It’s National Kidney Month: Do You Know Where Your Patient Reading Levels Are?

An estimated 51.8% of noninstitutionalized American civilians have at least one of ten selected chronic conditions, including kidney disease/failure, and 27.8% have two or more.¹ Chronic diseases require self-management—which must be informed by education patients can understand. What reading level can we assume they may comprehend? Here’s one clue; a 2023 survey² finds that:

• 17 states – 34% – have compulsory education laws through age 16; high school sophomore (AL, AZ, DE, FL, GA, HI, IA, ID, MO, MS, MT, NJ, NY, NC, ND, VT, WY)

• 10 states – 20% – have compulsory education laws through age 17; high school junior (AL, AR, CO, IL, ME, MN, NE, SC, TN, WV)

• 23 states – 46% – have compulsory education laws through age 18; high school graduation (CA, CT, IN, KS, KY, LA, MD, MI, NH, NM, NV, OH, OK, OR, PA, RI, SD, TX, UT, VA, WA, DC, WI)

So, we can safely assume that most U.S. patients can read at a 10^th grade reading level, right? Wrong. First, education experts recommend dialing back 3-5 years from last year of schooling completed to a comfortable reading level. So, someone with a 10^th grade education would be comfortable with materials written at a 5^th-7^th grade reading level. Health literacy is an issue for an estimated 88% of Americans.³ Both the American Medical Association and the National Institutes of Health recommend a 6^th grade reading level for all patient education.⁴ Second, other factors—predominantly fear—interfere with patient ability to read at their normal level.

Medical Trauma and Reading Level

Imagine that you are in your doctor’s office getting a diagnosis that comes as a shock to you—whether or not you expected it. What do you hear? What do you recall? What do you do? Let’s take a brief field trip into the world of medical trauma and its impact on the human brain.

While we may conflate healthcare with healing, “Medical traumas are psychological traumas that result from medical diagnosis and/or medical intervention. Threat of serious injury or threat to life due to illness is now encompassed within the DSM definition of psychological trauma.”⁵ In severe cases, medical trauma can lead to post-traumatic stress disorder (PTSD), and the author notes that “the sensitivity of a professional’s communication plays a central role in how people experience traumatic medical events and how they cope with the decontextualization and disempowerment of being patients.”³

Trauma and PTSD were linked to dialysis in a 2007 study of 144 in-center HD patients that found HD-related PTSD in 10.4% of participants, and at least one traumatic event in 77.8%.⁶ Women exhibited more helplessness, fear, and horror than men, and strong associations were found between PTSD symptoms, mental health, and especially anxiety.

The stress response in humans leads to a two-pronged cascade of hormones and physiological changes.⁷ Briefly, here’s what happens:

1. The autonomic nervous system (ANS) activates within seconds of trauma. Catecholamines, like noradrenaline, are released to prepare for fight-or-flight.

2. The hypothalamus-pituitary-adrenal axis activates more slowly and releases corticosteroids, like cortisol.

These hormones interfere with attention, working (short-term) memory, and long-term memory (retrieval).⁷ In effect, when stress hormones circulate, we humans remember the trauma—and we can fight, flee, or freeze—but we can’t learn. And, the only way past fear is through HOPE.^{8, 9} THIS is what we need to always remember when we try to educate kidney patients.

A couple of weeks ago, a friend invited my husband and me to take a 4-hour welding class. The instructor spent a couple of hours on safety and a ton of complex welding facts that meant nothing to us beginners. Regardless of education level, I believe we each need a cognitive framework (like a mental file cabinet or a skeleton) to help store and retrieve what we learn about something new.

Patient Education Reading Levels in the Real World

In preparation to submit a journal article on a study, I found 75 papers on tested reading levels of patient education across kidney disease, trauma surgery, cancer, wound care, heart failure, and more. Virtually none found patient education materials written at the 6^th grade reading level. When I analyze materials, I find the same thing. Typically there are wild variations from paragraph to paragraph.

Even government materials don’t manage to hit the 6^th grade target. Here’s a clip from one I analyzed:

MEI Offer During March, 2025 for National Kidney Month

We are honoring Kidney Month this year by offering to assess your patient education materials—if you are in the first 20 respondents. Email one piece to kmappes@mei.org, and we will review it for use of medical terms, assumed knowledge, content sequencing, and emotional awareness. If the reading level is not 6^th grade, we’ll rewrite 1-2 pages so you can see the difference. We can also teach your team how to write at a 6^th grade level. Our aim is to offer patients HOPE and help them to improve their own health outcomes.