Cancer Survivors Face Ongoing Burden of Unmet Needs

Liam Davenport

January 12, 2015

Cancer survivors have a number of needs that persist up to 10 years after diagnosis and treatment and are not being adequately addressed, the results of a new analysis indicate.

The findings, from a American Cancer Society dataset, indicate that cancer survivors have physical, financial, educational, personal control, and other problems, with each patient experiencing an average of almost three unmet needs.

"Certainly previous research has identified that a lot of cancer survivors have unmet needs," explained lead author Mary Ann Burg, PhD, from the University of Central Florida in Orlando. However, this analysis involved "a really large sample of people who used their own words about what they were experiencing."

"Many of them were quite far out from their diagnosis and treatment, and we found that at least some unmet needs continued even up to 10 years post treatment. That was somewhat of a surprise," Dr Burg told Medscape Medical News.

"The other surprise, I think, was that so many men and so many minority survivors responded to an open-ended question, which gave us a sense that more men are experiencing problems after cancer treatment, especially prostate cancers survivors, than we had identified in the previous literature, and that more minority survivors are experiencing problems that have not been previously identified," she added.

The research was published online January 12 in Cancer.

Dr Burg explained the genesis of the research: "Kevin Stein at the American Cancer Society in Atlanta let me know that they had a dataset of questions they had collected from their 2010 survey of cancer survivors that had open-ended questions that had never been analyzed."

Dr Burg's team took on the task of examining 1514 responses from cancer patients who had survived for 2, 5 and 10 years who had responded to the following 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 mean age of the respondents was 62.5 years, 34.6% were men, 43.4% had breast cancer, 18.0% were nonwhite, and 40.0% were 2-year cancer survivors.

The most frequent unmet need, reported by 38.2% of respondents, was physical. This was followed by financial problems (20.3%), education and information needs (19.5%), and personal control problems (16.4%), which include needs related to an individual's ability to maintain autonomy in terms of the physical self (sexual function, evacuation, and ambulation) and the social self (ability to make plans and socialize).

Other unmet needs identified were system-of-care problems, resource needs, emotional and mental health problems, social support needs, and societal concerns related to the patients' cancer experiences.

On average, individual patients had 2.88 unmet needs, with breast cancer survivors identifying a mean of 2.96 unmet needs. Skin cancer survivors reported the fewest unmet needs, at an average of 2.63.

Men were significantly more likely than women to report physical and personal controls needs.

In contrast, women were significantly more likely to report financial, system-of-care, and resource needs, emotional/mental health problems, social support needs, and communication problems.

Prostate cancer survivors and responders older than 65 years were particularly likely to report physical and personal control needs.

Younger survivors were more likely than older survivors to report financial, emotional/mental health, and communication problems. Black and Hispanic respondents reported more cancer-related financial problems than other groups.

Dr Burg suggested that, to a certain extent, the problem of unmet needs among cancer survivors is being recognized by the oncology community. There has been "a changing mindset over the last 10 to 15 years. People are living longer because cancer treatment is more effective than it was; we have more people to experience post-treatment needs over a longer period of time," she explained.

"I think certainly that is something that the oncology community has been aware of, and to some degree the healthcare industry is paying some attention." She pointed out that "there are, for instance, now some specialty survivor clinics. They are few and far between, but there are some."

Nevertheless, there remains a long way to go before the unmet needs are adequately addressed. "I think that there's got to be a lot more work in terms of following up on the research of what really happens to a cancer survivor over the period of time post-treatment, identifying who is having needs that aren't being met, and finding the ways that might help them cope with those needs," Dr Burg said.

"I think also a big part of the problem that cancer survivors have is that many of the things that happen to them post cancer are unexpected," she added.

"For instance, men who had prostate cancer might have been told by the surgeon or the radiologist that they might have some problems with incontinence and impotence, but they will probably resolve," she continued. "That's a fairly typical thing that is told and, to some degree, its true, but for many men, it's not true. They have continuing, permanent problems with this issue."

"When it's unexpected, I think it has more of an impact emotionally — I am speculating on that — than it does when you have some expectation of it," Dr Burg concluded.

"I think part of what has to be done is that we need to be able to communicate these possibilities to patients in a more appropriate way and across the board with patients so that they are somewhat prepared," she explained.

The American Cancer Society Studies of Cancer Survivors were funded as an intramural program of research conducted by the American Cancer Society Behavioral Research Center. Dr Burg has disclosed no relevant financial relationships.

Cancer. Published online January 12, 2015. Abstract

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