1. Survivorship: The Next Steps in Cancer Care Follow-Up Deb Schmidt RN, MSN, APNP

2. 1 in 285 children will be diagnosed with cancer prior to the age of 20 years 1 in 530 young adults between the ages of 20-39 years will be a pediatric cancer survivor Therefore it is likely that most pediatric and primary care practices will be involved in the diagnosis, treatment and follow-up care of our survivors. It is estimated that:

3. Incidence of Survival 1960 –28% 5-years 1998 –> 75% 5-years 2006 –> 80% 5-years

4. Overall 5-year Survival Rate Leukemia Acute lymphocytic 90% Acute myeloid 63% Lymphomas Hodgkin lymphoma 97% Non-Hodgkin lymphoma 84% Bone and joint 73% Brain75% Neuroblastoma 76% Soft tissue 76% Wilms tumor 89% Source: Surveillance, Epidemiology, and End Results (SEER) Program (www.seer.cancer.gov)2010www.seer.cancer.gov

5. Why discuss late effects??? Treatment modalities have positive impact on disease but what are the negative long-term consequences??? Late effects can be caused by the disease process, treatment or a combination of both. As health care professionals we have a responsibility to these patients, families and caregivers to educate and provide services for their late term sequelae.

6. Factors Influencing Late Effects 1)Tumor-related Factors 2)Treatment-related Factors 3)Host-related Factors

7. “Cure is not enough” We all have the same goal….. Cure cancer while maximizing the health of the survivor.

8. Factors influencing late effects: Clinical history and course Initial Diagnosis Prolonged Presentation of Symptoms (Posterior fossa syndrome/cognitive functioning) Type and Intensity of Treatment Age and Development Stage at the Time of Diagnosis and Treatment Multiple Blood Transfusions (risk of iron overload)

9. Gender Age at diagnosis Time from diagnosis/therapy Developmental status Genetic predisposition Inherent tissue sensitivities and capacity for normal tissue repair Function of organs not affected by cancer treatment Premorbid health state Socioeconomic status Health habits Host-related Factors

10. Tumor location. Direct tissue effects. Tumor-induced organ dysfunction. Mechanical effects. Tumor-related Factors

11. Radiation Therapy total dose fraction size location type Chemotherapy type dose-intensity/cumulative dose schedule. Surgery technique site Treatment-related Factors Use of Combined Modality Therapy Blood Product Transfusion Hematopoietic Cell Transplantation

12. The Challenge At time of diagnosis/consent, patients and families are more concerned with immediate life and death issues than late effects. “When that happens to me there will be new/better treatment available.” “Cancer is in my past. I want to go on with my life like everyone else.”

13. What are the late effects? 1. Physical 2. Psychological 3. Cognitive 4. Economic 5. Emotional/Social –school –employment/insurability –relationships

14. Many Survivors of Childhood Cancer Have Chronic Illnesses By Jane StoeverJane Stoever 10/24/2006 Survivors of childhood cancers confront more than their share of chronic diseases, according to the abstract for "Chronic Health Conditions in Adult Survivors of Childhood Cancer," a study reported in the Oct. 12 issue of The New England Journal of Medicine.abstract Just how heavy a burden of illness do survivors of childhood cancer bear? Among the more than 10,000 childhood cancer survivors who completed the study, nearly two-thirds reported having at least one chronic condition, according to the study's authors. That's compared with slightly more than one-third of the 3,000-plus siblings serving as controls for the study who said they had at least one such condition. Among 10,397 survivors, 62.3 percent reported having at least one chronic condition, according to Oeffinger and his co-investigators. By comparison, among 3,034 siblings, 36.8 percent reported they had at least one chronic health condition. "By the time the survivors are about 30 years out from their cancer diagnosis, almost three-fourths report some type of chronic health condition," Oeffinger said. In addition, the survivors were "eight times as likely to have a serious, life-threatening or disabling condition, in contrast to their siblings," he said. The vast majority of pediatric cancer survivors are not receiving follow-up care "with an eye toward the risks that they have," Oeffinger said in the ABC interview. "It's very important that if they're being followed … by their primary care physician in the community, or by a specialist such as a cardiologist, that it's done in consultation or at least in communication" with someone at a cancer center who can interpret the risks from the survivors' cancer treatments.

15. Late effects can range from mild to severe Any organ system can be involved Secondary malignant neoplasms can occur Quality of life is affected Academic achievement may be affected Job discrimination

16. Late Effects of Childhood Cancer Growth and Development Linear growth Skeletal maturation Intellectual function Emotional/social maturation Sexual development Fertility and Reproduction Fertility Health of Offspring Vital Organ Function Cardiac Pulmonary Renal Endocrine Gastrointestinal Vision/Hearing Second Neoplasms Benign Malignant

17. Late Effects Spectrum Life Altering Life Threatening Infertility Neurocognitive Deficits Low Grade SMN’s Hearing/Vision Loss Amputation/ Chronic Pain Short Stature Obesity Immune Deficiency Endocrinopathies Asplenia Cardiomyopathy Pulmonary Fibrosis High Grade SMN’s

18. Late Effects Every system can be affected Late effects increase with age Screening and early detection are vital

22. KNOWLEDGE*AWARENESS*EDUCATION*REFERRAL

23. Cancer Center Primary Care Provider Survivor Partnerships

24. Transition of Survivor Care Necessary for Most Childhood Cancer Survivors in US Multidisciplinary LTFU programs collaborate with PMDs in the community. Survivorship programs are a resource to provide coordination of care for the survivor.

25. Pediatric Resources for Health Care Children’s Oncology Group Beyond the Cure NCI Next Steps Clinic at CHW

26. Thank You