There are now more people surviving cancer than ever, and the expectation is that 10 years from now more than 19 million people will have put the disease behind them.1 However, many of those survivors continue to have physical and psychological difficulties years after their battles with the disease are over. Just what problems are these people coping with?
Mary Ann Burg, PhD, LCSW, of the University of Central Florida, in Orlando, and her colleagues launched a study to get some answers. They based their research on the American Cancer Society’s 2010 ACS Survey of Cancer Survivors II (SCS-II). That survey queried 9,105 cancer survivors about their unmet needs related to their cancer occurrence. It was a national cross-sectional survey of survivors selected at random from population-based cancer registries in 14 states. Criteria for inclusion in the SCS-II survey were age 18 years or older and a diagnosis of a local, regional, or distant cancer based on SEER summary staging. Participants had to have had a diagnosis of breast, prostate, colorectal, skin, melanoma, bladder, or uterine cancer 2, 5, or 10 years before the sampling.
AN OPEN-ENDED QUESTION
Burg’s team examined a subset of the SCS-II’s respondents who answered 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. The significance of an open-ended question is that, although it allows respondents to answer in depth, those answers are rarely analyzed because they are responded to less frequently than fixed-format questions, and are more difficult to quantify and code.
The researchers chose only those cancer survivors who actually had needs, excluding those who responded as satisfied, unsure, or who did not provide a response. After eliminating those surveys, 1,514 survivors’ surveys remained: 524 men and 990 women, ranging in age from 24 years to 97 years. The most frequent cancer among these respondents was breast cancer, then prostate, colorectal, bladder, uterine, and skin cancers. Recent survivors answered the open-ended question more than any other group.
Men who had had prostate cancer, as well as people older than 65 years, responded that they currently had physical needs and personal control themes. Physical needs were described as needs and issues experienced in or affecting the body, including pain, symptoms, sexual dysfunction, and care of body (such as diet, exercise, and rest).
The researchers defined personal control needs as needs related to a person’s ability to maintain autonomy in terms of the physical self (sexual function, evacuation, and ambulation) and the social self (disclosure about cancer and the ability to make plans and socialize). It also included wishes to return to “normal” and finding a “new normal.”