1. The Young Adult Cured of Cancer in Childhood Melissa M. Hudson, M.D. After Completion of Therapy Clinic St. Jude Children’s Research Hospital

2. Transition of Care After Pediatric Cancer Cancer Diagnosis Long-Term Survival Health & Resilience Primary Prevention Risk-adapted therapy Favorable: Reduce therapy Unfavorable: Intensify therapy Secondary Prevention Health education Cancer screening Therapeutic interventions Pediatric Health Care Adult Health Care

3. Optimal Care After Cancer  Longitudinal care from diagnosis to death.  Comprehensive care including preventive measures to reduce morbidity and mortality.  Coordination of care by provider knowledgeable about cancer-related risks working with multidisciplinary team.  Health care sensitive to cultural and spiritual values and issues of the cancer experience

4. Challenges to Providing Care  Evolving therapies and late effects.  Long latency to evaluate health outcomes.  Multiple factors contributing to cancer-related health risks.  Unknown effects of aging on many treatment sequelae.  Lack of consensus regarding screening guidelines and risk reduction methods.

5. Challenges to Providing Care  Transitioning from oncology to primary care.  Transitioning from pediatric to adult care.  Lack of knowledge by primary care providers:  Cancer-related health risks  Risk-reduction methods.  Lack of support from healthcare system for specialized survivor care, e.g., long-term follow-up programs.

6. Goals of After Therapy Care  To maintain cancer-free survival.  To detect cancer-related complications at early stages.  To prevent, reduce, or correct cancer-related complications.  To optimize health and resilience.

7. Prevention of Morbidity  Identify factors predisposing to cancer- related morbidity.  Identify factors modifying cancer-related health risks.  Provide interventions to prevent, reduce, correct cancer-related morbidity.

8. Factors Contributing to Morbidity Cancer-Related Morbidity Host Factors Age Gender Race Premorbid conditions Treatment Factors Surgery Radiation Chemotherapy Health Behaviors Tobacco Diet Alcohol Exercise Sun Genetic BRCA, ATM, p53 polymorphisms Histology Site Biology Response Tumor Factors Aging ????? Treatment Events Relapse Vital Organ Toxicity

9. Risk-Based Care  Screening/prevention plan that integrates cancer experience with health care needs.  Considers risk for morbidity related to:  Host: sex, race, age at diagnosis & follow-up  Cancer: location, treatment modalities  Genetic/familial predispositions  Lifestyle habits  Co-morbid health conditions

10. Case Study: Adult Survivor  25 year-old female patient diagnosed with Hodgkin’s disease at age 15 years  Combined modality treatment with COPP/ABV and mantle (21 Gy) radiation  Family history: Mother - breast cancer at 42 years; Father - angioplasty at 44 years  Social history: cigarette smoking, tanning bed use; drinks alcohol socially; noncompliant with breast cancer surveillance

11. Review Risk Factors  Host: female, pubertal status during treatment, 10 years after therapy  Treatment: alkylating agents, anthracycline, bleomycin, chest radiation  Familial: pre-menopausal breast cancer, early-onset coronary artery disease  Lifestyle: tobacco, tanning, alcohol

12. Assess Late Effects Risks  Dental: xerostomia, accelerated dental decay  Thyroid: hypothyroidism, thyroid nodules  Cardiac: cardiomyopathy, atherosclerosis  Pulmonary: restrictive lung disease  Gonadal: infertility, early menopause  Second malignancy, especially breast cancer

13. Counsel to Promote Health  Inform of potential health risks.  Address increased vulnerability  Provide personalized risk information  Establish priority health goals.  Discuss benefits of protective behaviors.  Discuss barriers to/personal costs  Provide follow-up counseling.

14. Educate About Risks  Cancer diagnosis and treatment  Cancer-related health risks  Behavioral factors affecting risk  Risk reduction strategies

15. Address Increased Vulnerability  Sociodemographic factors  Cancer treatment modalities  Family history/genetic predisposition  Maladaptive behaviors  Unknown impact of aging

16. Personalize Health Education  Predisposing cancer treatments: Radiation, Adriamycin, bleomycin, alkylators  Predisposing family history First-degree relative with breast cancer First-degree relative with early onset CAD  Maladaptive lifestyles Smoking, tanning, alcohol use Address also: diet, weight control, exercise  Need for early breast cancer surveillance.

17. Encourage Health Goals  Stop smoking.  Use sun protection measures.  Eat a healthy diet.  Limit alcohol intake.  Adopt a physically active lifestyle.  Maintain a healthful weight.  Pursue early breast cancer screening.

18. Discuss Benefits Smoking cessation  Reduce risk of heart and lung disease.  Reduce risk of tobacco-related cancers. Sun protection  Reduce risk of premature skin aging.  Reduce risk of skin cancer.

19. Discuss Benefits Healthy diet and physical activity  Reduce risk of cardiovascular disease.  Reduce risk of breast, colon, uterine and other cancers. Limit alcohol consumption  Reduce risk of liver disease.  Reduce risk of mouth, pharynx, larynx, esophagus, liver, and breast cancer.

20. Discuss Benefits Regular screening examinations  Early detection of health problems  Prevention of health problems  Early intervention to reduce morbidity

21. Address Barriers  Appreciate that barriers may be personal, familial, social, economic in etiology.  Fear/discomfort with breast screening  Insurance denial of clinician/imaging screening  Provide information to facilitate behavioral change.  Patient education about breast screening  Clinician communication with primary care providers or insurance company

22. Health Behavior Counseling  Discuss alternative behaviors and choices.  Anticipate reactions/responses by family and peers.  Challenge survivor (and family) to commit to healthier lifestyle.  Provide follow-up counseling.

23. Barriers to Risk-Based Care  Clinic environment: work flow impeded with time-consuming counseling  Clinical staff: time constraints with patient care and lack of knowledge about cancer- related health risks  Survivors/Family: lack of interest or resistance to counseling efforts

24. Requisites for Success  Dedicated time/day for survivor follow-up  Dedicated staff with interest in late effects  Specialty or advance practice nurse most commonly utilized  Multidisciplinary participation  Oncologists- Nurse  Psychologist- Social worker  Allied and subspecialty care providers

25. For Comprehensive Risk- Based Screening Recommendations and Patient Education Materials For complete recommendations: Children’s Oncology Group Long-Term Follow-Up Screening Guidelines http://www.survivorshipguidelines.org

26.  Know about cancer/cancer-related health risks.  Keep a record of medical events.  Share record with all providers.  Pursue routine medical evaluations.  Review lifestyle for methods of risk reduction.  Keep informed about late effects research. Advice to Survivors

27.  Serious late effects occur in a minority.  Late effects are possible only when cancer therapy is successful.  Research can reduce and prevent late effects.  Knowledge of factors predisposing to late effects can reduce their incidence. Taming Anxiety About Late Effects