Healthcare Literacy and Its Impact on Cancer Care
A cancer diagnosis can be a shocking experience for patients. But when health literacy, or the ability to understand and navigate the healthcare system efficiently, is not there to support the patient’s understanding of a condition and what is involved in returning to good health, dealing with cancer can be even more frightening. And struggling with health literacy exacts more than an emotional toll—a systematic review of health literacy studies found that "patients with low [health] literacy were generally one and a half to three times more likely to experience a poor outcome."
Unfortunately, many adults in the United States don't have the knowledge and skills they need when embarking upon a journey involving cancer treatment. Only 12 percent of adults in the United States have what experts call “proficient health literacy." That means that only about 1 out of every 10 people possesses the appropriate education and ability to process complex health information, make informed health decisions, and participate in the management of their care.
An increasingly complex healthcare arena, continually generating new technologies and a wider array of treatment options, exacerbates the health literacy problem, Kelvin Koay, Penelope Schofield, and Michael Jefford observed in Importance of Health Literacy in Oncology.
“These changes create significant challenges for patients in making decisions about their health care," they wrote. “This may be especially important in the oncology setting due to the high disease burden, the availability of cancer-screening programs, the complexity of multimodal therapies, and the emphasis on cancer clinical trials."
How Poor Health Literacy Impacts Cancer Patients
Shared decision-making is a key element of cancer care today. But, it requires a certain degree of the patient’s understanding of the condition and treatment plan.
People living with cancer today face “multiple, complex, and individualized options on cancer treatment," as Koay and his co-authors put it. As a result, anyone challenged in health literacy may have a disadvantage. Research shows that:
- Many people with limited health literacy overestimate their chances of being "cured" of their cancer.
- They often don't understand the intent of the treatments they're receiving.
- They don't fully grasp the difference between curative therapies and palliative care.
“As a result of the misconceptions, patients may draw incorrect conclusions from the data provided to them about the chances of their cancer responding to treatment," wrote Koay and his co-authors. “This may lead to unnecessary interventions or undertreatment."
That's why physician awareness of the level of the patient’s health literacy can be critically important. If you're a member of an oncology care team, your efforts to help patients better understand their situation can improve their experience and may even contribute to a better outcome.
Helpful Communication Strategies
Oncology team members can employ several communication strategies to try to overcome health-literacy barriers:
Assessing the patient's health literacy at the beginning. Before launching into a complicated explanation of a patient's diagnosis or treatment options, it can be helpful to take some time to understand the individual’s level of health literacy. Considering cultural values and background will also help you understand what informs their perspective.
Determining your patient's language skills. If patients aren't completely fluent in the language you're using to communicate with them, much of the information you're providing may be missed. A professional medical interpreter can help overcome the language barrier. Using professional interpreters "increases patient satisfaction, improves adherence and outcomes, and reduces adverse events," Gregory Juckett and Kendra Unger wrote in a 2014 article for American Family Physician.
Using the teach-back method. Patients may not tell you when they don't understand something—or even understand enough to be aware they're missing pieces of the puzzle.The teach-back method helps assess how much patients actually understand, so you can address the issue before they leave the office. The method consists of explaining a point in plain language, then stopping and asking the patient to tell you what they think you just said, in their own words. Listen carefully to their answer, so you'll know how well they did or didn't understand—and you'll know how to proceed.
Repeating information. According to the Agency for Healthcare Research and Quality (AHRQ), patients immediately forget 40 to 80 percent of the information they receive during a doctor's office visit—and half of the rest is remembered incorrectly. You may need to provide and explain information multiple times to your patients to make sure they understand it.
Evaluating printed materials. If you provide written instructions or handouts with information, you may be inadvertently giving them reading material that's above their comprehension level. If a handout is written at a 12th grade reading level, and the patient—like many people—reads at only a 7th or 8th grade reading level, there's likely to be a major disconnect. Rewriting handouts in plain language without leaving out the critical information patients need can help ensure they grasp the information they receive.
To learn more about the teach-back method or other communications strategies, view AHRQ's Health Literacy Universal Precautions Toolkit.