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Lost in Transition: Adolescent and Young Adult Survivors of Childhood Cancer
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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
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
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
Transition
Point A Transition
Point B
Transition
Point A Transition
Point B
Transition
Transition
Transition
Transition
Transition
Transition
Transition
Transition
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
Background
Schidlow DV et al. Med Clin North Am. 1990 Sep;74(5) :1113-20.
Background
Consensus Statement on Health Care Transitions
2002; 110: 1301.
Background
Background
2011 Jul;128(1):182-200
Karim Sadak, MD
Transition Algorithm
Subspecialty Transition
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
AYA…is that talking about me?!?
Age of Majority
MN Statute 645.451 Subdivision 3
Adult ≥ 18 years of age
Age of Reason
The age at which a child is considered capable of acting responsibly
Age of Reason
Neurobiology research shows that executive function, impulsivity, and decision making
continue to mature until mid-twenties
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.
Rest of the World
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
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
The Transition Process
Basics Late-Effects
Accessing Care
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
Childhood Cancer Survivors
Kadan-Lottick NS. JAMA 2002 Apr 10;287(14):1832-9.
19%
accuratelyreported their diagnosis
Diagnosis
72%
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
Childhood Cancer Survivors
Kadan-Lottick NS. JAMA 2002 Apr 10;287(14):1832-9.
94% 93% 89%
Childhood Cancer Survivors
Kadan-Lottick NS. JAMA 2002 Apr 10;287(14):1832-9.
52%30%
Accuracy of Anthracycline Exposure Reporting
Childhood Cancer Survivors
Kadan-Lottick NS. JAMA 2002 Apr 10;287(14):1832-9.
42%
70% of survivors recalled XRT site
Site of Radiation
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
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
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%
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
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
Patient Protection and Affordable Care Act
www.healthcare.gov/news/factsheets/2011/08/young-adults.html
Insurance & EmploymentOver the age of 26 years, then what….
Employment becomes critical for insurance purposes
Employment in Childhood Cancer Survivors
• Higher risk for unemployment
• Especially survivors with physical late-effects• Gender • Education
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”
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/
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%
Childhood Cancer Survivorship Care Transition
Cancer Survivor Program
http://www.umphysicians.org/Clinics/long-term-follow-up-clinic/index.htm
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