Cancer Survivorship Programs

Cancer Survivorship Programs: Bridging the Gap between Primary Care and Oncology Patricia Robinson, M.D. Assistant Professor November 13, 2007 Advocacy “Advocacy is everything” -Cokie Roberts Broadcast journalist Political analyst Author Breast cancer survivor 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 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 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 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. 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 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 Cancer Control Continuum Prevention Early Detection Tobacco control Diet Physical activity Sun exposure Virus exposure Alcohol use Chemoprev ention Cancer screening Awareness of cancer signs and symptoms Diagnosis Treatment End of life care Palliation Spiritual issues Hospice Oncology consult Tumor staging Patient counseling and decision making Chemotherapy Surgery Radiation therapy Adjuvant Therapy Symptom management Psychosocial care Cancer Control Continuum Prevention Early Detection Tobacco control Diet Physical activity Sun exposure Virus exposure Alcohol use Chemoprev ention Cancer screening Awareness of cancer signs and symptoms Diagnosis Treatment Survivor ship Long term follow up Late effects management Rehabilitation Coping Health promotion End of life care Palliation Spiritual issues Hospice Oncology c/s Tumor staging Patient counseling and decision making Chemotherapy Surgery Radiation therapy Adjuvant Therapy Symptom management Psychosocial care Estimated Number of Cancer Survivors in the United States (1971-2002) 10 9 8 7 6 5 4 3 2 1 0 1971 1975 1979 1983 1987 1991 1995 1999 2002 Ries LAG, 2005 5-year Cancer Survival Rates by Ethnicity 70 60 50 40 30 20 10 0 Percent (%) Males Females White Hispanic Black Asian Am Indian Clegg, L. X. et al. (2002) Cancer Survival among US Whites and Minorities, Arch Intern Med, 162:1985-1993 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 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 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) 2.5 People in millions 2.0 1.5 1.0 0.5 0.0 0 to <5 5 to 10 10 to<15 Males Females 15 to<20 20 to<25 ≥ 25 Years from Diagnosis 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. Estimated Number of Cancer Survivors in the U.S. Diagnosed with Cancer on January 1, 2004 by Site (N = 10.8 M) Female Breast 15% 3% 6% 7% 23% Prostate Colorectal Gynecologic Hematologic (HD,NHL,Leukemia, ALL, Myeloma) Urinary Tract (Bladder, Kidney, Renal Pelvis) Melanoma Lung and Bronchus 19% 8% 9% 10% Other 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. 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) <19 Years 1% 20-39 Years 5% 65+ Years 60% 40-64 Years 34% 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. 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) Urinary Bladder 2% Ovary Lung & 3% Bronchus 3% Cervix 4% Melanom a 6% Hem atologic 6% Other 15% Breast 42% Colorectal 9% Corpus & Uterus NOS 10% 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. 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) Larynx 2% Oropharyngeal 3% Lung and Bronchus 4% Melanoma 7% Urinary Bladder 8% Hematologic 9% Other 15% Prostate 41% Colorectal 11% 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. Institute of Medicine  17 member committee developed to     address the care and quality of life of cancer survivors Prevention Surveillance Intervention Coordination 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 survivor’s health care is forever altered. 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. 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 patient’s diagnosis, treatment and needed follow-up. The Care Plan: Issues Level of detail of summary Level of detail of guidelines To whom is it directed Will patients find it useful Will oncologists, primary care doctors find it useful 6) Does it need updating? 7) Payment 1) 2) 3) 4) 5) 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. 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   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 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 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 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 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 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. 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 Unique Challenges to Cancer Survivors  Psychosocial Support  Employment  Financial Costs of Cancer  Social 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 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 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. 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 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 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. 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) 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) 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) 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 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 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 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 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 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 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 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 Social Concerns for the Older Adult  Retirement-before or after 65  Fixed incomes and Medicare  Erosion of retiree benefits  Remote from social support  Transportation 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 Quality of Non-Breast Cancer Health Maintenance Among Elderly Breast Cancer Survivors Neither PCP nor Oncologist (n=221) PCP Only (n=2,466) Oncologist only (n=203) Both PCP And Oncologist (n=3,075) Mammography Influenza vaccine Lipid testing Weeks, et al, JCO, 2003 30.3 28.1 60.7 62.6 80.3 59.1 86.7 70.1 20.4 42.1 34.5 54.9 Relationship Between Type of Physician Follow-up and Receipt of Preventive Services for Survivors Neither PCP nor Oncologist (n=221) PCP Only (n=2,466) Oncologist Only (n=203) Both PCP And Oncologist (n=3,075) Cervical exam Colon exam Bone densitometry 3.2 1.4 24.7 12.6 12.3 10.8 38.8 21.2 1.4 7.0 8.9(NS) 9.9 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 Family History  Needs to be updated periodically  Three generation family history pedigree  Assess self risk and other family member’s risk  Referral to genetic counselor / prevention clinic 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 Cardinal Bernardin Cancer Center Cancer Survivorship Clinic DIAGNOSIS TREATMENT EARLY FOLLOW UP SURVIVORSHIP POST-TX FOLLOW UP LONG TERM POST-TX FOLLOW UP • 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 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. 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 LOYOLA UNIVERSITY MEDICAL CENTER CARDINAL BERNARDIN CANCER CENTER CANCER SURVIVORSHIP CLINIC Primary Oncologist: *** Primary Care Physician: *** Other Treating Physician: *** DIAGNOSIS: @DIAG@ STAGE: T *** N *** M ***, Grade *** Primary tumor size {NUMBERS:13490} cm; number or lymph nodes {NUMBERS:13490} TREATMENT HISTORY: *** Surgery: *** Surgery Date: *** CHEMOTHERAPY: DRUG DOSE CYCLE# DATE RADIATION THERAPY: DOSE AREAS DATES INITIAL COMPLETION RECOMMENDED SURVEILLANCE: 1. *** 2. *** 3. *** RECOMMENDED MEDICINES: 1. *** 2. *** 3. *** REFERRALS: *** FOLLOW UP: {MONTHS/YEAR:13315} 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) Expanded Patient Services  Maximize use of current programs and services  Support groups and psychoeducational programs  Nutrition counseling  Smoking cessation  Physical rehabilitation 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 Extracurricular Activities  Outreach Programs  Core lecture series  Patient  Care givers/family  Late and Long term Effects of Cancer Treatment  Nutrition/Weight  Psychosocial challenges of Survivorship     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 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. 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.