Those in Remission from Bladder Cancer Report More Positive Experiences

Individuals in remission reported having a more positive experience with bladder cancer, partly because of good relationships with doctors and feeling their overall needs were met, compared to their counterparts with active cancer, according to results from Bladder Cancer In America 2018 survey.

In addition, respondents in remission were also more likely to have received a second opinion when they were initially diagnosed, and they also obtained assistance from their health care provider with navigating the financial aspects of treatment.

“Many of these differences were related to interactions with their health care (providers),” Sara Hayes, MPH, senior director of community development at Health Union, the company who conducted the survey, said in an interview with CURE.

“For example, people (in remission) report higher levels of satisfaction with their (health care providers’) communication regarding test results and treatment options; are more comfortable discussing all aspects of their care; and are more likely to feel their (health care provider) understands their cares and concerns when compared to people with active bladder cancer,” she added.

The survey included 401 respondents — both patients (332) and caregivers (69) impacted by bladder cancer – of which more than half reported they are currently in remission.

Remission vs Active Disease

Overall, individuals in remission were more likely than those with active disease to be satisfied with the care they received. However, this satisfaction extended beyond that fact that their treatment worked, but instead, it stemmed from the fact that respondents felt their health care providers actually understood their questions and concerns about having bladder cancer and delivered easy-to-understand test results.

In addition, those in remission reported higher levels of emotional and social well-being needs that were met, which could also potentially contribute to treatment satisfaction. In particular, respondents in remission were significantly more likely than those not in remission to feel close to and receive support from friends, enjoy the things they usually do for fun, be able to work and overall be content with their current quality of life.

When asked if they have trouble meeting the needs of their families, feel nervous or sad, worry about dying or their condition worsening or feel forced to spend time in bed, those in remission reported, “not at all.”

“In general, we know that emotional and social well-being are key factors in patients’ quality of life,” Hayes said. “In this study, patients in remission were more likely to report that their information needs have been met, they are satisfied with their communication with their (health care providers), and that they have support from friends and family. All of these factors combined can help to ease fears and worries, which we know play a large role in a person’s emotional well-being and overall quality of life.”

On the other hand, patients with active bladder cancer reported they were more likely to need, but not currently receive, help finding coping strategies and understanding medical care. In turn, these patients were more likely to use bladder cancer-specific websites, internet search and online videos to find the information they needed.

“These data highlight areas where communication breakdowns are occurring between patients and their (health care providers),” Hayes said. “While the majority of patients noted they are relatively satisfied with their treatment decisions, 7 percent of patients surveyed experience treatment regret. While this may seem like a small percentage, ideally no one should have to live with this type of regret. Effective communication and easy-to-understand information can help.”

She added that responses from the survey demonstrated a key piece of advice patients had to offer others facing a bladder cancer diagnosis. “(The survey) asked patients to share advice they would give to their newly diagnosed self if they could go back in time knowing what they know now. There was quite a broad range of responses, but over and over again we saw patients were very focused on advocating for themselves,” Hayes explained.

“From responses like “get a second opinion,” “do more research,” and “make sure to discuss treatment outcomes,” it seems patients would encourage themselves and others to make sure they’re getting all the right information.”