karim sadak, m.d., m.ph., mse
DESCRIPTION
Lost in Transition: Adolescent and Young Adult Survivors of Childhood CancerTRANSCRIPT
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Karim Thomas Sadak, MD,MPH, MSE
Director, Cancer Survivorship Division of Pediatric Hematology/Oncology
Lost in Transition: Adolescent and Young Adult
Survivors of Childhood Cancer
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Objectives
• Introduce the issue of transition from pediatric care to adult care with some historical background
• Describe who is considered an adolescent and young adult (AYA) survivor of childhood cancer
• Demonstrate how to use the transition of care to empower the AYA survivor of childhood cancer
• Introduce the importance of employment with health insurance benefits for AYA survivors of childhood cancer
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Objectives
• Introduce the issue of transition from pediatric care to adult care with some historical background
• Describe who is considered an adolescent and young adult (AYA) survivor of childhood cancer
• Demonstrate how to use the transition of care to empower the AYA survivor of childhood cancer
• Introduce the importance of employment with health insurance benefits for AYA survivors of childhood cancer
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Transition
Point A Transition
Point B
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Transition
Point A Transition
Point B
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Transition
Transition
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Transition
Transition
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Transition
Transition
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Transition
Transition
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Transitions in Healthcare
Madeline Will, MASecretary of Education
C. Everett Koop, MD,Surgeon General
1984
National Invitational Conference for Older
Adolescents with Chronic or Disabling
Conditions
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Background
Schidlow DV et al. Med Clin North Am. 1990 Sep;74(5) :1113-20.
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Background
Consensus Statement on Health Care Transitions
2002; 110: 1301.
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Background
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Background
2011 Jul;128(1):182-200
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Karim Sadak, MD
Transition Algorithm
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Subspecialty Transition
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Objectives
• Introduce the issue of transition from pediatric care to adult care with some historical background
• Describe who is considered an adolescent and young adult (AYA) survivor of childhood cancer
• Demonstrate how to use the transition of care to empower the AYA survivor of childhood cancer
• Introduce the importance of employment with health insurance benefits for AYA survivors of childhood cancer
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AYA…is that talking about me?!?
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Age of Majority
MN Statute 645.451 Subdivision 3
Adult ≥ 18 years of age
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Age of Reason
The age at which a child is considered capable of acting responsibly
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Age of Reason
Neurobiology research shows that executive function, impulsivity, and decision making
continue to mature until mid-twenties
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Cancer Research
International Classification of Childhood Cancer Research
Groups: 0-14 years & 15-19 years
AYA research: 15-39 yearsBarr RD, Holowaty EJ, Birch JM. Classification Scheme for tumors diagnosed in adolescents and young adults. Cancer 2006;106(7):1425-30.
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Rest of the World
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AYA…is that talking about me?!?
Regardless of the age, we all agree that…
AYA Childhood Cancer Survivors require:life-long carefocusing on late-effects of their cancer treatment(s)by a health care team knowledgeable about late-effects
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Objectives
• Introduce the issue of transition from pediatric care to adult care with some historical background
• Describe who is considered an adolescent and young adult (AYA) survivor of childhood cancer
• Demonstrate how to use the transition of care to empower the AYA survivor of childhood cancer
• Introduce the importance of employment with health insurance benefits for AYA survivors of childhood cancer
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The Transition Process
Basics Late-Effects
Accessing Care
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Transitions in Survivorship Care
Basics Late-Effects
Accessing Care
• Diagnosis• Name of your primary care provider
doctor and/or survivorship provider• Current medication(s)
• Why?• Dose• Where and how to refill
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Childhood Cancer Survivors
Kadan-Lottick NS. JAMA 2002 Apr 10;287(14):1832-9.
19%
accuratelyreported their diagnosis
Diagnosis
72%
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Transitions in Survivorship Care
Basics Late-Effects
Accessing Care
• Treatment history• Current health issues / late-effects• Possible future late-effects
SCP – Survivor Care Plan CSP – Cancer Survivorship Plan
A variety of formats exist for the SCP
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Childhood Cancer Survivors
Kadan-Lottick NS. JAMA 2002 Apr 10;287(14):1832-9.
94% 93% 89%
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Childhood Cancer Survivors
Kadan-Lottick NS. JAMA 2002 Apr 10;287(14):1832-9.
52%30%
Accuracy of Anthracycline Exposure Reporting
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Childhood Cancer Survivors
Kadan-Lottick NS. JAMA 2002 Apr 10;287(14):1832-9.
42%
70% of survivors recalled XRT site
Site of Radiation
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Transitions in Survivorship Care
Basics Late-Effects
Accessing Care
• Logistics• What number to call?• Where to go?
• Insurance• In-network vs out-of-network• Co-pay• Out of pocket expense
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Objectives
• Introduce the issue of transition from pediatric care to adult care with some historical background
• Describe who is considered an adolescent and young adult (AYA) survivor of childhood cancer
• Demonstrate how to use the transition of care to empower the AYA survivor of childhood cancer
• Introduce the importance of employment with health insurance benefits for AYA survivors of childhood cancer
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Insurance for AYA Survivor of Childhood Cancer
• Patient Reform and Affordable Care Act (2010)• Upheld in the US Supreme Court (2012)
• What age group has the highest rates of being uninsured?
• 19-29 year olds
• What percentage of all uninsured Americans are AYA?
• ~ 33%
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Patient Protection and Affordable Care Act
Mandates that…
All children, including childhood cancer survivors, be allowed to stay on their parent’s health care plan up to age 26
• Do not need to live at home or be claimed as a dependent• Can be employed• Can be married
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Patient Protection and Affordable Care Act
Mandates that…
All children younger than 19 years of age cannot be denied benefits or coverage for a pre-existing condition, such as childhood cancer
• Starting in January 2014, this will apply for all ages
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Patient Protection and Affordable Care Act
www.healthcare.gov/news/factsheets/2011/08/young-adults.html
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Insurance & EmploymentOver the age of 26 years, then what….
Employment becomes critical for insurance purposes
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Employment in Childhood Cancer Survivors
• Higher risk for unemployment
• Especially survivors with physical late-effects• Gender • Education
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Employment in Childhood Cancer Survivors
• Survivorship specialist can help
• Job accommodations• Academic achievement• Gaps in resumes
• Americans with Disabilities Act
• Requires employers to provide “reasonable accommodations”
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Employment in Childhood Cancer Survivors
www.cancerandcareers.org
http://www.livestrong.org/Get-Help/Learn-About-Cancer/Cancer-Support-Topics/Practical-Effects-of-Cancer
http://www.canceradvocacy.org/resources/employment-rights/
www.disabilityrightslegalcenter.org/
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Childhood Cancer Survivors
General Medical
Care
Physical Exam
Cancer-related
Cancer Center
Oeffinger K et al. Ann Fam Med. 2004 Jan-Feb;2(1):61-70.
42%
19%
71%
87%
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Childhood Cancer Survivorship Care Transition
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Cancer Survivor Program
http://www.umphysicians.org/Clinics/long-term-follow-up-clinic/index.htm