Karim Sadak, M.D., M.PH., MSE

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





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





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





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%


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



94% 93% 89%



52%30%

Accuracy of Anthracycline Exposure Reporting



42%

70% of survivors recalled XRT site

Site of Radiation


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





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


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


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


• Survivorship specialist can help

• Job accommodations• Academic achievement• Gaps in resumes

• Americans with Disabilities Act

• Requires employers to provide “reasonable accommodations”


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/


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

Health & Medicine

Karim Sadak, M.D., M.PH., MSE