Adolescents and young adults often are caught between two worlds when they are diagnosed with cancer. About 70,000 people between ages 15 and 39 are newly diagnosed with cancer each year in the United States, about 5 percent of new cases.
Patients may be referred to either pediatric or adult oncology centers, often resulting in dramatically different courses of treatment. Although cancer survival rates have improved dramatically in recent decades, the outcomes for the adolescent and young adult age group have lagged behind. The cancers that affect this group often are those more associated with the pediatric population—acute leukemia, lymphoma, sarcoma and germ cell tumors—and frequently respond better to the therapies developed for younger patients.
Johns Hopkins All Children’s Hospital is enhancing its Adolescent and Young Adult (AYA) Oncology Program this spring, focusing on patients ages 15-21. The doctors are available for consultations with older patients on a case-by-case basis. The goal is to help teens and young adults understand and adjust to the impact of cancer on their developing bodies and lives.
The hospital’s program:
- Offers expertise specific to each type of cancer
- Facilitates access to clinical studies through the Children’s Oncology Group and other organizations
- Addresses fertility concerns
- Provides inpatient and outpatient academic support with dedicated teachers
- Teaches coping skills through the assessment and support of a psychologist, social workers, care coordinators and a nutritionist
- Creates social support through activities
“We will bring all the services this age group will need,” says Peter Shaw, M.D., deputy director of the Johns Hopkins All Children’s Cancer & Blood Disorders Institute who joined the hospital in 2016. “Creating a package of services that meets all of these needs improves the quality of life and makes a difference for these patients. I don’t think there is another oncology program like this in Florida or the southeast that provides all of these services to this patient population.”
Meeting Unique Challenges
Patients in this age group are dealing with the challenges of moving from childhood to adulthood in addition to their cancer diagnosis. They are more likely to engage in higher-risk behaviors such as smoking, excessive drinking and drug use or otherwise not complying with the treatment guidelines. Sometimes they are sorting out their school options, career goals, sexuality or other aspects of their lives. The Johns Hopkins All Children’s AYA program will help by matching them with a navigator to assist them and providing other support.
“Treating one of these patients is not like treating a 50-year-old, who may be more established in life, or treating an 8-year-old, whose parents likely will make the child show up for appointments and comply with the treatment,” says Shaw, who will be director of the AYA program. “AYA patients require focused attention and support. We must not leave them to feel alone.”
Fertility concerns are a key issue after a cancer diagnosis for the AYA age group. Shaw and his team discuss this issue with each patient and family, so they can make informed decisions along the course of treatment.
The AYA population historically has had the highest rates of uninsured or underinsured individuals. Only two states have insurance coverage that includes fertility preservation, and for many, it can seem cost prohibitive. For males, it costs several hundred dollars to bank sperm and for females, several thousand to store eggs. Shaw is working with the Johns Hopkins All Children’s Foundation to raise money to cover fertility preservation costs for patients who need the support when preservation is medically advised. One female patient already has benefited.
“We want to address the concerns of these patients and support them as completely as possible,” Shaw says.
The AYA program also helps patients and families with academic and psychosocial support. The hospital has a team of teachers to help inpatients and outpatients keep up with their schoolwork, and the Johns Hopkins All Children’s Institute for Brain Protection Sciences recently added psychologist Melissa Faith, Ph.D., who will have a focus of working with cancer patients. She will assess patients and families, help them develop coping skills and counsel them during what can be a difficult stage of life even without confronting cancer.
“Having a good psychologist available can really make a huge difference,” Shaw says. “We’re fortunate to be at a pediatric academic medical center that values treating the whole patient and not just a disease.”
To refer patients to the Johns Hopkins All Children’s Adolescent and Young Adult Oncology Program, call 727-767-7337.