Patient Data Access News

Patients Call for Better Info, Education on Cancer Treatments

Seventy-four percent of cancer patients say they want more information and education on immunotherapy, but providers are falling short.


Source: Thinkstock

By Sara Heath

- Oncologists and other cancer clinicians need to offer more information and education regarding innovative cancer treatments to both patients and caregivers, helping to drive more informed decision-making, according to a recent survey from the Cancer Treatment Centers of America (CTCA).

The survey of 1,000 patients and 1,000 caregivers found that cancer providers are not discussing advanced genomics or immunotherapy options with their patients.

About two-thirds of patients and caregivers reported that they were not aware of the details or benefits of advanced genomics, a treatment option that allows providers to deliver individualized care. In all, 25 percent of patients reported that their oncologist had discussed advanced genomic testing with them, and 36 percent of caregivers said the same.

Information about immunotherapy, a treatment that teaches the body to fight against certain kinds of cancers, was also left wanting. While 74 percent of patients and 84 percent of providers expressed interest in learning more about the treatment method, only 32 percent and 51 percent said their providers had discussed immunotherapy, respectively.

According to leaders from Cancer Treatment Centers of America, providers need to be having these discussions with their patients more frequently in order to fulfill their duties as members of the cancer care team.

"Part of our role as a patient's clinical care team is to learn about their goals and educate them on the latest technological and treatment breakthroughs that may help them fight their disease," said Maurie Markman, MD, President of Medicine & Science at CTCA.

"As revolutionary advancements continue to be made in cancer treatment, we, as physicians, need to increase our level of engagement with patients to ensure they fully understand the best options for their care."

According to Markman, it is up to the providers to ensure that they provide patients and their caregivers with accurate information regarding their cancer care. When left without adequate information, patients often turn to external sources, such as the internet. However, this leaves room for misinformation or confusion, and providers must be responsible for ensuring their patients are knowledgeable of their illness and treatment.

"Patients and caregivers frequently don't know what questions to ask, especially after an initial diagnosis, and they typically default to the Internet to obtain additional information," Markman explained.  "Much of this is difficult for them to interpret, however, so an increasingly important part of our responsibility is to help them understand what they have seen or read and its possible relevance to their treatment options."

Following diagnosis, many patients are also seeking second opinions, with younger patients being more likely than older patients to do so. According to the survey, this is likely because patients ages 25-44 are more eager to learn more about advanced and developing treatment and diagnosis options.

Although patients are seeking second opinions, the survey shows that they typically stick with their original provider. Four out of five patients and caregivers are satisfied with their current level of care, and most seek a second consult simply to confirm their original diagnosis.

When a patient does change providers, it is most often because of changes in their health insurance. For 21 percent of patients, provider changes are due to a lack of confidence in their original clinician.

The survey also found that patients are interested in health IT to help drive their engagement. One in five patients reported being interested in mHealth and wearable technology to help track their vital signs, and four in ten caregivers said the same.

Between calls for more technological support and better education, patients appear to be wanting more out of their treatment. Although the survey found that patients are generally satisfied with their current experiences, these findings show that providers can look to alternative avenues to help drive better patient education and engagement.

As patients continue to assume the position as healthcare consumer, and the industry continues to reward valuable care experiences, it will be important for providers to understand these kinds of patient needs.


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