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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 • • •
- 4. Transition Point A Transition Point B
- 5. Transition Point A Transition Point B
- 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
- 11. Background Schidlow DV et al. Med Clin North Am. 1990 Sep;74(5) :1113-20.
- 12. Background 2002; 110: 1301. Consensus Statement on Health Care Transitions
- 13. Background
- 14. Background 2011 Jul;128(1):182-200
- 15. Transition Algorithm Karim Sadak, MD
- 17. Objectives • • Describe who is considered an adolescent and young adult (AYA) survivor of childhood cancer • •
- 18. AYA…is that talking about me?!?
- 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.
- 23. Rest of the World
- 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
- 25. Objectives • • • Demonstrate how to use the transition of care to empower the AYA survivor of childhood cancer •
- 26. The Transition Process Late- Accessing Basics Effects Care
- 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
- 30. Childhood Cancer Survivors 94% 93% 89% Kadan-Lottick NS. JAMA 2002 Apr 10;287(14):1832-9.
- 31. Childhood Cancer Survivors Accuracy of Anthracycline Exposure Reporting 30% 52% Kadan-Lottick NS. JAMA 2002 Apr 10;287(14):1832-9.
- 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
- 34. Objectives • • • • Introduce the importance of employment with health insurance benefits for AYA survivors of childhood cancer
- 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.
- 44. Childhood Cancer Survivorship Care Transition
- 45. Cancer Survivor Program http://www.umphysicians.org/Clinics/long- term-follow-up-clinic/index.htm
Notas do Editor
- 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