Adolescent and Young Adult Program Wendy Woods-Swafford, MD, MPH - - PowerPoint PPT Presentation

Adolescent and Young Adult Program

Wendy Woods-Swafford, MD, MPH Rachel Dow, AYA Program Coordinator

Objectives

∗ Discuss the scope of adolescent and young adult

• ncology

∗ 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 ∗ 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.

7%

Cancer’s Affecting AYA’s

∗ 86 percent of cancers in this age group

∗ Breast cancer ∗ Lymphoma ∗ Melanoma ∗ Germ cell tumors ∗ Thyroid carcinoma ∗ Sarcoma (bone and soft tissue) ∗ Cervical carcinoma ∗ Leukemia ∗ Colorectal carcinoma ∗ Central nervous system tumors

2/3rd’s

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

∗ Share a sense of invincibility and limited awareness of their own mortality ∗ Approaching important social milestones ∗ Diagnosis abruptly derails these processes, thrusting AYA’s into uncertainty, unwelcome or uncomfortable dependent states ∗ Range encompasses reproductive years

Differences

∗ Vary widely in terms of their emotional age and maturity as well as life stage ∗ Cultural differences may influence attitudes about disease and health ∗ Provider of oncology services ∗ AYA providers must adapt to and meet both the medical and the psychosocial needs of the patients in this age range

Survival Improvement Gap

∗ Improvement in overall 5-year cancer survival in this age cohort has lagged far behind that 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

Improvement in 5 Yr Relative Survival Invasive Cancer, SEER 1975-1997

Survival Gap

∗ 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’

5-Year Survival of Patients with Cancer by Era, SEER, 1975-1998

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

• f pediatric cancers and those commonly occurring in
• lder 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

• ld

∗ 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

• utcome

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

• ther 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

• ut-of-pocket treatment and non-treatment costs causing

them to forgo recommended follow-up

Inadequate health insurance increases the risk

• f 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 have health insurance during the first 15 months after its passage

• n September 23, 2010:

from 64% covered by their parents’ policies to 73% within 9 months

2009 US % insured by age and income

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

∗ Lack of clinical trials for AYAO patients ∗ Arbitrary clinical trial age criteria excludes AYAs (both directions) ∗ Lack of awareness of clinical trials available to AYAs ∗ Medical and pediatric

• ncologists may not be aware
• f each other’s clinical trials

∗ Adult oncologists have few patients with “AYA cancers” ∗ More business-like models of medical oncology practice vs. academic model of pediatric

• ncology practice

∗ Money/time commitment to initial and continuing education ∗ Expected poor patient adherence to protocol ∗ Loss of patients – turf conflicts, expected good outcome ∗ Lower reimbursement expected ∗ Lack of facility conducive to AYA care and clinical trial requisites ∗ Reluctance of pharmaceutical companies to develop clinical trials for young patients

Medical Gaps

∗ Age – denial of disease ∗ Patient unprepared for illness, much less clinical trials ∗ Health insurance gap

∗ Insurance guides referral patterns

∗ For “emancipated” adolescent or young adult, entry into quality health care system may be a major issue ∗ Time constraints – school, work, and late or multiple appointments ∗ Clinic hours not friendly to student

• r working adult schedules

∗ Language barrier ∗ Educational level ∗ Trial groups not “cross-cutting” for diseases (e.g., Children’s Oncology Group vs. intergroups) ∗ Lack of social support for transportation, cost of care ∗ Lack of awareness by employers, school personnel, associates, neighbors, and community ∗ Clinical trials not a priority ∗ Financial – physicians want reimbursement for themselves ∗ Physician ego – can do things as well or better than a trial ∗ Adolescents may be less compliant than adults

“Social Gaps”

Patient Gaps

∗ 15 to 19 year-olds ∗ Dependency on parents/system – lack of independence ∗ Parental lack of education ∗ Age group least expected to take ownership of their own health care ∗ Not wishing to assume responsibility ∗ Unsure of best treatment setting (medical vs. pediatric oncology center) ∗ 20 to 29 year-olds: ∗ Access – not offered ∗ Intermediate likelihood of taking ownership of own health care ∗ School/work/family responsibilities ∗ 30 to 39 year-olds: ∗ Access – not offered ∗ Group most expected to take ownership of own health care ∗ Work/family responsibilities

Patient Gaps All AGE Groups

∗ Lack of awareness of trials or their importance ∗ Difficulty advocating ∗ Health insurance; financial burden of premiums and out-of-pocket costs ∗ Body image ∗ Transportation/housing ∗ Financial limitations ∗ Distrust – “guinea pig” issues (afraid of being experimented on) ∗ Adherence ∗ Independence/autonomy ∗ Concern about time commitment ∗ Preference to stay close to home and peers ∗ Less motivated

Family/Community Gaps

∗ Family – distance, responsibilities ∗ Want patients close to home/family ∗ Colleagues – isolation ∗ Educators – home schooling ∗ Employees – lost hours ∗ Politicians – lack of knowledge of impact ∗ Lack of awareness of clinical trial importance ∗ Lack of education ∗ Lack of guidance ∗ Inadequate community resources ∗ Lack of advocate within health care system ∗ Too much input from too many people ∗ Conflicting opinions offered by family members and/or others ∗ Isolation – lack of knowledgeable support group ∗ Afraid of experimental nature of trials ∗ Difficult dynamics – patients have both parents and children

Referral Patterns

∗ Patterns for AYAs with suspected or diagnosed cancers vary widely

∗ the “No Man’s Land”

∗ Most AYAs are treated in community centers rather than in cancer centers ∗ A robust community oncology and primary care infrastructure currently does not exist to enable patient data collection and aggregation that would support research efforts ∗ Contact with many AYA patients is lost following treatment, complicating collection of late effects and outcome data in this highly mobile population

Understudied

∗ Cancer risk and adverse cancer outcomes have been under-recognized in this population ∗ Lack of understanding of patient and tumor biology ∗ Hereditary predisposition is unknown ∗ Environmental risk factors have been identified, such as human papillomavirus (HPV) infection for cervical cancer, sun exposure for melanoma, HIV for AIDS related malignancies, and hepatitis B for liver cancer

AYA Clinical Trial Enrollment

∗ Research is constrained by exceedingly low participation in clinical trials ∗ More than 90 percent of patients with cancer under age 15 are treated at institutions that participate in NCI-sponsored trials

∗ 96% of these children are enrolled in clinical trials

∗ In contrast, only 20% of 15-19 year-olds are treated at institutions that participate in NCI-sponsored

∗ Only 10%of this group is enrolled in trials

∗ 3% of 20-39 year-olds are entered into clinical trials

Acute lymphoblastic leukemia

∗ Stock et al reviewed 321 ALL patients ages 16-21 enrolled on pediatric and adult cooperative group trials ∗ Comparison of drug dosing and scheduling identified some potentially important differences ∗ Pediatric protocol patients received more treatment with nonmyelosuppressive drugs, including glucocorticoids (both dexamethasone and prednisone), vincristine, and L-asparaginase; CNS prophylaxis was also administered earlier and with greater frequency ∗ Pediatric protocol patients received 44% more asparaginase, 36% more Dex, and 40% more VCR ∗ Pediatric protocol patients were more likely to remain on trial (20% less drop out rate) and were more likely to adhere to strict schedule of therapy

Comparative Leukemia Studies

Dose intensification matters

∗ The treatment approach for AYAs differs between pediatric and adult ALL trials ∗ Variations are seen in induction therapy, the intensity and duration of post-remission therapy, the type and intensity

• f central nervous system (CNS) prophylaxis, and the

duration of maintenance chemotherapy ∗ AYAs treated on adult studies often receive chemotherapy agents and doses that are designed, in part, to be tolerable to a broad age group, ranging from 16 to 60 years of age

Addressing the Uncertainties

∗ Adult and Pediatric cooperative groups need to jointly run studies for this age group that build on the template of the pediatric regimens

∗ The Children’s Oncology Group, CALGB, and Southwest Oncology Group have pursued such a joint protocol for ALL ∗ Enrollment has been a barrier

∗ It is clear that age and disease biology are often linked and impact significantly on treatment outcome for patients with hematologic malignancies ∗ A unified approach to clinical trial design and participation for patients of all ages with similar disease biology may hold the key to future treatment breakthroughs

Vicious Cycle

∗ Diagnosing physicians seldom refer to trials ∗ Limited biologic knowledge of cancers in this population has contributed to minimal advances in treatment ∗ Inconsistency in treatment and follow-up care, coupled with insufficient research data, has prevented the development of guidelines for treating and monitoring AYAs with cancer ∗ Few tools exist to measure the efficacy of treatment and psychosocial interventions delivered in diverse settings

Prioritize

∗ Robust research effort to better understand tumor and human factors that contribute to AYAs’ susceptibility to cancer ∗ Track response to treatment and disease outcomes ∗ High priorities basic and other biologic research on aging and patient/host-related factors ∗ Increase resources for studies of AYAs’ genetic susceptibility to cancer

Progress

∗ Inconsistency in treatment and follow-up

∗ NCCN guidelines for treating and monitoring AYAs with cancer have been published

∗ Guidelines for fertility preservation ∗ NCI Reorganization ∗ Successful survivorship models

Modeling Survivorship Care

∗ Much of what is known about late mortality and morbidity has been learned from studies focusing on pediatric cancer survivors ∗ Adolescent cancer survivors treated in the pediatric oncology setting usually are followed in pediatric-based long-term follow-up (LTFU) programs

∗ Programs provide risk-based anticipatory and proactive health care with a systematic plan of prevention and surveillance based

• n risks associated with the cancer therapy, genetic

predispositions, lifestyle behaviors, and co-morbid health conditions

∗ Follow-up care in a survivor-type program is essential for AYA’s

Enhance Collaboration

Overall restructuring provided by NCI Clinical Trials Network allows for improved cooperation between COG and Adult groups to expand clinical trials to increase treatment choices and accelerate treatment advances

Blank – Stoddard Alliance

∗ Commit to:

∗ Establish AYA as a distinct group of cancer patients, educate, and gain broad acceptance among stakeholders ∗ Increase awareness ∗ Increase education to the AYA population ∗ Improve our understanding of host, biologic and treatment factors by increasing clinical trial enrollment and tumor banking ∗ Develop standards of excellence for access to diagnostic, treatment, and follow-up care for AYAs

∗ AYA enrollment starts with a phone call from a doctor to AYA Program Coordinator at 241-4251. ∗ Name, DOB, diagnosis, when they will be coming to hospital next and if there are any needs or concerns that are known is collected ∗ AYA Program Coordinator asks if a phone conference between pediatric and adult doctor is appropriate

∗ Depending on type of disease there may be a discussion of cross over to pediatric or adult if appropriate.

Starting Process

∗ AYA Program Coordinator initiates first contact via phone or in person ∗ Introduction to program is discussed

∗ Discussion regarding fertility needs, clinical trial availability and/or other needs

∗ A needs assessment is given to patient

Starting Process continued

Name, diagnosis, demographic info Family, friends, activities involved in Psych/social questions Transportation, financial, child care, etc help available What areas the patient feels they need more support in

Needs Assessment

∗ Made up of 4 AYA Cancer Survivors, 1 rotating nurse (disciples include pediatric outpatient, inpatient and adult

• utpatient and inpatient nurses) and AYA Program

Coordinator ∗ Meets once a month ∗ Purpose is to improve AYA’s experience at the hospital and learn where we need to make changes ∗ Topics that have already been addressed ∗ Treatment binders and support available ∗ Dietician usage, nutrition and awareness ∗ Outreach to the community ∗ Caregiver support resources

Patient Advisory Council

∗ Social ∗ Desiring to know others going through what they are going through that are the same age ∗ Outings and social events ∗ Financial/Insurance ∗ Less adequate insurance, lack of savings or nest egg ∗ Fertility ∗ Want to know what the risks are and if there are any alternatives or ways to preserve

Primary Needs Identified

∗ In partnership with Children’s Cancer Connection we have started a support group for 15-35 year olds ∗ Meets once a month ∗ Family, friends welcome ∗ Purpose is to bring together AYA’s and loved ones in

• rder to feel not alone in the community

∗ Other outings are planned for the future

∗ Painting, I-Cubs games, Funny Bone

∗ Social media group is also available to those who cannot or would rather not meet in person

Social needs

∗ Have tracking tool and guidance regarding insurance questions and concerns in binder that is available to all AYA’s ∗ Directed people to Affordable Care Act Navigation support ∗ Social work referrals made to help with discussions regarding FMLA, disability and financial resources available ∗ Online financial resources through LLS society, SAMFund, Stupid Cancer, etc.

Financial/Insurance needs

∗ Partner with Mid Iowa Fertility to offer ∗ Education regarding preservation, risk factors and

• ptions for future

∗ Sperm Banking, egg or embryo cryopreservation ∗ Family planning after treatment ∗ Now able to offer same day emergency sperm banking and cryopreservation if needed

Fertility needs

∗ Helped a DMACC student talk to advisor/ professors so they could pursue treatment as well as continue school ∗ Provided same day sperm banking so a patient would have the option to have biological children

∗ Also helped find resources to help pay for storage of cryopreservation

∗ Introduced Look Good Feel Better program to Blank so teenager could have free make up class and wig

∗ One of the major psych/social concern of teenage AYA’s is the loss of hair or outwardly showing cancer effects

Specific Examples

References

Rachel Dow Rachel.dow@unitypoint.org 515-241-4251 Follow us on Social Media:

www.Facebook.com/UPHDSMAYA www.Twittter.com/UPHDSMAYA www.Pinterest.com/UPHDSMAYA