment be provided with a Survivorship Care
  Plan that summarizes the patients diagnosis,
  treatment and needed follow-up.

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The Care Plan Issues

• 1) Level of detail of summary
• 2) Level of detail of guidelines
• 3) To whom is it directed
• 4) Will patients find it useful
• 5) Will oncologists, primary care doctors find
  it useful
• 6) Does it need updating?
• 7) Payment

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From Cancer Patient to Cancer Survivor Lost in
Transition

• The committee calls for the development and
  application of survivorship clinical practice
  guidelines and quality of care measures.
• Some guidelines are available for certain aspects
  of survivorship care, but most are incomplete and
  not based on solid evidence.

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Providing a care plan for survivorship

• Patients completing primary treatment should be
  provided with a comprehensive care summary and
  follow up plan
• Cancer type, treatments received and potential
  consequences
• Content of recommended follow up
• Recommendations regarding preventive practices
  and how to maintain health and well being
• Information on legal protections regarding
  employment and health insurance
• availability of psychosocial services in the
  community

27
Developing Clinical Practice Guidelines for
Survivorship Care

• More than 60 of cancer survivors are aged 65 and
  older, so the Centers for Medicare and Medicaid
  Services have a stake in developing clinical
  practice guidelines
• Formal reviews from professional organizations
  may play a role in the developments of guidelines

28
Models of Care

• Shared care model- specialists work
  collaboratively with primary care providers
• Nurse led model in which nurses take
  responsibility for cancer related follow up care
  with oversight from physicians
• Specialized survivorship clinics in which
  multidisciplinary care is offered at one site

29
Research Initiatives

• Research is needed to improve understanding of
  mechanisms of late effects and long term effects
  experienced by cancer survivors and interventions
  to alleviate symptoms and improve function
• The prevalence and risk of late effects

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Late and Long Term Effects

• Long term effects refer to any side effects or
  complications of treatment for which a cancer
  patient must compensate also known as persistent
  effects, they begin during treatment and continue
  beyond the end of treatment.
• Aziz and Rowland 2003

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Late and Long Term Effects

• Late effects refers to unrecognized toxicities
  that are absent or subclinical at the end of
  therapy and become manifest later with the
  unmasking of unseen injury because of any of the
  following factors
• developmental processes
• failure of compensatory mechanisms with the
  passage of time
• organ senescence
• Aziz and Rowland 2003

32
Late and Long Term Effects

• There is limited information on the prevalence of
  long and late effects , but there is a general
  recognition that they have become more common,
  largely as a result of the more frequent use of
  complex cancer interventions, often combinations
  of surgery, chemotherapy, radiation and hormone
  treatments.

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Research Initiatives

• The cost effectiveness of alternative models of
  survivorship care and community based
  psychosocial services
• Interventions to improve the quality of life of
  cancer survivors

34
Unique Challenges to Cancer Survivors

• Psychosocial Support
• Employment
• Financial Costs of Cancer
• Social

35
Psychosocial Support for Cancer Patients

• Individuals with cancer may also experience a
  mental disorder as a result of cancer or
  treatment, or they may experience an exacerbation
  of a prior psychiatric disorder.
• Major depression and depressive symptoms occur
  frequently in cancer patients.
• According to a review of the literature,
  prevalence rates varied from 10 to 25 for major
  depressive disorders, a rate at least four times
  higher than in the general population.
• AHRQ 2002

36
Psychosocial Support for Cancer Patients

• The Office of Cancer Survivorship, NCI reported
  findings from a sub-analysis of the National
  Health Interview Survey that cancer patients were
  more likely have used mental health services than
  patients with other chronic diseases
• Mental health service use was significantly
  greater among those who were under age 65 and
  diagnosed at younger ages, were formerly married,
  or had other comorbid chronic conditions
• JCO, 2002

37
Employment Issues

• As many as one in five individuals who work at
  the time of diagnosis have cancer-related
  limitations in ability to work 1 to 5 years
  later.
• Half of those with limitations are unable to work
  at all.
• All survivors are at risk of experiencing subtle,
  although not necessarily blatant, employment
  discrimination.

38
Cancer Survival and Long-term Effects on
Employment

• One of five survivors reported cancer-related
  disabilities at follow-up.
• Half of those with disabilities were working.
• A projected 13 of all survivors had quit working
  for cancer-related reasons within 4 years of
  diagnosis.
• Three-quarters of those who stopped for treatment
  returned to work.
• More than half of survivors quit working after
  the first year.
• Cancer, 2005

39
Cancer Survival and Employment

• Work
• 32 dealt with lack of advancement
• 34 feel trapped in job because of health
  insurance
• 81 did not make a career change

40
Insurance Issues

• Access to individual health insurance may be
  denied to residents in many states if they have a
  history of cancer.
• Cancer survivors may also face surcharged
  premiums for coverage because of their cancer
  history, depending on where they live and the
  type of coverage they seek.

41
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
• 43 had to deal with decreased income

USA Today/KaiserFamily Foundation/Harvard School
of Public Health (2006)
42
Social Challenges

• Relationships
• 58 had loss or decrease in sexual desire and
  function
• 25 had dating problems

Wolff, SN, Nichols, C, Ulman, D, et al. (2005)
43
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/Harvard School
of Public Health, (2006)
44
Social Impact Across Lifespan Young Adults Age
15 - 29

• Called the orphaned cohort with limited
  follow-up
• Few studies-grouped with children or adults
• Lower representation in clinical trials
• Difficult follow-up given age at diagnosis

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Impact on Social Skills

• Interruption of illness
• Feel out of touch with interests of peers or
  perceive them as superficial
• Problems of dating and developing new
  relationships-fear of rejection
• Being different

46
Planning for the Future

• Hesitancy is universal in cancer, but
  developmental stage is crucial
• Transitions of education, career, relationships
• Practical issues of disruption
• Learning issues or disabilities

47
Body Image and Fertility

• Compromises at a time that differentiates from
  peers
• Decisions about fertility at a time of emotional
  stress and many decisions
• Access to procedures and treatments

48
Relationships with Parents

• Natural separation is stopped
• Equilibrium in relationships is disturbed
• Young adult survivor may feel ill-equipped to
  take on real world responsibilities

49
Insurance and Employment Problems

• Age group is largest for uninsurance with impact
  on follow-up
• Less track record with work
• Job lock at a time of more job movement
• Disability and life insurance
• Debt

50
Social Impact Across Lifespan Adults Ages 30 - 59

• 40 of cancers in this age range
• The sandwich generation
• Prime years of adulthood work and family

51
Social Impact Across Lifespan Older Adults Over
60

• Demographics
• 60 of cancer survivors over 65-most of colon,
  pancreas, prostate, lung, bladder
• Not much research
• Ageism assumptions
• Co-morbid illness
• Less participation in clinical trials

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Social Concerns for the Older Adult

• Retirement-before or after 65
• Fixed incomes and Medicare
• Erosion of retiree benefits
• Remote from social support
• Transportation

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Who should monitor the health of cancer
survivors?

• Recent examination of the SEER database suggest
  that the majority of older breast and colorectal
  cancer survivors in the United States are
  receiving care from both primary care physician s
  and oncology specialists and that preventive
  services are more often received when a primary
  care physician is involved.
• However, cancer screening services are received
  more reliably when an oncology specialist is also
  caring for the survivor

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Quality of Non-Breast Cancer Health Maintenance
Among Elderly Breast Cancer Survivors
Both PCP And Oncologist (n3,075)
Neither PCP nor Oncologist (n221)
Oncologist only (n203)
PCP Only (n2,466)
Mammography Influenza vaccine Lipid testing
Weeks, et al, JCO, 2003
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Relationship Between Type of Physician Follow-up
and Receipt of Preventive Services for Survivors
Neither PCP nor Oncologist (n221)
Both PCP And Oncologist (n3,075)
Oncologist Only (n203)
PCP Only (n2,466)
Cervical exam Colon exam Bone densitometry
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Survivorship Focused Medical History

• Detailed cancer history
• Type of chemotherapy
• Type of radiation and schedule
• Surgical scars are not always indicative of type
  of surgery

57
Family History

• Needs to be updated periodically
• Three generation family history pedigree
• Assess self risk and other family members risk
• Referral to genetic counselor / prevention clinic

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Detailed Review of Systems

• Critical for the detection of late effects of
  cancer treatment, including psychosocial
• Constitutional problems
• Skin
• Ear nose throat
• Pulmonary
• Cardiac and vascular
• Renal
• Gastrointestinal
• Genitourinary
• Gynecologic
• Endocrinology, reproductive
• Hematologic
• Infections
• Musculoskeletal
• Neurologic

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Cardinal Bernardin Cancer Center Cancer
Survivorship Clinic
EARLY FOLLOWUP
SURVIVORSHIPPOST-TX FOLLOW UP
LONG TERM POST-TX FOLLOW UP
DIAGNOSIS
TREATMENT

• CA recurrence
• Screening other cancers
• Sequelae of Tx

Patricia Robinson, MD Patricia Mumby, PhD Kelly
White, RN, BSN,OCN
Oncology Specialist/ Nurse Practitioner
Primary Care Physician
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LUMC Cancer Survivors Clinic

• A weekly specialized clinic for survivors of
  adult cancers in which multidisciplinary care is
  offered at one site.
• We plan to serve patients that have completed
  active cancer therapy and are currently under
  observation by their medical oncologist or
  primary care physician and deemed low risk for
  recurrence.

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Outline of Clinic Visit

• Detailed history and physical examination
• Education on the long term effects of treatment
• Coordination with primary care physician
• Referrals to appropriate sub-specialists
• Prescription of care
• Screening and Follow up recommendations

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Cancer Survivorship Core Components to Address

• Physical effects
• Long term side effects
• Fatigue
• Weight/nutrition
• Sexuality
• Fertility
• Emotional aspects
• Anxiety
• Depression
• Grief
• Dealing with uncertainty
• Financial burdens
• Impact upon family and care givers (education)

64
Expanded Patient Services

• Maximize use of current programs and services
• Support groups and psychoeducational programs
• Nutrition counseling
• Smoking cessation
• Physical rehabilitation

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Identified Specialists Cancer Survivorship
Panel

• Cardiovascular-Ivan Pacold
• Ophthalmology-Charles Bouchard
• Endocrine-Pauline Camacho
• Reproductive Endocrinology-Michael Zinaman
• Pulmonary-Kevin Simpson
• Dermatology-Eva Parker
• Neurocognitive-Margaret Primeau
• Psychology-Pat Mumby
• Neuro-Michael J. Schneck
• Prevention/Genetic counseling-Shelly Lo
• Health Maintenance
• Exercise Cathy Zelinski Executive Director,
  Loyola Center for Health Fitness
• Nutrition-Gretchen Payton
• Smoking Cessation Counseling Program 

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Extracurricular Activities

• Outreach Programs
• Core lecture series
• Late and Long term Effects of Cancer Treatment
• Nutrition/Weight
• Psychosocial challenges of Survivorship
• Patient
• Care givers/family
• Spirituality and Survivorship
• Financial Health for Survivors
• Cancer Genetics and Prevention
• Health Maintenance Cancer Screening and Risk
  Factor Identification
• Fertility and Chemotherapy
• Resource and Education Center

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Conclusions

• Cancer survivors are likely to have comorbid
  illnesses, ADL limitations and functional
  limitations.
• The relatively high prevalence of these
  conditions and limitations poses challenges to
  those providing survivorship care and points to
  the need for the integrated delivery of chronic
  health care and rehabilitation services.

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CBCC Cancer Survivorship Clinic

• The Cancer Survivorship Clinic is dedicated to
  addressing the concerns of cancer survivors.
• The goal is to address the surveillance and
  prevention needs of adult cancer survivors to
  improve the quality of life through psychological
  and physical examination and to empower cancer
  survivors and their family members and care
  givers through education and advocacy.