Survey Says: Support Is Lacking for Cancer’s Lingering Effects

Long-term side effects associated with cancer and its treatment are a burden for a substantial proportion of cancer survivors, according to follow-up results of the FiX study.

Cancer survivors continue to experience taxing symptoms such as fatigue and sexual problems years after diagnosis, and a number of these survivors are unhappy with the support they have received for these long-term issues, reported Martina Schmidt, PhD, of the German Cancer Research Center in Heidelberg, during the virtual European Society for Medical Oncology meeting.

In a follow-up survey, most of the 1,348 included survivors reported being rather satisfied or very satisfied with the medical care they received in treating their cancers, 7.9% said they were very dissatisfied or rather dissatisfied, and about one in seven (14%) reported being very or rather dissatisfied with the care and support they received for longer-term side effects or consequences of their disease or treatment.

“I’m a bit conflicted about saying only 7% of people were unhappy with their tumor care,” said discussant Dorothy Keefe, MBBS, MD, CEO of Cancer Australia. “It means 93% were happy, but it’s still a significant number of people. But 14% — twice as many — were unhappy with side effect care. This is disappointing, but not surprising, because the system does focus much more on treating cancer than side effects.”

She noted that as cancer survival increases, symptoms and side effects become a more prominent issue.

“Increasing survivorship will lead to more chronic burden in the community,” Keefe added. “And 14% of millions and millions of people, is still millions of people, so there is a big need that we have to address.”

This study was a follow-up to the FiX study, which assessed fatigue prevalence and severity in 2,508 cancer patients across 15 different entities 2 years after diagnosis through the Epidemiological Cancer Registry in Germany.

The follow-up survey was conducted between December 2020 and April 2021. It included a list of 36 potential long-term problems or late effects, and participants were asked how much these effects were a burden to them (no/little/moderate/significant/extreme burden). If they reported a burden, they were asked to rate the received support for this problem (good/moderate/poor).

This analysis included 1,874 disease-free survivors (mean age 65.8, 49% women) who completed the follow-up survey at a median of 4.2 years after diagnosis; after excluding patients who metastasized or relapsed, 1,348 patients remained.

A substantial percentage of cancer survivors reported that they continue to be burdened with a number of late effects more than 4 years after their diagnosis, noted Schmidt. About one-third of survivors reported extreme, significant, or moderate loss of physical performance, fatigue, or sexual problems in the last 6 months since the time they were surveyed, she added.

Survivors also reported being burdened by anxiety (28%), neuropathy (25.6%), memory problems (23%), problems with concentration/attention (21.9%), and impaired body image (14.7%).

Of these patients, many reported dissatisfaction with the support they received for these long-term effects, with the highest levels of dissatisfaction reported for impairment of body image, sexual problems, weight gain, problems with concentration/attention, fatigue, and neuropathy.

“None of this is earth-shatteringly surprising,” Keefe observed. “But it is important to measure it. We can’t fix what we can’t measure, or at least we can’t know whether we’ve fixed it or not, if we haven’t measured it.”

“There is an unmet need for improved care for these cancer survivors who continue to experience these long-term side effects,” Schmidt concluded. “There is potential for improvements, especially for issues that might be considered clinically less relevant or where no pharmacological or medical treatment is known.”

“We’re still not very good at managing fatigue or neuropathy, cognitive problems or sexual problems, or body image and physical fitness,” Keefe said. “These are issues for system planning, oncology training, counseling, and support.”