Adolescent and Young Adult Program Wendy Woods-Swafford, MD, MPH Rachel Dow, AYA Program Coordinator
Objectives ∗ Discuss the scope of adolescent and young adult oncology ∗ Review barriers to diagnosis and treatment ∗ Recognize challenges facing this population ∗ Identify resources to improve care ∗ Discuss process ∗ Identify how needs are met
Why are YOU talking about AYAs? ∗ No disease stops and starts at the age of 18 ∗ Cancer is a biologic continuum ∗ We have an obligation to this population ∗ Because someone should
Why AYA ∗ Any new field starts simply in response to a distinctive need, and grows when expertise is required to meet the need ∗ AYA emerged to address the needs expressed by AYA cancer patients
Defining a Population ∗ AYA population comprises individuals aged 15 through 39 years at cancer diagnosis ∗ This range was chosen to be inclusive rather than exclusive ∗ The entire age range continues to experience a relative lack of improvement in survival ∗ Our chief concern of AYAs with cancer is the lack of a “home” in research and health care
Incidence ∗ Cancer between the ages of 15 and 30 years is ~8 times more common than in those <15 years ∗ Cancer’s of AYA’s are unique in the distribution ∗ The diagnoses change dramatically over the age spectrum ∗ The incidence is increasing steadily; predicted 1/168 in 15-30 year age group
US Incidence 70,000/Year
Incidence of AYA Cancers in the US ∗ Cancer by age: ∗ Age 1-15 9,000 cases ∗ Age 15-19 4,100 cases 7% ∗ Age 21-24 7,400 cases ∗ Age 25-39 58,000 cases ∗ > Age 40 1,451,060 cases Bleyer A et al. Cancer J Clin 2007; 57:242-255.
Cancer’s Affecting AYA’s ∗ 86 percent of cancers in this age group ∗ Breast cancer ∗ Lymphoma ∗ Melanoma 2/3 rd ’s ∗ Germ cell tumors ∗ Thyroid carcinoma ∗ Sarcoma (bone and soft tissue) ∗ Cervical carcinoma ∗ Leukemia ∗ Colorectal carcinoma ∗ Central nervous system tumors
Mortality ∗ From 1975 -2009, adolescents and young adults with cancer in the United States had less mortality reduction and survival improvement than either children or older adults with cancer ∗ Among AYA’s, cancer became the most common cause of death due to disease ∗ 12,000 will die in the US this year ∗ Survival improvement trends predict a worse prognosis for young adults diagnosed with cancer today than 25 years ago ∗ The survival deficit is increasing with longer follow-up of the survivors
Traits Beyond Age ∗ AYA’s possess both developmental similarities and important differences across this age range ∗ These affect care-seeking patterns, adherence to recommended treatment and follow-up care, and ultimately - disease outcomes
Development Similarities Differences ∗ Share a sense of invincibility and ∗ Vary widely in terms of their limited awareness of their own emotional age and maturity as well mortality as life stage ∗ Approaching important social ∗ Cultural differences may influence milestones attitudes about disease and health ∗ Diagnosis abruptly derails these ∗ Provider of oncology services processes, thrusting AYA’s into ∗ AYA providers must adapt to and uncertainty, unwelcome or uncomfortable dependent states meet both the medical and the ∗ Range encompasses reproductive psychosocial needs of the patients in years this age range
Survival Improvement Gap ∗ Improvement in overall 5-year cancer survival in this age cohort has lagged far behind that Improvement in 5 Yr Relative Survival Invasive Cancer, SEER 1975-1997 achieved in other age groups ∗ Survival improvements have been achieved in patients diagnosed at age 15 or younger and steady improvement have been made among those over age 40 ∗ Little or no progress has been seen in the AYA population ∗ In those aged 25-35 yrs, survival has not improved in more than two decades
Survival Gap 5-Year Survival of Patients with Cancer by Era, SEER, 1975-1998 ∗ 15 to 39 year-olds diagnosed with cancer in 1975-1980 had dramatically better survival than most other age groups ∗ Survival rates for this population have stagnated while survival improvements achieved in younger and older age groups have exceeded AYAs’
Increased Risk of Late Mortality ∗ Long-term survivors of adolescent cancer face an increased risk of death beyond 5 years from their cancer ∗ Excess mortality is due to late recurrences of the original cancer, second cancers, and heart and lung disease as a consequence of the therapy of the original cancer
Knowledge Gap ∗ Relatively little is known about factors that affect incidence, outcomes and QOL ∗ Biologic, Genetic, Epidemiologic ∗ Therapeutic ∗ Psychosocial ∗ Economic factors
Physiologic Characteristics and Possible Biologic Influences ∗ Post-pubertal adolescents and young adults are physiologically distinct from younger children in body conformation, hormonal milieu, and organ function approximate those of a “full-grown” adult ∗ The distribution of tumor types across the AYA age range overlaps somewhat with both the common list of pediatric cancers and those commonly occurring in older adults
Biology & Survival ∗ Survival differences are a result of variations in tumor biology, patient physiology and health services received ∗ ALL in a 6-year-old differs in biologic factors compared to ALL in a 19-year old ∗ Breast cancer in a 30-year-old woman or colon cancer in a 35-year-old man may have biologic characteristics not found in patients with what appear to be the same diseases at 65 years of age ∗ Biologic differences likely interact with or may be due to genetic, metabolic, hormonal, environmental, pharmacokinetic, social, and other human factors that affect disease susceptibility, treatment response, and outcome
Provider Delays in Evaluation ∗ Providers tend to have a low suspicion of cancer in this population ∗ Symptoms of cancer may be attributed to fatigue, stress, or other causes ∗ AYA’s may see a variety of health care providers, including pediatricians, internists, family physicians, emergency room physicians, gynecologists, dermatologists, gastroenterologists, neurologists, surgeons, orthopedists, and other specialists ∗ Additionally, many providers lack the unique skills to care for adolescents
Patient Delays in Evaluation ∗ See themselves as invulnerable ∗ They ignore or minimize symptoms and delay seeking medical attention ∗ May be embarrassed or afraid to seek treatment for symptoms that involve the genitalia or bowel function ∗ Many AYAs have no primary care provider and do not receive routine care ∗ May delay seeking care because they do not know where to go ∗ When they do seek care, they may give incomplete health histories
Limited Health Insurance Coverage ∗ Young adults have the highest percentage of uninsured or underinsured individuals ∗ Those in jobs that offer health coverage may choose high deductible, narrow benefit plans due to cost ∗ Following diagnosis, AYAs may find themselves with limited access to care and may incur high levels of debt for the cost of care not covered by insurance ∗ Even those with insurance may be liable for substantial out-of-pocket treatment and non-treatment costs causing them to forgo recommended follow-up
Inadequate health insurance increases the risk of a delay in diagnosis & advanced disease ∗ Bleyer et al reviewed 270 patients aged 15 years to 29 years at MD Anderson, newly diagnosed with 6 common cancer types ∗ Lag time from the onset of first cancer-specific symptoms or signs to a definitive diagnosis were reviewed ∗ Insurance status was found to be significantly associated with lag time, whereas race/ethnicity, age, gender, marital status, and surrogate measures of socioeconomic status (SES) were not ∗ The mean lag time was 7 weeks longer in underinsured patients ∗ In cancers that were evaluable for stage at diagnosis, an advanced stage of disease was associated with longer lag times Bleyer; Cancer Month 00, 2012
Affordable Care Act ∗ The Act has enabled 2.5 million more individuals between the ages of 19 years and 25 years to 2009 US % insured by age and income have health insurance during the first 15 months after its passage on September 23, 2010: from 64% covered by their parents’ policies to 73% within 9 months
Support Services ∗ Services available to AYAs with cancer (and their families/caregivers) are limited ∗ Needs are broader in scope and intensity than among younger and older patients because of the many emotional, developmental, and social changes and transitions ∗ Cancer prevention and early detection receive little emphasis in health care for the AYA population
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