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Young Cancer Survivors Not Getting Their Information Needs Met

Young cancer survivors are not getting their questions answered according to a recent CPIC study. In a study recently published in the Journal of Cancer Survivorship, CPIC Research Scientist Theresa Keegan, Ph.D., M.S., examined the degree to which adolescent and young adult (AYA) cancer survivors received the information and services they needed, and found that the majority did not.

“We studied 523 adolescents and young adults diagnosed with acute lymphocytic leukemia, Hodgkin’s lymphoma, non-Hodgkin’s lymphoma, germ cell cancer, or sarcoma in 2007–2008,” Dr. Keegan explained. Participants completed surveys a median of 11 months from diagnosis.

The study found that the majority of AYAs who needed services did not receive them (unmet service needs ranged from 29% for in-home nursing to 75% for support groups). The majority of AYAs who needed a pain management expert, physical/occupational therapist, mental health worker, or financial advice on paying for health care did not receive these services.

Recently diagnosed AYA cancer survivors were also found to have substantial unmet information needs. More than half the participants reported unmet information needs relating to handling concerns about getting another type of cancer or the cancer returning, cancer treatments, and possible long-term side effects of treatment and complementary and alternative treatments. Between 25% and 50% had unmet information needs related to staying physically fit, meeting other AYA survivors, nutrition and diet, financial support, fertility, and risk of other family members getting cancer.

Blacks, American Indian/Alaska Natives, and Hispanics were more likely than non-Hispanic whites to report unmet information needs, as were men, survivors who reported physical health and emotional problems, and survivors not currently in treatment “Close medical follow-up and management of late effects as well as providing information and service referrals may reduce these needs in AYA cancer survivors,” Dr. Keegan said.

“The reasons behind the greater unmet information needs in blacks, American Indian/Alaska Natives, and Hispanics in our study likely are complex and may be related to previously documented racial/ethnic disparities in treatment and outcomes.”

The study urged additional studies in an effort to identify why racial/ethnic disparities exist so that culturally appropriate materials and services can be better accessed.