A team of researchers from The University of Texas at Arlington and the University of Central Florida have determined that years after going into remission, many adult cancer survivors still encounter challenges arising from their disease and its treatment.
From anxiety about a cancer recurrence to physical problems such as chronic pain, survivors aren't quite done battling the effects of cancer even 2, 5, and 10 years after treatment for the disease.
The study, "Current unmet needs of cancer survivors: Analysis of open-ended responses to the American Cancer Society Study of Cancer Survivors II," is published online and in the February issue of Cancer, a journal of the American Cancer Society.
"So often, the expectation is that a cancer survivor should be grateful for having survived a diagnosis of cancer. And while this may be true, those survivors with debilitating, lingering effects of cancer and its treatment are not always acknowledged within healthcare systems as needing continued care based on their cancer survivor status," said Gail Adorno, assistant professor in the UT Arlington School of Social Work and co-principal investigator on the study.
"Our findings suggest that cancer survivors do experience a variety of unmet needs from having had cancer and/or its treatment," Adorno said.
To gauge the unmet needs of cancer survivors, researchers assessed responses from an American Cancer Society survey of 1,514 participants, age 18 years or older. The participants were randomly selected from population-based cancer registries in 14 different states and survivors of breast, prostate, colorectal, skin melanoma, bladder, or uterine cancer. They responded to the open-ended question: Please tell us about any needs you have now as a cancer survivor that are not being met to your satisfaction.
A six-person interdisciplinary team spent more than 200 hours analyzing the answers, coding them into 16 themes of responses. The themes ranged from financial unmet needs to personal control, including the inability to control urine and lack of sexual function.
Mary Ann Burg, professor of social work at the University of Central Florida and co-principal investigator, noted that improvements are needed concerning public awareness of cancer survivors' problems, honest professional communication about the side effects of cancer, and the coordination of medical care resources to help survivors and their families cope with their lingering challenges.
The average number of unmet needs per survivor was 2.88, with breast cancer survivors identifying more unmet needs than other survivors in the study. Survivors most frequently expressed physical problems, with 38 percent saying they were an issue.
Personal control—such as the ability to plan and make decisions with regard to one's own health care, talking about one's cancer to employers or others, or the ability to move as desired—was one of the dominant themes in the responses, having not been previously identified in the literature on unmet needs.
The average number of needs declined with age, but did not differ consequentially by gender. However, significantly more men than women identified with the themes of physical needs and personal control needs.
Explore further: Many cancer survivors have unmet physical and mental needs related to their disease and its treatment
Burg, M. A., Adorno, G., Lopez, E. D. S., Loerzel, V., Stein, K., Wallace, C. and Sharma, D. K. B. (2015), "Current unmet needs of cancer survivors: Analysis of open-ended responses to the American Cancer Society Study of Cancer Survivors II." Cancer, 121: 623–630. doi: 10.1002/cncr.28951