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September 4, 2018

The 'invisible cancer generation': How hospitals are helping adolescent cancer patients adjust

Daily Briefing

    Editor's note: This popular story from the Daily Briefing's archives was republished on Nov. 27, 2018.

    When Matthew Zachary was treated for a brain tumor in his early 20s, he coped with "persistent feelings of isolation," Marlene Cimons reports for the Washington Post. As a young adult cancer patient, he'd outgrown pediatrics, but his needs were still distinct from adult cancer patients.

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    That was 20 years ago, and today some hospitals have launched programs focused on addressing the age-specific needs of patients like Zachary differently.

    'The invisible cancer generation'

    According to the National Cancer Institute (NCI), there are about 1.7 million new cases of cancer diagnosed each year, and of those, around 70,000 involve adolescents and young adults.

    Zachary, who founded the advocacy organization Stupid Cancer, described that population, commonly referred to as AYAs, as "the invisible cancer generation." According to Cimons, research, survival rates, and treatment for AYAs has not kept up with those of young children and older adults.

    As a result, their treatment plans can vary widely, Cimons reports. When AYAs have a cancer that's more common in young children, they're treated in pediatrics. When their cancer is one that's more common among older patients, they're sent to a medical oncologist.

    Maria Olsson, a clinical nurse specialist in cancer rehabilitation at Sahlgrenska University Hospital in Sweden, said, "[AYAs] talk a lot about being in the 'wrong place'—being an adolescent among toddlers, screaming and smelling diapers, and being a young adult among old people talking about pensions and the stock market," Olsson said. "These patients rarely end up with someone from their own generation."

    Further, AYA cancer patients have age-specific concerns, including career, education, fertility, body image, and sexuality, Cimons reports. According to Lori Wiener, a social worker at the NCI, AYAs' needs "are not met by pediatric and adult facilities, so they fall between the cracks."

    What hospitals are doing to help AYAs

    In recent years, several hospitals have introduced programs aimed at supporting AYAs, Cimons writes.

    Baylor Scott & White Medical Center, for instance, completed a $2 million renovation to provide more age-appropriate accommodations to AYAs. These patients now have a dedicated wing within the hospital, equipped with smart televisions, WiFi, a large lounge area with game tables, and a coffee bar to help get  patients out of their rooms to socialize, Cimons reports. Baylor also connects patients with a team that consists of a nurse navigator, a social worker, and others trained in helping AYAs with the emotional, social, physical, and financial effects of cancer.

    Children's National Health System in Washington, D.C., offers a navigator for AYA patients as well as a "teen room" for inpatients. MD Anderson Cancer Center in Houston provides counseling and other support, as well as fertility-preservation options, as some cancer treatments can lead to sterility, Cimons writes.

    According to Cimons, other large cancer centers that have started AYA support programs include Cincinnati Children's Hospital, Seattle Children's Hospital, St. Francis Cancer Center in South Carolina, and Oregon Health & Science University.

    According to Karen Albritton, an oncologist and the medical director at the Fort Worth Adolescent and Young Adult Oncology Coalition, providing AYAs with access to navigators gives them "trained people they can talk to" about their emotional problems. Albritton's facility also offers support groups, as well as cooking and yoga classes. "Sometimes a patient may not be ready for a support group but will come to a class and meet a few others who will say, 'You should come to the support group,'" she said. "It's a way in."

    Zachary said he's seen progress in how hospitals work with AYA cancer patients since his brain tumor treatment two decades ago. He pointed to the availability of online support today, which can help patients connect with one another. "What I went through—the depression, the anxiety and stress—still exist," he said. "But now, the community (of support) is there. Life is better."

    But while things have improved, advocates say more is needed. According to Cimons, advocates, including Zachary, want to see AYA-focused services become available outside of large medical centers.

    "The hospital really needs to care not just about your living, but your rehabilitation," Zachary said. "You have to be treated like a 26-year-old, not a 96-year-old" (Cimons, Washington Post, 8/19).

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