Photo:"AYA patients require focused attention and support. We must not leave them to feel alone"
Ensuring Quality Health Care for Adolescents and Young Adults
Earlier in his career, Peter Shaw, M.D., knew he was interested in making a lifelong difference for children struggling with cancer but didn't know where to focus his efforts. When discussing his thoughts with his mentor and division chief, they settled on a focus on adolescents and young adults with cancer and it has been a passion of Shaw's ever since.
This underserved age group faces special challenges because the patients often are caught between the pediatric and adult worlds when they are diagnosed with cancer. Respected by his peers and embraced by his patients and their families, Shaw has become a leading expert in this area, contributing to dozens of academic articles on the topic. His easy manner, open personality and credentials as an oncologist, allow him to stay in touch with his patients, learning more about their lives after their cancer diagnosis and treatment plan. Upon deciding to concentrate on adolescents and young adults (AYA), Shaw developed a program focused on ensuring quality care for them.
"My heart is always in the patient-care aspect," says Shaw, deputy director of the Johns Hopkins All Children's Cancer & Blood Disorders Institute. "I related to those patients pretty well socially. I can talk music with them, movies, TV and sports. It seems fairly logical that if you can bring an array of topics to discuss with your patients, you can gain their trust and be a better doctor."
Serving a Need
The AYA group is defined as those between ages 15 and 39. They represent about 70,000 newly diagnosed cancer cases a year in the United States-or about 6 percent of the total. Cancer is the fourth most likely cause of death in this age group behind accidents, suicide and homicide.
Although pediatric cancer survival rates have improved dramatically in recent decades, the AYA population hasn't been as fortunate. Patients may be referred to either pediatric or adult oncology centers, often resulting in dramatically different courses of treatment. The cancers that affect this age 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.
Even with the right therapy, patients in the AYA age range are more likely to engage in higher-risk behaviors such as smoking, excessive drinking and drug use. Or they may not comply with treatment guidelines. Sometimes they are sorting out their stage-of- life goals, including high school, post-secondary education, career goals, sexuality or other aspects of their personal lives.
"These patients are not the same as a 50-year-old with cancer, who may be more established in where they are in life. They also are not like treating an 8-year-old, whose parents likely will make them show up for appointments and comply with the treatment " Shaw says. "AYA patients require focused attention and support. We must be mindful that they may feel out of sorts with peers or worse, alone."
Meeting Unique Challenges
Shaw, who started an AYA program at Children's Hospital of Pittsburgh in 2006, is building the AYA Oncology Program at Johns Hopkins All Children's this spring, focusing on ages 15-21. He sees it as "a medical home" for patients.
The hospital's program:
- Offers expertise specific to each type of cancer
- Facilitates access to clinical studies through the Children's Oncology Group (COG) and other national organizations
- Addresses fertility concerns
- Provides inpatient and outpatient academic support with dedicated teachers
- Teaches coping skills through the assessment and support of a dedicated team that includes a psychologist, social workers, care coordinators and a nutritionist
- Creates social support through planned and self-selected activities
"We will bring all the services this age group will need," says Shaw, who joined Johns Hopkins All Children's 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."
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 the highest rates of uninsured or underinsured individuals. Only two states have insurance coverage that covers 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 financial support when preservation is medically needed.
"We want to address the concerns of these patients and support them as completely as possible," Shaw says. "We are grateful to businesses and individuals who are willing to help these young people and we encourage interested parties to reach out to our Foundation to learn more."
The Johns Hopkins All Children's Institute for Brain Protection Sciences recently added psychologist Melissa Faith, Ph.D., who will be dedicated to working with cancer patients. She will be part of our AYA team to assess patients and families, helping them develop coping skills while counseling with them during what can be a difficult stage of life even without confronting cancer.
"Having a well-trained psychologist who is available to AYA patients is both a game-changer and lifesaver," Shaw says. "Being part of a pediatric academic health system that values and treats the whole patient and not just a disease is personally fulfilling and meaningful to me as a physician. And this program casts light for our patients where sometimes it may appear that there is very little. From my point of view that is what makes Johns Hopkins All Children's Hospital so special."
Visit HopkinsAllChildrens.org/cancer to learn more about the Johns Hopkins All Children's Hospital Cancer & Blood Disorders Institute.