Long-Term Follow-Up for Childhood Cancer Survivors (Aziza Shad, M.D.)
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Transcript of Long-Term Follow-Up for Childhood Cancer Survivors (Aziza Shad, M.D.)
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CHILDHOOD CANCER SURVIVORSSTATISTICS
Today, almost 80% of all children and adolescentsdiagnosed with cancer are surviving more than 5years, majority are cured
Currently, there are more than 300,000 childhoodcancer survivors in the USA
1:1000 adults younger than the age of 45 years,and 1:570 adults between the ages of 20 34 yearsis a cancer survivor
There are almost 100,000 childhood cancersurvivors in college today
AND THE NUMBERS ARE GROWING!
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FOLLOW-UP CARE FOR CHILDHOODCANCER SURVIVORS
Why should we provide follow-up care forchildhood cancer survivors as they becomeadults and for years beyond that?
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TREATMENT IS NOT WITHOUT COST!
Numerous studies have confirmed that childhoodcancer survivors are vulnerable to complicationsrelated to their cancer or its treatment Chemotherapy
Radiation therapy
surgery
Some complications can be identified early duringtreatment and follow-up
Majority of late effects of treatment becomeapparent many years after treatment is finished
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SOME SOBERING FACTS
Children treated in the 1970s 1990s 75% will develop a chronic disease by 40 years of
age
Over 40% will develop a serious health problem
The absolute excess risk of prematuredeath from Second malignancy
Cardiovascular disease
Pulmonary disease
Significantly elevated beyond 30 years fromdiagnosis
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EXAMPLES OF LATE EFFECTS IN CHILDHOODCANCER SURVIVORS
Heart disease after treatment with anthracyclinechemotherapy or chest radiation
Learning disabilities in leukemia and brain tumorsurvivors treated with radiation and /orchemotherapy to the brain
Breast cancer at an early age in female survivors ofHodgkin lymphoma who received radiation to thechest in their teens
Post traumatic stress syndrome in survivors and
parents Infertility and premature menopause from radiation
to the abdomen and pelvis for sarcomas
Chronic pain and fatigue
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THE FUTURE LOOKS BETTER
Therapy for childhood cancer has evolvedover the years
Goal of treatment in 21st century
Improve cure rates Decrease the risk of long-term sequelae
Anticipated result frequency and severity of side effects
Proactive, risk-based care and healthylifestyles will further reduce the severity ofthe side effects
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CHILDHOOD CANCER SURVIVOR STUDY(CCSS)
Largest, most comprehensive, NIH funded,epidemiological research Long Term Follow-upStudy in USA
17,308 childhood cancer survivors Treated between 1970 -1986 From 26 largest pediatric oncology institutions
Less than 21 years of age at diagnosis
Survival of more than 5 years from diagnosis
Compared the health status of 10,397 adultchildhood cancer survivors to 3034 siblings
Almost 75% of survivors had at least one chronichealth condition 30 years after diagnosis
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CHILDHOOD CANCER SURVIVOR STUDY(CCSS)
Late Effects Growth and development
Linear growth, intellectual function, sexualdevelopment
Vital organ function Heart, lungs, thyroid, kidneys, liver, immune system
Fertility and reproduction
Second malignancy
Psychosocial issues Post traumatic stress syndrome
Early mortality
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LATE EFFECTS MOST SURVIVORSCOMMONLY HAVE QUESTIONS ABOUT
Neurocognitive dysfunction
Cardiovascular disease
Infertility and gonadal dysfunction
Psychosocial problems
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NEUROCOGNITIVE ISSUES
Range from mild cognitive deficits to majorlearning disabilities
Children with brain tumors and ALL mostsusceptible
Difficulties also seen following SCT orradiation for tumors of the head and neck
Disabilities necessitating special educationhave been reported in 8 - 50% children difficulty in reading, spelling, arithmetic
impairment of attention and memory
processing speed
visual perceptual motor skills
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DEVELOPMENT - DEPENDANT LATE EFFECTS
Cranial irradiation timing - < 36 months of age
dose - > 36 Gy
this is highest risk group for serious cognitiveimpairment and neurological sequelae
Chemotherapy alone Methotrexate, high dose Ara-C, corticosteroids
Worsening academic performance is related to a
reduced rate of skill acquisition
Become more evident as children transition tomiddle and high school
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RADIATION EFFECT ON GROWTH
Early onset of puberty
Direct inhibition of vertebral growth following spinal radiation > 35 Gy
ultimate short stature
Growth retardation after chemotherapy isusually temporary
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CARDIOVASCULAR DISEASE
The developing cardiovascular system isvery vulnerable to cancer therapy
Exposure to anthracyclines Asymptomatic cardio toxicity
Cardiomyopathy, LV dysfunction, CHF
Mantle radiotherapy
Coronary and carotid artery disease
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ASYMPTOMATIC CARDIOTOXICITY (A-CHF)
Cohort study of 831 survivors treated withanthracyclines Estimated risk of (A-CHF) 20 yrs after the 1st
dose 9.8% for subjects receiving > 300mg/m2
Other risk factors Female sex
Younger age at treatment Higher cumulative doses of anthracyclines
Radiotherapy involving the heart region
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FERTILITY AND GONADAL DYSFUNCTION
Males Sterility can occur
following a dose of 10 g of cyclophosphamide
low doses of radiotherapy (200 - 300 cGy)
Females Ovaries are relatively resistant to chemotherapy-
induced damage
They are sensitive to radiation pubertal delay and premature ovarian failure
osteoporosis and early coronary artery disease
age at treatment is significant
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PREMATURE OVARIAN FAILURE
Risk factors for Premature Ovarian Failure age between 13 and 19 years at time of treatment
high dose chemotherapy including alkylating agents
whole abdominal radiation (22 - 30 Gy) for Hodgkins
disease, Wilms tumor or other solid tumors cranial irradiation
highest risk factor - total body irradiation inpreparation for BMT
100% patients over 10 years of age and 50% under theage of 10 will develop premature ovarian failure
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PSYCHOLOGICAL ISSUES
Childhood cancer survivors are more likely topresent with Mental health disorders
Chronic pain Fatigue
One fifth suffer from PTSD
Can emerge months to years after treatment May be associated with anxiety and other
psychological stress
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HISTORICAL PERSPECTIVE ON LONGTERM FOLLOW-UP CLINICS
1960 to mid 1980s, little information wasavailable on long term health of cancersurvivors
Most survivors treated during that periodwere discharged from care 5 -10 years offtherapy
Were never seen back in a childrenshospital or cancer center
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HISTORICAL PERSPECTIVE
Early 1980s very few long term follow-up (LTFU)programs for survivors Primarily to document and report any late effects of
treatment
With increase in awareness of late effects,
institutions started developing LTFU programs USA: most COG institutions have a LTFU program
for children Hardly any Transition Programs are available
Ontario, Canada: the only province with a
coordinated system of care for both, pediatric andadult survivors of childhood cancer
Netherlands: all pediatric oncology centers have aLTFU program for children
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DELIVERY OF SURVIVOR HEALTH CARE
Long Term Follow-up Programs Backbone of care for pediatric cancer survivors
Based at Childrens hospitals or Cancer Centers
Team: MD, NP, SW, Psychologist
Multidisciplinary Network
Core Components
Cancer summary and plan COG Long Term Follow-up Guidelines
Delivery of risk based care
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TRANSITION PROGRAMS
As childhood cancer survivors become
young adults, they need to be transitionedfrom the sheltered environment ofpediatrics to the independent environmentof adult medicine
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MODELS OF CARE
Specialized Long Term Follow-up Clinics Multi-disciplinary teams provide life long follow-
up at pediatric oncology treatment centers
Relationship established with primary health care
provider in community Annual comprehensive follow-up at pediatric
facility
Routine health care needs with primary health
care provider Complete treatment summary provided to
primary MD and close communicationmaintained between the two services
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TRANSITION FOLLOW-UP PROGRAMS
Formalized transition programs for adultsurvivors of childhood cancer
Childrens Hospital of Philadelphia and Live WellAfter Cancer program at University of PA
Childrens Memorial Hospital, Chicago
transitions to STAR (Survivors Taking Action andResponsibility) Program at NorthwesternUniversity
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OTHER MODELS OF CARE
Adult Oncology Directed Care Monitoring for disease recurrence is easy
Unfamiliar with late effects of multi-agent chemotherapyand radiation given to children
Community Based Care Care provided by primary care provider internist, family
practitioner
Maintains ongoing communication with pediatric oncologytreatment team
Limited access to sub-specialists
Survivor may eventually lose contact with oncology team
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RISK-STRATIFIED SHARED CARE MODEL
Integration of primary care physicians (PCP)into this model
Survivors are stratified into 3 groups basedupon their risk of late effects:
Low risk group: Surgery only, no radiation, minimal
chemotherapy
Following 1st LTFU clinic visit, patient istransitioned to PCP with summary of treatment
LTFU clinic staff communicates with PMD every3-5 years to get updates
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RISK-STRATIFIED SHARED CARE MODEL
Moderate risk group: No radiation, low or moderate dose
chemotherapy with alkylating agents,anthracycline, bleomycin or epipodophyllotoxin
Annual follow-up in LTFU clinic for 5 10 years Education on healthy lifestyles provided
Monitoring for late effects and recurrence
Transition to PMD with updated treatment
summary and surveillance plan LTFU clinic staff communicates with PMD every
year to get updates
LTFU program also serves as a consult service
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RISK-STRATIFIED SHARED CARE MODEL
High risk group:
Any radiation, high dose chemotherapy withalkylating agents, anthracycline, bleomycin
or epipodophyllotoxin, SCT Followed only at LTFU program
Continued communication with PCP
regarding new health problems PCP remains involved for non-cancer care
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CANCER SURVIVORSHIP PROGRAMLOMBARDI CANCER CENTER
Established 5 years ago
1 oncologist
Off-therapy summaries
Expanded to fully staffed program 2 yearsago
Grant from Childrens Cancer Foundation andHyundai Motor Cars
Support from patient families
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CANCER SURVIVORSHIP PROGRAMLOMBARDI CANCER CENTER
Team
Oncologist
Nurse practitioner
Social worker Art Therapist
Neuropsychologist
Psychologist
Multidisciplinary sub-specialist team
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CANCER SURVIVORSHIP PROGRAMLOMBARDI CANCER CENTER
Achievements Health Behaviors Study
CD-ROM on Late Effects
3 conferences on Late Effects
2002 Local meeting 2006 Regional conference Rise to Action
2008 Regional conference Rise to Action II
Bridges Art Therapy Project
Manual for Childhood cancer survivors The Next Step.Crossing the Bridge to Survivorship
Education for primary care givers
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SUMMARY
Late effects of therapy are frequent andserious
Proactive and anticipatory risk-based care
can reduce the frequency and severity oftreatment based morbidity
The primary care physician should be anintegral partner in risk-based care of
survivors