So much of patient education for chronic disease focuses on helping people learn about their diagnosis and how to manage it. Yet, while reviewing some of the recent literature, I was struck by the number of conditions that impact learning and cognition for adults. Examples include but are not limited to: schizophrenia, multiple sclerosis, heart disease, Alzheimer’s disease and related dementias, fibromyalgia, depression, bipolar disorder, Parkinson’s disease, HIV/AIDS, cancer, rheumatoid arthritis, developmental disabilities, epilepsy, ADHD, reading/learning disorders, autism, and Asperger’s syndrome. In some cases, treatment can also impact cognition and processing of information. In a recent white paper from the Center for Disease Control and Prevention and the National Center on Birth Defects and Developmental Disabilities Health Surveillance Work Group, adults with cognitive symptoms were described as “one of our most vulnerable populations in terms of health disparity and poor health outcomes.” This makes me wonder whether traditional educational design approaches are meeting the needs of adults with cognitive symptoms.
Cognitive symptoms and health literacy
National health literacy guidelines recommend that patient education materials should be written at or below a 6th-grade reading level. And studies have shown that more than 50% of Americans read at or below an 8th-grade level. In 2008, HealthEd audited 152 patient education materials. We found that the materials in 3 disease states were written at the following average reading levels: ADHD (12th grade), multiple sclerosis (10th grade), and schizophrenia (12th grade). This is concerning given the prevalence of cognitive symptoms in these populations and the fact that cognitive symptoms are not always apparent to educators and healthcare professionals.
Working towards solutions
In addition to reducing reading level, I wonder if we can learn from the universal design concepts that have been developed, employed, and tested in our school systems and special education classrooms. Below are a few design principles from the
- Provide multiple means of presenting information through vision, hearing, and touch. This is a powerful design component that allows patients to process content in different ways based on their learning style and condition
- Provide opportunities for the user to adjust the display of information (eg, size of text/images, contrast between background and text, color used for emphasis, speed or timing of information or video, and layout of visual elements)
- Aid comprehension by highlighting key information and/or pacing its release
- Provide options that support memory and retention (eg, checklists, reminders, prompts for pneumonic strategies, space for taking notes)
- Utilize navigation and interactive tools to provide more options for physical response to information
- Prompt, model, and guide the user in developing his or her own goals and learning objectives
- Embed prompts or coaches that help the user to: identify the steps to meeting his or her objectives, move through those steps, and recognize progress over time
- Maintain engagement by including prompts/tools that encourage participation, provide choice, evaluate relevance, and reduce distractions
Please note that I have paraphrased due to the robust nature of NCUDL’s design principles. You can click on the following link to access the full guidelines: https://www.udlcenter.org/aboutudl/udlguidelines. Additional research-based guidelines for universal design from the US Department of Health and Human Services can be found at https://usability.gov/guidelines/index.html.
Although these principles apply mostly to digital design, many could also be applied or modified for print materials.
I will close with a quote from Ron Wolk, founder of Education Week, that offers a refreshing look at educational design. Ron states, "We will make real progress only when we realize that our problem in education is not one of performance but one of design." I love this quote because it removes the blame (and sometimes shame) for patients with cognitive symptoms and provides a great challenge for educators.
It would be great to learn more from your experiences. Could you share a time when you have used any of the design principles mentioned above (or others) to develop or modify educational materials for an adult with cognitive symptoms? Could you share any of your challenges or success stories?
Christopher G. Kelly, M.Ed.
Director, Health Education