AYA Cancer: The Lost Tribe

Transcription

1 AYA Cancer: The Lost Tribe Date: February 22, 2010 Leah Kroon, MN, RN None 1. Discuss why AYA cancer outcomes are not keeping up with pediatric and/or adult cancer patient outcomes 2. Identify special challenges for AYA patients 3. Identify special areas of programmatic focus for AYA cancer patients and survivors 1

2 Source: SEER AYA monograph, 2006 Cancer is the leading cause of disease related death among AYAs. Survival rates for AYAs have not increased since

3 Data from the US Surveillance, Epidemiology, and End Results Program, Source: SEER 18, , ages

4 2% of cancers age Male predominance is greatest age % T-cell higher than younger age groups Philadelphia chromosome + 1.3% age % age % age Lower incidence of favorable cytogenetics Greater treatment related morbidity and mortality esp AVN 20-30% survival advantage if treated on pediatric protocols Five-Year Survival Rate of Acute Lymphocytic Leukemia (ALL) Patients, Ages % 55% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% National Seattle Children s 4

5 Soft Tissue Sarcomas (STS) Overall, STSs are rare 2-3/100,000 persons of all ages 5 th most common cancer age (7.7% of tumors) 7 th most common age (6.6% of tumors) RMS = 50% of STSs in patients younger than 20 Ewing s/ ppnet 2 nd most common During the adolescent years the incidence of RMS decreases and other types of STS become more prevalent. Among those with rhabdomyosarcoma and embryonal sarcoma,15-29-year-olds had both a lower survival rate and a less favorable survival improvement trend than children with these types of sarcoma. Survivors of soft tissue sarcomas, especially those who received multi-modal therapy, have a significantly increased risk for the development of second malignant neoplasms. Alveolar histology Incomplete resection / unresectable Local invasiveness Large size (>5cm) Nodal involvement Distant metastases at diagnosis (30% of survivors) Age over 10 years Unfavorable site: parameningeal bladder, prostate, abdomen trunk extremities 5

6 The survival advantage: For patients >18 37% survival on adult protocols 62% survival using pediatric treatment guidelines (Ferrari, et al. 2003) Delayed diagnosis Poor or no insurance coverage Variable sites of care Low enrollment in clinical trials Different tumor biology? Developmental tasks Social dynamics and communication styles Higher risk for depression / suicide?? Late effects / reproductive issues Sense of invincibility Lack of routine medical care Physicians poorly trained or unwilling to care for AYAs Under-recognition by medical professionals of cancer and it s signs and symptoms in this age group Lack of health insurance 6

7 SEER Monograph 2006 Percent of Patients without insurance, by age Delays in cancer diagnosis in underinsured young adults and older adolescents. Martin, et al Lagtime between first symptom or sign and definitive diagnosis is 13.1 weeks longer for patients with public or no insurance than for patients with private insurance. Advanced stage associated with longer lagtimes. 100% 80% 60% 40% 20% 0% < >40 Age (Years) Community Sites Tertiary Cancer Centers* *academic medical centers, etc. 7

8 Inpatient oncology units nationwide: Pediatric: 10% of patients more than 15 years old Adult: 10%of patients less than 40 years of age Incidence of cancer increasing: 1/168 in year olds (Bleyer, A. 2008) What is the best site of care? Today, it depends on the diagnosis CESS/EICESS; Paulussen 2004, unpublished EFS by Treatment Center (Ages 15-20) Identical treatment protocol: CESS81-EICESS92, Paulessen, ASCO educational book

9 Higher level of tolerance of side effects? Difference in the way dose adjustments are made? Difference in supportive care? National research agenda has focused on patients <15 years and >40 years of age. Patients registered with cancer cooperative groups ( ) 72% of children <15 24% of year olds < 2% of year olds Few discrete AYA cancer trials Multiple interviews, patients, and time-points: These are the topics the patients want to talk about. Abby Rosenberg, MS, MD 9

10 Abby Rosenberg, MS, MD Reproductive health = priority issue for AYAs Among AYA patients Fertility concerns as they relate to QOL are #1 priority 75% express wish to have children in the future 30-60% don t remember conversations about preservation Barriers still prevalent for both AYAs and providers Levine J, JCO 2010 Loren AW, JCO 2013 Zebrack B, Cancer

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