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Many cancer patients don’t fully understand their condition. Here’s how to help

By Nick Paul Taylor

Clearly understanding their diagnosis and treatment plan is vital for cancer patients in order for them to have an optimal treatment experience. In fact, studies have linked patient education to reduced depression and side effects from cancer therapies. Yet new data shows there are critical gaps in cancer patients’ knowledge about their condition and treatment.

Results from 825 patients diagnosed with or treated for cancer who were surveyed on Phreesia’s PatientInsights platform as they checked in for their doctors’ appointments revealed the breadth of that knowledge gap: More than one-third (34%) of surveyed patients were unaware of how advanced their cancer was.

That’s a percentage that Justin Holko, Vice President and head of the Global Oncology/Hematology Commercial Business Unit at Regeneron, finds troubling. Shubh Goel, Vice President and U.S. franchise head for Immuno-oncology and Gastrointestinal Tumors at AstraZeneca, shares his concerns, calling the statistic “a challenge for our industry to do better.”

Other survey findings further reinforced the conclusion that too many cancer patients are in the dark about important aspects of their condition and treatment. More than one-third (34%) of survey respondents said they lacked a clear understanding of their cancer therapy before starting treatment, while 17% understood their treatment “somewhat,” and a further 17% had little to no understanding of their treatment.

Similarly, only 35% of patients said they had undergone genetic or biomarker testing for their cancer, and 24% were unsure whether or not they had received such testing. The remaining 41% of surveyed patients did not undergo genetic or biomarker testing, depriving them and their physicians of insights that could have informed their care.

Holko sees those findings as evidence of the need for medical, commercial and research and development teams to make sure that every patient, caregiver, nurse and doctor has the opportunity to learn about all of the options available to them. But providing that education, particularly to patients, requires thoughtfulness: When communicating with patients at vulnerable points in their cancer journey, how information is conveyed is just as important as the knowledge itself.

“It’s not just your delivery of the education and facts, but doing it in a way that is uncomplicated, easy to understand, not overwhelming and that makes people feel like they’re equipped with the tools they need to go talk to their doctor or better understand their condition,” Holko explains. “It has to be done in a very personal way.”

Cancer-therapy drugmakers also play an important role in helping patients understand their diagnosis and treatment pathways. “Because we develop and make these cancer treatments, we have the opportunity to be an ally and an educator,” Goel says, highlighting the need “to work hand-in-hand with advocacy partners to advance dialogue with patients and grow our education efforts.”

Additional survey results indicated avenues for activating patients and improving their understanding of their cancer and available therapies. A majority (69%) of surveyed patients said they had sought resources beyond their healthcare provider to learn more about their illness. Online searches (48%), general cancer websites (36%) and specific cancer websites (32%) were cited as the most widely accessed resources.

Meeting patients where they are can better address their knowledge gaps and ultimately improve their cancer treatment, Holko says, pointing to the need for market research that can shed more light on how different patients find and absorb cancer information.

“It really comes down to understanding who your patients are and using every channel available to you to reach the right patient at the right time in a very personalized way,” he says.

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