Long-Term Follow-Up for Childhood Cancer Survivors (Aziza Shad, M.D.)

8/7/2019 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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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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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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Team

Oncologist

Nurse practitioner

Social worker Art Therapist

Neuropsychologist

Psychologist

Multidisciplinary sub-specialist team


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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

Long-Term Follow-Up for Childhood Cancer Survivors (Aziza Shad, M.D.)

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