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Focus on adolescents, young adults

CCH Newsletter - Spring 2012

Cancer180, AYA Council 
cater to their needs

By Sara Farris

They’re too old for the pediatric playroom and too young to relate to a waiting room of older patients. That’s the experience felt by many adolescent and young adult (AYA) cancer patients.

AYA Advisory Council member Greg Alquiza

About 72,000 teens and young adults are diagnosed with cancer each year in the United States, according to the National Cancer Institute. Their particular needs, both medical and developmental, make them misfits in either pediatric or adult centers.

But that’s all changing, and 
MD Anderson is one of the leaders ensuring it.

Not only does the institution focus on enhancing the care and experience for AYA patients, but it also works directly with patients and survivors to guide its programs.

It’s just not the same

Some of the most common remarks Elsa Morse, child life specialist who also works as a young adult specialist at MD Anderson Children's Cancer Hospital, hears when visiting with young adult patients are that:

  • they feel alone;
  • they’ve rarely met or even seen another patient their own age going through what they are;
  • they’ve lost their independence and are relying on their parents again;
  • they’re isolated from friends due to treatment;
  • as survivors, their friendships may have changed through cancer; and
  • they find themselves with an experience that few of their peers can understand.

During the past two years, the Anderson Network, a program of MD Anderson’s Department of Volunteer Services, has designed a special initiative for young adult patients, survivors and their friends called Cancer180.

The MD Anderson-based program got its name from a young caregiver who said that when cancer strikes, life does a 180. Activities are open to all young adult patients and survivors, ages 18 to 39, regardless of where treatment is received.

Cancer180 members participate in a cooking class.

Throughout the year, social events such as bowling, pottery making, cooking classes and other activities are arranged to bring young adult patients and survivors together in a fun setting.

“We’ve found that traditional support groups don’t always appeal to some in this age group. Providing the opportunity for them to connect in a more social, non-medical environment allows the story sharing to occur in a fun and natural way,” says Marisa Mir, program coordinator for the Anderson Network.

“I like the camaraderie I get when I go to the Cancer180 events,” says Mark Gardner, a 28-year-old leukemia survivor. “It gives me a chance to see what other survivors are doing with their lives and catch up outside of the hospital. Plus, many of us share common issues as survivors, so we can discuss how we’re handling them.”

Patients know best

Patients and their families are the experts about their bodies and should be viewed as partners, not recipients, when it comes to planning care.

Believing in this concept, the Children’s Cancer Hospital began an initiative within the Division of Pediatrics and MD Anderson to show the importance of family- and patient-centered care as part of its daily operations.

Led by Patty Wells, director of family-centered care, a Family Advisory Council was formed in 2008 and includes parents of pediatric cancer patients and hospital staff. The success of that council spurred an idea to create a patient advisory council.

The AYA Advisory Council began in 2009 with members — 12 young adult patients and 14 staff — from various areas throughout MD Anderson.

“The AYA Council has been a way for me to explore the survivorship stage of cancer and the ups and downs that come with it,” says Chad Tremont, a 26-year-old lymphoma survivor and co-facilitator of the council.

“I like that our council actually has an impact on what services may be developed. I’ve also gained a better respect for the staff and what they’re trying to do.”

Elsa Morse (center) values the insights she gains 
from the AYA Council.

Morse has been a member of the council since its inception and continues to value the insights she gains at monthly meetings.

“I like to hear the varying perspectives from our patients on active treatment to our survivors who have been off treatment for years,” she says. “When it comes to meeting the needs of this age group, there’s no ‘one-size-fits-all’ concept that applies. We must recognize that to develop better patient and survivor programs.”

Although Morse is right that not every AYA program or service will meet all needs of MD Anderson’s AYA population, the institution is working hand in hand with patients to create programs and services for this unique age group.

The hope: that no AYA patients will feel alone or without support through their cancer journey.

© 2015 The University of Texas MD Anderson Cancer Center