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Nancy Keene
Mother, Writer, Advocate
Wendy Hobbie, MSN, CRNP, FAAN
Associate Director, Cancer Survivorship Program
The Children’s Hospital of Philadelphia
Health Maintenance for Survivors:
A Conversation with a Parent
and a Practitioner
October 2012
Today’s Discussion Topics
• A little history
• Late effects
• Managing late effects
• Maintaining health
• Finding helpful resources
• Questions and answers
2
A Little History
Landmarks In Pediatric Oncology
• 1970s
• Recognition that cure was possible
• Proliferation of randomized clinical trials
• Effective multi-modality protocols
• 1980s
• Tailoring therapy to risk factors
• Defining late effects
• Reducing radiation dose
Slide reproduced with permission from Anna Meadows, M.D., 2003
4
Landmarks In Pediatric Oncology
• 1990s
• Substituting effective drugs for radiation
• Understanding the relationship of dose to late effects
• Initiating efforts to track and educate survivors
• 2000s
• Surveillance for late effects based on risk
• Interventions to reduce late effects
• Transition to adult health care
Slide reproduced with permission from Anna Meadows, M.D., 2003
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Transitions
• Time of diagnosis
• Treatment
• Completion of treatment
• Early survivorship
• Long-term survivorship
• Transition to adult healthcare system
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Late Effects
Causes of Late Effects
• Chemotherapy
• Radiation
• Surgery
• Stem cell transplantation
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Clinically Obvious Late Effects
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Clinically Subtle Late Effects
Effects that are apparent only to the trained observer.
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Subclinical Late Effects
Effects that are detectable only by laboratory screening or radiographic
imaging techniques.
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Some Late Effects Have Changed Over Time
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Late Complications of Childhood Cancer Therapy
• Growth and development
• Linear growth
• Intellectual function
• Sexual maturation
• Reproduction
• Fertility
• Health of offspring
• Second cancers
• Organ function
•
•
•
•
Cardiac
Pulmonary
Renal
Gastrointestinal
• Benign
• Malignant
• Psychosocial adjustment
• PTSD
• Overall adjustment
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Cognitive Effects of Therapy
• Cognitive changes are among the most challenging to manage,
especially in young adulthood
• Impact on education
• Impact on transition to adulthood
• Impact on quality of life
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Neurocognitive Late Effects
• Learning disabilities
• Developmental delays
• Attention deficit disorder
• Behavioral abnormalities
• Fine motor coordination
• Leukoencephalopathy
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Endocrine Effects
• Hypothalamic pituitary axis
• Fertility
• Thyroid
• Adrenals
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Cardiac Late Effects
• Anthracyclines
• Gender
• Age
• Dose
• Radiation:
• > 25-30 Gy
• Cardiomyopathy
• Ventricular dysfunction
• Pericarditis
• Arrhythmias
• Pericardial damage
• Valve damage
• Coronary artery disease
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Psychosocial Effects
• Fear of recurrence
• Sense of physical damage
• Anxiety
• Post-Traumatic Stress Disorder
• School, employment, finances
• Interpersonal issues
• Social well-being/re-entry
• Intimacy issues
• Sexual functioning
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Why is Cancer Treatment Traumatic?
• Repeated invasive, distressing procedures
• Life threat
• Feelings of helplessness
• Disruption to individuals and families
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Why is Survivorship Traumatic?
• Continued health vigilance and tests can trigger distress
• Emergence of late effects
• Knowledge of future medical vulnerabilities
• Treatment-related losses (e.g., cognitive function or fertility)
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Families Identify Positive Aspects of Surviving Cancer
• Greater appreciation for life
• Increased life satisfaction
• Renewed spirituality or religiosity
• Improved self-acceptance and self-awareness
• Strengthened relationships
• Increased ability to cope with adversity
• Present-centered awareness
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Managing Late Effects
Comprehensive Care
“Comprehensive care of the individual with cancer
demands that the same expertise, energy, empathy, and support
that were provided during the crisis of diagnosis and treatment
are provided throughout survivorship.”
Source: Harpham, W. (1998). Late effects of Cancer Therapy. In Principles and Practice of Supportive
Oncology. Philadelphia, PA: Lippincott-Raven.
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Goals for Follow-up Care
• Education
• Treatment
• Risk factors
• Surveillance
• Surveillance
• Early detection of problems
• Development of individual
risk profile
• Anticipatory guidance
• Modifiable risk factors
• Health promotion/maintenance
• Empowerment/advocacy
• Education
• Awareness
• Transitional needs
•
•
•
•
Assess readiness
Identify adult medical home
Provide information to new provider
Facilitate transfer of care
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Survivorship Team Members
• Nurse practitioners
• Medical oncologists
• Psychologists
• Research nurses
• Social workers
• Nutritionists
• Specialty care providers
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Ways to Reduce Late Effects
• Health education about exercise, diet, smoking, sun, seat belts,
texting while driving
• Reproductive counseling
• Psychosocial support
• Education about disease history
• Discussion of risks associated with treatment
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What Childhood Cancer Survivors Know
• Cancer diagnosis
• With details
• Without details
72%
19%
• Chemotherapy (yes, no)
94%
• Doxorubicin (Adriamycin)
• Daunomycin (Cerubidine)
52%
30%
• Radiation therapy (yes, no)
89%
• Site of radiation
• Therapy can lead to complications
70%
35%
Source: Kadan-Lottick. NS. Journal of the American Medical Association, 2002; 287(14): 1832-9.
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What Experts in Survivorship Know
• More than 60% of childhood cancer survivors have late effects; almost half
of those late effects are severe, life threatening, or disabling.*
• The incidence of late effects increases over time.*
• Few survivors get adequate follow-up care.**
• The need for information is high; availability of accurate information is low.
*Source: Oeffinger, KC, et al. New England Journal of Medicine, 2006; 355: 1572-82.
**Source: Institute of Medicine. 2003; Childhood Cancer Survivorship, pp. 101-105; Hobbie and Keene were invited
reviewers of this book
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Maintaining Health
Healthcare Practices of Young Adult Survivors
• In the past two years
• General medical contact
• Cancer-related visit
• Survivorship program visit
87%
42%
19%
• Risk factors for lack of health care
•
•
•
•
No insurance
Not concerned
Age over 30 years
Male gender
Source: Nathan, PC, et al. Journal of Clinical Oncology, 2009; 27(14): 2363-73.
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Provider Education to Reduce Late Effects
• Increase knowledge of late effects of cancer therapy
• Improve ability to recognize and treat subclinical late effects
• Detect second cancers early
• Screening of high-risk patients for radiation-associated cancers
• Counseling of survivors with genetic predisposition
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The Science and Art of Cancer Survivorship Care
• The Science:
• Identify known risk factors
• Establish and update criteria to evaluate survivors for physical and psychological
late effects
• The Art:
• A balanced approach to care
• Provide information to empower
• Focus on modifiable risk factors
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“Cure is Not Enough”
The greatest threat to a survivor’s well being
is lack of information.
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Finding Helpful Resources
Helpful Resources
• Childhood Cancer Survivors: A Practical Guide to Your Future, 3rd ed.
• Survivorship guidelines from the Children's Oncology Group
• Ped-Onc Resource Center
• National Children’s Cancer Society
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Childhood Cancer Survivors
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Childhood Cancer Survivors
• Updated and reviewed by experts
• Stories from 100 survivors and their parents
• Five general chapters
• One disease chapter
• Thirteen chapters on late effects by system
• Comprehensive list of resources
• Citations to the technical literature
• Tear-out cancer survivors treatment record
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Childhood Cancer Survivors
• Published by a 501c(3) nonprofit called Childhood Cancer Guides
• Website: www.childhoodcancerguides.org/survivors
• Facebook: Childhood Cancer Survivors: A Practical Guide to Your Future
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Children’s Oncology Group Guidelines
• Contain current recommendations based on treatment
• Use in partnership with healthcare provider
• Find at www.survivorshipguidelines.org
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Ped-Onc Resource Center
• Created and maintained by a mother of a long-term survivor
• Includes current events, technical articles, links to resources, links to
online support groups, and accurate information about late effects
• Provides up-to-date list of scholarships for survivors
• Lists follow-up clinics organized by state
• Find at www.ped-onc.org/survivors
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National Children’s Cancer Society
• NCCS provides financial and emotional support when children are being
treated
• Global Outreach Program partners with pharmaceutical companies to
distribute donated cancer treatment drugs and medical supplies around the
world
• Beyond the Cure program provides support during survivorship, including
scholarships
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Questions & Answers
Thank You!