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SURVIVORSHIP
Targeting Young Survivors By Daniel Denvir
A
dolescent and young adult (AYA) survivors of cancer are, like their older counterparts, a growing population. And like most other cancer survivors, many are not receiving necessary survivorship care, as outlined by the Institute of Med icine’s (IOM) 2005 report on the subject. Youth issues were the subject of a number of presentations and abstracts at the 5th Biennial Cancer Survivorship Research Conference. Top AYA issues include communication about longterm care, and interventions to promote exercise and discourage risk-taking behavior. Researchers at the University of California Los Angeles assessed the state of AYA survivorship information provided at community-based organizations (CBOs), because accurate knowledge can empower people to seek needed care. The study relied on qualitative analysis of interviews with CBO leaders, including CEOs, program directors, and founders. The researchers found that CBO leaders were knowledgeable and interested in providing survivorship education. CBO leaders suggested that such communication should begin before the end of treatment and that communication with young people be positively framed and sensitive to youth
“culture” to help prevent the survivor from tuning it out. AYA survivors are often “lost in transition” when they cease treatment and begin a lifetime of survivorship. A survey of 376 survivors recruited from LIVESTRONG Survivorship Centers of Excellence found that 33% lacked copies of medical records, 48% lacked a written treatment study, and another 48% lacked a survivorship care plan.
“A greater support from parents is related to fewer symptoms of depression, withdrawal, and aggressive behavior, better school performance, and more involvement in social activities for siblings.” —Melissa Alderfer, PhD
The lack of a survivorship care plan and nonwhite ethnicity were found to be associated with less confidence in seeking survivorship care. The University of Colorado Denver and its affiliate, the Children’s Hospital, are collaborating, “with a unique emphasis on transitioning into primary care.” Each patient is seen by a multidiscipli-
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OctOber 2010 I VOL 1, NO 5
nary team trained in survivorship care, including a primary care internal medicine physician, a pediatric oncologist, a health psychologist, and an oncology nurse. Each patient receives a survivorship care plan that outlines a strategy for life after cancer, with the goal of promoting comprehensive preventive and follow-up care. Feedback from participating survivors has been highly positive. “As childhood cancer survivors become
young adults, it is imperative to assist in their successful transitioning to an adult care venue in which their complete healthcare needs can be met,” the researchers concluded. Researchers at Oslo University Hospital, Norway, found that survivors of childhood malignant lymphoma are well informed about their diagnoses and treatment, but mostly unaware of the potential for long-term medical risks. These survivors are at risk for infertility, fatigue, reduced memory or concentration, heart problems, breast cancer, dental caries, reduced muscle growth, and reduced metabolism. Based on interviews with 129 adult survivors of childhood cancer, the study points to the need for more and longer term communication with survivors. A team at MassGeneral Hospital for Children, Boston, is developing a tool to assess the health-related quality of life (QOL) of AYA survivors of central nervous system (CNS) cancer. Much research has focused on survivors of pediatric CNS cancer, but AYA survivors face different social, physical, emotional, and school/work outcomes. In addition, CNS cancer survivors have worse health-related QOL than survivors of other cancers and chronic conditions. A team from British Columbia found low levels of adherence among childhood cancer survivors to long-term follow-up guidelines developed by the Children’s Oncology Group. The researchers followed a cohort (n = 976) of 5-year survivors of childhood cancer, and found that only 13.4% received all advocated tests, 49.7% some, and 36.9% none. Male and older survivors had particularly low rates of adherence. The researchers suggested that future
research examine major barriers to follow-up care and surveillance. A study of decision making and substance use in 243 adolescent survivors of childhood cancer relied on interviews with survivors who had been disease-free for at least 5 years. The study found that the rate of cigarette use was slightly higher among those surveyed than in the general population. Rates of alcohol use were slightly lower, and marijuana use was higher. The findings suggest that risk-taking behaviors among survivors of childhood cancer are still high, pointing to the need for further educational interventions. Childhood cancer can have a major impact on parents and families, including siblings. Siblings of childhood cancer patients can experience a heightened sense of responsibility and independence, but they are also at a higher risk of emotional and behavioral problems, including posttraumatic stress disorder. A study of the importance of social support for siblings of children with cancer found that siblings identified friends as providing more support than parents, and cited support from friends as most important. But the study found that parental support had a greater impact on sibling adjustment. According to lead researcher Melissa Alderfer, PhD, Children’s Hospital of Philadelphia, “greater support from parents is related to fewer symptoms of depression, withdrawal, and aggressive behavior, better school performance, and more involvement in social activities for siblings.” Researchers in New York and Texas explored the possibility of involving parents and young survivors in joint programs to encourage physical activity and a healthy diet. The researchers examined 87 minor survivors and their parents, and found a strong intraclass correlation between survivor and parent level of physical activity and body mass index. The next step is designing interventions that promote healthy lifestyles for parents and child survivors alike. Of those surveyed, 80% of survivors and parents expressed interest in web-based exercise and diet programs. Researchers at Copenhagen University, Denmark, are taking a more direct approach to exercise, recruiting 12 survivors of AYA cancer aged 22 through 39 years to train for an “extreme sport event” called The KiliMAN Adventure Challenge. The event consists of a 6-day summit of Mt. Kilimanjaro, followed by a bike race around the mountain and a marathon run. The study found that “goal-directed exercise may enable adherence to physical activity and stimulate empowering and mutual supportive networks.” ● www.AONNonline.org