Unmet needs: Adolescents and young adult cancer patients lack psychological, social support

A cancer diagnosis for adolescents and young adults can be especially challenging, and new research shows the social, psychological and informational support these patients need might be going unmet.

Compared to both children and older adult cancer patients, adolescents and young adults, ages 14-39, demonstrate a different set of psychosocial needs and issues related to their unique age-related development. Whether these patients are treated in a pediatric or adult setting can influence their clinical and psychosocial well-being.

A new study lead by University of Michigan Comprehensive Cancer Center researchers shows significant proportions of patients in this age group are not getting their care needs met. Results from the study were published in the journal Cancer.

"When patients in this age group are diagnosed with cancer, they face issues like premature confrontation with mortality, changes in physical appearance, disruptions in school or work, financial challenges and loss of reproductive capacity, that can all be particularly distressing," says Bradley Zebrack, Ph.D., MSW, MPH, associate professor of social work at the University of Michigan.

"Whether it's mental health care, information for topics like infertility, or other aspects of care like camps or retreat programs, this study shows that many of these patients aren't getting the care they need to address these unique challenges."

The researchers surveyed 215 newly diagnosed cancer patients between the ages of 14 and 39, assessing the patients' use of and desire for various information resources, emotional support services and practical support services.

They found that patients in their 20s were significantly less likely than teens and patients in their 30s to report using mental health services and were more likely to report an unmet need for cancer information, infertility information and diet/nutrition information.

Additionally, compared with teens who were treated in pediatric settings, young adults treated in adult, as opposed to pediatric, facilities were more likely to report an unmet need for age-appropriate Internet sites, mental health services, camp and retreat programs, transportation assistance and complementary and alternative health services.

Zebrack, the study's lead author, says because there's a lack of research surrounding the needs and desires for care of patients in this age group, it can be hard for health care professionals to establish age-appropriate services to meet their unique psychosocial challenges.

He says the results of this study might help medical professionals better tune their care to meet the needs of their adolescent and young adult patients.

"Our research shows increasing patient referral to community-based social service agencies and reputable Internet resources can enhance the care and improve the quality of life for this group of patients," he says. "The more we know about their needs, the better support health care professionals will be able to provide."