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Karim Sadak, M.D., M.PH., MSE
1. Lost in Transition:
Adolescent and Young Adult
Survivors of Childhood
Cancer
Karim Thomas Sadak, MD,MPH, MSE
Director, Cancer Survivorship Division of Pediatric
Hematology/Oncology
2. 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
3. Objectives
• Introduce the issue of transition from pediatric
care to adult care with some historical
background
•
•
•
10. Transitions in Healthcare
C. Everett Koop, MD, Madeline Will, MA
Surgeon General Secretary of Education
1984
National Invitational
Conference for Older
Adolescents with
Chronic or Disabling
Conditions
19. Age of Majority
MN Statute 645.451 Subdivision 3
Adult ≥ 18 years of age
20. Age of Reason
The age at which a child is considered
capable of acting responsibly
21. Age of Reason
Neurobiology research shows that executive
function, impulsivity, and decision making
continue to mature until mid-twenties
22. Cancer Research
International Classification of Childhood
Cancer Research
Groups: 0-14 years & 15-19 years
AYA research: 15-39 years
Barr RD, Holowaty EJ, Birch JM. Classification Scheme for tumors diagnosed in adolescents and young adults. Cancer 2006;106(7):1425-30.
24. AYA…is that talking about me?!?
Regardless of the age, we all agree that…
AYA Childhood Cancer Survivors require:
life-long care
focusing on late-effects of their cancer treatment(s)
by a health care team knowledgeable about late-effects
27. Transitions in Survivorship Care
Late- Accessing
Basics
Effects Care
• Diagnosis
• Name of your primary care provider
doctor and/or survivorship provider
• Current medication(s)
• Why?
• Dose
• Where and how to refill
28. Childhood Cancer Survivors
Diagnosis
accurately
reported
their
72% diagnosis
19% Kadan-Lottick NS.
JAMA 2002 Apr
10;287(14):1832-9.
29. Transitions in Survivorship Care
Late- Accessing
Basics
Effects 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
32. Childhood Cancer Survivors
Site of Radiation
70% of
survivors
42%
recalled
XRT site Kadan-Lottick NS.
JAMA 2002 Apr
10;287(14):1832-9.
33. Transitions in Survivorship Care
Late- Accessing
Basics
Effects Care
• Logistics
• What number to call?
• Where to go?
• Insurance
• In-network vs out-of-network
• Co-pay
• Out of pocket expense
35. 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%
36. 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
37. 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
38. Patient Protection and
Affordable Care Act
www.healthcare.gov/news/factsheets/2011/08/young-adults.html
39. Insurance & Employment
Over the age of 26 years, then what….
Employment becomes critical for insurance purposes
40. Employment in Childhood
Cancer Survivors
• Higher risk for unemployment
• Especially survivors with physical late-effects
• Gender
• Education
41. 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”
42. 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/
43. Childhood Cancer Survivors
General
Medical
Care 87%
Physical
Exam
71%
Cancer-
related 42%
19%
Cancer
Center
Oeffinger K et al. Ann
Fam Med. 2004 Jan-
Feb;2(1):61-70.
movement, passage, or change from one position, state, stage, subject, concept, etc., to another.
PATIENT: dependent behavior, immaturity, severe illness, disability, psychopathology, lack of trust in caregivers, poor adherence to treatment regimes.FAMILY: excessive need for control, emotional dependency, psychopathology, over-protectiveness of the young adult, heightened perception of disease severity, and a lack of trust in caregivers.PEDIATRIC CAREGIVERS: economic concerns, programmatic concerns, emotional bonds with the patient and/or family, comfort with the status quo, perceptions of his or her own skills as a caregiver to adults, distrust of adult caregivers, and ambivalence towards the transition of care.ADULT CAREGIVERS: economic concerns, lack of understanding or familiarity of disease, heightened perception of healthcare demands, and a lack of institutional support.
This article reviews the development and evaluation of health care transition policy over the a 20 year period. This article concludes with suggestions regarding future policy development and research efforts around health care transition.Little has been written about the role of the primary care provider in facilitating transition and little is published in the medical literature about how transition occurs in primary care settings.This article outlines what steps could be taken by associations and the health policy, advocacy, and governmental communities to improve the situation.The concept of a medical home is endorsed as an effective model for implementing successful transitions for youth with complex chronic conditions. The U Special Kids program at the University of Minnesota was used for 2 case studies. Specific components of a transition plan are detailed with the recommendation that a formal assessment occur to develop an individualized transition plan. The individualized plan incorporates goals for the adolescent to gain independence and to obtain support in required areas.
As kid are surviving longer despite chronic disease, more and more subspecialties are becoming more and more invested in the issue of transition.
To assess knowledge of adult survivors of childhood cancer about their primary cancer diagnosis and associated therapies.Cross-sectional survey of 635 consecutive survivors (approximately 5% of CCSS population)
Factors associated with not reporting a general physical examination, a cancer-related visit, or a cancer center visit included:no health insurancemale sexlack of concern for future healthage 30 years or older in comparison with those 18 to 29 years