Online patient info about pancreatic cancer practically requires a degree to understand

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A readability analysis of 50 websites discussing treatment modalities for pancreatic cancer—one of the deadliest cancers and thus one of the most anxiety-producing after diagnosis—has found that, overall, the information is likely too hard to understand for vast swaths of the population.

The analysis, published online May 4 in  JAMA Surgery, also found a significant dearth of accurate information on alternative therapy options.

Alessandra Storino, MD, of Harvard Medical School and colleagues measured accessibility by nine standardized readability tests and had an expert medico-surgical panel assess the accuracy of the information on offer.

Along with alternative therapies, they looked at online materials dealing with chemotherapy, clinical trials, radiation therapy and surgery.

They found that websites discussing surgery, which had a median readability level requiring 13.7 years of education, were easier to read than those discussing radiotherapy and clinical trials, both of which had a median readability level requiring 15.2 years of education.

Websites of nonprofit organizations (median readability level, 12.9) were easier to read than academic (14.8) and media (16.0) websites.

As for accuracy, among treatment modalities, alternative therapy websites exhibited the lowest accuracy scores—a median of 2, indicating 26 percent to 50 percent of the information is accurate.

(1 = less than 25 percent of the information was deemed accurate; 3 = 51 to 75 percent accuracy; 4 = 76 to 99 percent accuracy; and 5 = 100 percent accuracy.)

Government (5), nonprofit (4) and academic (4) sites were more accurate than privately owned (3.5) websites.

Media sites scored a median of 4, but with a lower interquartile range than nonprofit and academic sites.  

Perhaps unsurprisingly, websites with higher accuracy were more difficult to read than websites with lower accuracy.

In their discussion, Storino et al. note the AMA’s recommendation of a sixth-grade reading level for patient-oriented education materials targeting the general population.

(The National Library of Medicine  recommends aiming for seventh or eighth grade level.)

Pointing out that only 58 percent of the adult U.S. population has attained a grade 13 reading-comprehension level, they state that the material in their sample is likely to perplex not only vulnerable groups with low health literacy but also much of the general population.  

“In the absence of an Internet librarian, healthcare professionals should acknowledge that online information on aggressive diseases such as pancreatic cancer could be misleading and potentially harmful,” they conclude. “[T]hus, they should assume an active role in the evaluation and recommendation of online resources, selecting readable and accurate online resources for their patients, as an instrument to empower patients in the shared decision-making process.”