This document discusses barriers to cancer care for adolescents and young adults (AYAs), including a lack of specialized centers for their age group, transitioning between pediatric and adult care, and being a medically underserved population. It notes AYAs face health disparities like unequal access to care, inferior outcomes, and unequal burden of morbidity and quality of life. Diagnostic delays can occur from ignoring symptoms, lack of access to care, and physicians not considering cancer. Treatment barriers include difficulties with intensive dosing schedules, side effects impacting daily life, and pressure to remain "normal." Survivorship brings additional long term risks. The adult oncology setting does not provide a peer group and patients may feel out of place developmentally

1. Barriers to the Care of Adolescents and Young Adults with Cancer in the Medical Oncologist’s Office AnuDham MD Cancer Care Centers of South Texas

2. One in every 168 Americans develops invasive cancer betweenage 15 to 30 years No specialized centers of care, transition between adult and pediatric Medically underserved population, “special population

3. What Makes a Person Part of a “Special Population”? Age Race and ethnicity Gender Income Insurance status

4. Health Disparities Unequal access to health care for segments of a population Inferior health outcomes Unequal burden morbidity quality of life survival

5. What ELSE? Rural environment Abilities/disabilities Physical Cognitive Educational Sexual orientation Demographic and social characteristics that are different from the majority

6. Diagnostic Delays Ignoring symptoms (patients), sense of invincibility Insurance and access to healthcare, usually no “well” visits Not thinking about cancer (physicians) “Empirical treatment”, antibiotics etc Impact cancer stage and hence survival

7. Treatment Barriers Dosing intensity in cancer treatment Adherence to schedules and regimens (practical and psychological issues) Resistance to disfiguring surgery, mastectomy, colostomy, amputation, orchiectomy Higher use of alternative medicine, specially female

8. The Self Practical problems in social life Alopecia Weight gain or loss Mucositisand dermatitis Bleeding, infection and contagiousness Susceptibility to infectionand need for isolation Impaired sexuality Pressure to stay “normal” Suspicion if partner staying in relationship due to guilt

9. Survivorship More risk taking behavior Oligospermiaand ovarian damage Fertility Persistent anxiety, Damocles syndrome School, work, wages Family relationships

10. Survivorship Lifelong cognitive deficit Disorganization IQ Poor emotional control Osteoporosis Heart disease Premature menopause Chronic pain

11. Adult Oncology Office “ New Doctor” Surrounded by older adults, no peer group Chronological vs developmental age Dependency on parents Higher expectation of independence Insurance access

12. Independence Appt making Med refills Medical history Healthy life style choices Life goals Stress management Bill paying

13. Interventions Honesty in communicating Peer groups Encourage independence in schedules and treatment Foster control Plan transition early if pediatric cancer survivor