Patient Education Materials and Literacy

Running head: PATIENT EDUCATION MATERIALS AND LITERACY 1

Patient Education Materials and Literacy

Derrick Dougherty

National Louis University

PATIENT EDUCATION MATERIALS AND LITERACY 2

Abstract

Every year many lives are lost due to ineffective healthcare instructions. Most of the time

these deaths are unintentional and a complete accident. Healthcare providers are often depleted

of energy, time, and resources, which leads to an inadvertent lack of patient education. Often

times, patients are unable to read the instructions, understand the instructions, or do not want to

ask questions out of fear or shame. This is especially true in the emergency departments and end-

of-life directives. The emergency department is a place of constant chaos, and often patient

instruction falls through the cracks. Geriatric patients are often confused when they are presented

with end-of-life advance directives, which they sign because they are told to by family. Through

the research completed in this paper, it is shown that steps are being taken to improve patient

education materials, however, it appears to not be enough.


Patient Education Materials and Literacy

“Health literacy is defined as the degree to which individuals have the capacity to obtain,

process, and understand basic health information and services needed to make appropriate health

decisions.” (Mayer & Villaire, 2009) Many people often are not able to understand medical

terminology, and subsequently, patient education materials. Patient education material is written

by physicians to a level at which they believe enough information has been communicated to be

able to provide self-care. Patients often feel they understand their medical instructions, however,

when they need to perform self-care they are unable to understand the instructions. Often times

this inability to understand is not an overabundance of complex medical terminology, but a lack

of general education. This issue can be solved by revision of patient education materials. It can

also be solved by involving patients in what is necessary for them to care for themselves. One of

the easiest ways to solve the issue is by using a standardized reading level of patient education

materials, so that no person is ever left feeling scared about their care and what they need to do

to improve their health. A large amount of the population has a lower reading level than is

necessary to read patient instructions. Nielsen-Bohlman, Panzer, & Kindig (2004) even dispute

that advance reading skill will understanding, stating “Neither a high school education nor

advanced reading skills guarantee that a person will understand health information.” (as cited in

Mayer & Villaire, 2009) Even with the improvement of the reading level on medical material,

patient education materials continue to fall short of the national standards and the necessity of

understanding needed for proper self-care.

One of the main factors of medical education materials misunderstanding is lack of

education. According to Kirsch, Jungeblut, Jenkins, & Kolstad (2002), over 40 million adults are

functionally illiterate and another 50 million have insufficient reading skills. (as cited in Ryan et


al., 2014) 90 million people lack the proper reading skills that may be called upon to read

medical education materials. These people feel shame or embarrassment due to their lack of

reading ability, which causes them to not ask for assistance in understanding of the materials.

This lack of understanding can cause repeat hospital visits, further patient injury, and unknown

medical complications. This, in turn, creates higher hospital expenditures and a revolving pattern

of involvement with healthcare services. According to Ryan et al. (2014), healthcare systems

continue to develop and use educational materials that are not appropriate for many of the

patients and families that they serve. One of the materials Ryan et al. (2014) reviewed showed a

picture of a brain with much more detail than what the patient needed. When determining the

suitability of patient education materials, it must be approached as if the person has absolutely no

knowledge of the topic for which they are reading. Physicians write patient education materials,

and they are far above the necessity to assist the patients in proper self-care.

Tamura-Lis (2013) asserts, “one of the most promising and successful, evidence-based

methods of patient education is the Teach-Back Method.” She also states, “Educated patients are

able to manage their medications, fully participate in their treatments, and follow protocols to

achieve the goal of safe quality care.” This method asks the patient to “teach-back” what they

have been explained or what they need to know. Teach-back should be used whenever a patient

needs to be educated. (Tamura-Lis, 2013) The Teach-Back Method ensures that a patient

understands and is able to follow the instructions that have been explained to them. Utilization of

the method eliminates the majority of misunderstanding because if the patient doesn’t

understand, the information is explained again in a different way until understood. This method

is used in many different situations. When babies are taught new ideas, a parent has them repeat

back what was just taught to them. It is a way to call on the brain to instantly remember


something, and force it to put what was said into long-term memory rather than only in short-

term memory.

Agarwal et al. (2013) evaluates the quality of online patient education materials for

rehabilitation following neurological surgery. The main issue with online patient education

material is that it is often unreliable, or unqualified persons create the material. Often the online

material is above the majority of Americans reading level, which Vives, Young, & Sabharwal

(2009), state is between seventh and eighth grade. (as cited in Agarwal et al., 2013) Agarwal et

al. (2013) finds that rewriting online education materials to effectively communicate with the

general population would be beneficial. This, as mention before, would mean that the material

would need to be rewritten at an eighth grade level or below. Agarwal et al. (2013) found that the

websites of the National Institute of Neurological Disorders and Stroke, U.S. National Library of

Medicine, American Occupational Therapy Association, and the American Academy of

Orthopaedic Surgeons were written at levels that may be too complex for the average American,

thus warranting revisions and improvements. These websites are among some of the most

influential and trusted websites, however, they are written at a level about much of the American

reading level. When a person visits a reputable site to get information, but they are unable to

understand what they are reading, they look for other sources. This is usually when that person

resorts to the less reliable websites that provide easier to understand, but are often incorrect

information.

The development of patient education material is a difficult task, but once the material is

developed, it must be evaluated. There must be an education needs assessment performed prior

to developing patient education material. Ruffin (2010) evaluated phototherapy patient education

materials and found several shortcomings. She also discovered that there were not enough


brochures to mass distribute and the written material often as recommended 5th grade level. Once

new patient education material is developed, it is evaluated using a particular algorithm. Ruffin

(2010) pointed out that after redevelopment of patient education materials, only around 7%, had

difficulty understanding the new material. In Ruffin’s (2010) study, it was found that the new

educational materials met the needs of the patients. However, the evolution of patient education

materials must be in a state of constant change. The materials must constantly be reviewed for

proper effectiveness and understanding, as well as correlation with current medical innovations.

The lack of revision is often what causes issues with patient education materials, because more

has been learned about certain medical ailments. Further knowledge about an ailment means that

the patient education materials must be revised, however, they often are not. This harms the

patient and leads to return visits to a healthcare facility, when the knowledge to keep them at

home was there, but just not printed.

Additionally, McCarthy et al. (2012) finds that print instructions are not written at

appropriate reading level and emergency department (ED) patients frequently do not understand

their discharge instructions. The complications in the emergency room are two-fold. The ED

staff is often overworked and understaffed, while the patients are often experiencing the worst

day of their lives. These complications lead to lack of communication, lack of instructions, and

overlooked patient education. McCarthy et al. (2012) asserts that the reduction of reading level is

an important step; however, it is not enough. They go on to recommend the minimizing of text is

the best route. Simple language is often used to determine the development of new patient

education materials. However, McCarthy et al. (2012) found the difficulty using simple language

is that healthcare professionals find it hard to understand. This discovery means that there has to

be appropriate material that is understandable by the patients, as well as the healthcare providers.


McCarthy et al. (2012) also identified that visuals placed appropriately help explain the text and

stress important points. The use of visuals can be extremely helpful. This is because many people

are visual learners and find it easier to learn when looking at a picture. However, visuals can

often crowd a page and if not used properly, they can be distracting. Once implemented,

McCarthy et al. (2012) will use their documents as a foundation for comprehensive discharge

instructions. A study conducted by Alberti & Nannini (2013) evaluated patient comprehension of

discharge instructions from the ED or urgent care (UC). According to Alberti & Nannini (2013),

comprehension of discharge instructions is critical; this comprehension comes from the patient-

provider relationship. They continue by saying that simplification of material is paramount in

achieving comprehension.

Nurit, Bella, Gila, & Revital (2009) directly evaluated patient knowledge regarding

medication following a nursing intervention project on patient medication education. During the

study, 84-93% of patients received explanation of medication. Medication education is a very

important aspect of patient education, which is often overlooked. Most healthcare practitioners

don’t provide a complete explanation of medication. This is due to the misunderstanding that the

patient needs the medication, so they will take it based off of the ailment they are experiencing

without much further explanation. Medication education should include many aspects of the

medication such as: side effects, drug interactions, and frequency and dosing. Often times as

stated in Nurit et al. (2009), under-use of the tool (questionnaire) by nurses was caused by lack

of time, workload, and patient education not being their top priority. The study also found there

needs to be more emphasis on the nurse’s role as the medication educator. Nurses often work

long hours and have a very heavy workload. This is where the issues appear due to the workload

and time management.


Cognitive load theory holds that an individual’s capacity to process information is finite.

(Pusic et al., 2014) This theory essentially means that there is only a certain amount of

information that a person can process before the remaining information coming in is no longer

processed appropriately. Pusic et al. (2014) states that healthcare providers will occasionally

provide verbal information when it should be provided in written form. This is often caused by

the lack of time. It is easier to rapidly explain an instruction, than to print off and then explain

the handout to a patient. The patient should control the flow rate of new information. (Pusic et

al., 2014) In the fast paced medical environment, clinicians, unfortunately, rush through

information sharing sessions with patients. This helps the clinician with moving to the next

patient, however, the patient is the one that is hurt by the rapid instruction session. Often times,

this causes the patients to return to the clinician or change clinicians because they don’t feel they

had adequate care provided to them by someone that honestly wants to help them be better.

Decreasing extraneous cognitive load enables the learner to use their limited resources to focus

the intrinsic load of the concepts to be learned. (Pusic et al., 2014) Removing unnecessary

information from patient education materials allows for better learning by the patient. Presenting

information using words and graphics will increase the uptake of information. (Pusic et al., 2014)

The use of multiple approaches to patient education allows for a larger possibility of patient

understanding. Verbal, written, and visual educational material by themselves are great in the

facilitation of patient education. However, all these methods used in a single interaction with a

patient allows for a more thorough understanding of instructions. This method can add to patient

contact time, however, keeping patients from returning to a clinician for the same ailment

reduces costs and time in the long run. Presentation of the words and graphics simultaneously

will make a dual pathway connection, which will allow for a connection between the two. (Pusic


et al., 2014) Using visual methods to present visual concepts will aid in explanation and will

result in increased patient understanding. (Pusic et al., 2014) Using visual aids to show concepts,

which are more difficult to grasps just by explanation alone, are a good way to help patients to

grasp the educational materials. The way that graphics and text are combined maximizes the

effectiveness of patient education. (Pusic et al., 2014) This means patients will get the best

available instruction. These are extremely effective ways to improve patient education. They also

reach patients who are below the recommended reading level. At the end of the day, the main

objective of patient education material is to ensure that a patient will be able to care for

themselves, and not have to return to the ED for further treatment due to lack of proper aftercare

or discharge instructions.

Ache & Wallace (2009) began evaluating the readability of end-of-life materials. This is

a very serious time in a person’s life. The last thing a patient wants to have to stress about is the

ability to read the material that determines their final moments. Ache & Wallace (2009) found

that every end-of-life patient education material was above recommended 6th grade reading level.

Furthermore, Ache & Wallace (2009) found that approximately one-third were written at a

college level. The majority of people facing an end-of-life situation at this point in time do not

have college degrees. The people facing this situation are children of depression-era parents and

most have been hard working blue-collar people that have no further education than high school,

if they even completed that. End-of-life patient education materials can potentially offer a wealth

of knowledge to assist patients and their loved ones in making these decisions. (Ache & Wallace,

2009) However, if the patients and loved ones are unable to understand the materials presented,

they often make decisions without full knowledge of the ramifications. This often leads to fear

and misunderstanding when a person is facing an actual end-of-life situation.


End-of-life situations are one of the most difficult situations a person will face. Preparing

an advance directive (AD) makes a person face that fear way before the end of their life. An

advance directive instructs what is to be done when a patient is no longer able to make decisions,

due to medical or mental ailments that render them unable to make the decisions. Waite et al.

(2013) examined the effect of literacy and race to the amount of advance directive. It was found

that participants with low literacy were less likely to have an AD. (Waite et al., 2013) Often

times, it is found that people with less education will not have an AD. They don’t have the funds

to hire an attorney to draft one, they aren’t able to understand how to make one, and they don’t

have the knowledge to understand that one is needed. People with low literacy levels lack the

necessary education to grasp the necessity of an AD. This leads to confusion when families are

forced to make end-of-life decisions. Families do not want to make that decision, but are forced

into it due to the lack of an AD. As Americans face increasingly complex advance care planning

decisions, educating people about their options and documenting their preferences has become

an important way to protect their wishes and rights. (Waite et al., 2013) The study points out that

patient regularly discuss end-of-life wishes, however, they don’t document their wishes. When a

person doesn’t have documentation of their end-of-life wishes, every possible medical

intervention is attempted to save that persons life. Healthcare providers are there to save lives,

not let them die. However, in the event that a person wishes to be allowed to die when the time

has arrived to die, they must put that wish into documentation. That documentation can be filled

out with a physician, but patients tend to procrastinate this process because of fear or the thought

that that won’t happen for many years.

Patient education materials are extremely important to the furthering of patient health.

Literacy of those materials is extremely important. Lack of understanding of patient education


materials often causes return visits to healthcare providers, further injury, and a decrease in

patient health. Patient education material is improving; however, it still has a long way to go.

These revisions of patient education material include: adjusting reading level to national

standards, using visuals, and connecting written words with verbal explanations. A person gets a

multitude of information at a physician’s office, and by the time they arrive home, they have

forgotten a lot of it. Placing written, understandable instructions in their hand, that they can read

when they get home, will help them to recall the information. This understanding is extremely

important when a patient is discussing and determining their end-of-life wishes. At some point in

life, patients should create an advance directive that explains what to do if they are unable to

make decisions for themselves. This type of decision should be made with the help of extremely

understandable patient education materials. This allows a patient to make an informed and safe

decision that best fits their wishes. Patient education materials still have a long way to go, but the

materials are on the right path to help and increase the overall health of patients.


References

Ache, K. A., & Wallace, L. S. (2009). Are end-of-life patient education materials readable?

Palliative Medicine, 23(6), 545-548.

Agarwal, N., Sarris, C., Hansberry, D. R., Lin, M. J., Barrese, J. C., & Prestigiacomo, C. J.

(2013). Quality of patient education materials for rehabilitation after neurological

surgery. Neurorehabilitation, 32(4), 817-821.

Alberti, T. L., & Nannini, A. (2013). Patient comprehension of discharge instructions from the

emergency department: A literature review. Journal of the American Association of

Nurse Practitioners, 25(4), 186-194.

Mayer, G., & Villaire, M. (2009). Enhancing Written Communications to Address Health

Literacy. Online Journal of Issues in Nursing, 14(3), 4.

McCarthy, D. M., Engel, K. G., Buckley, B. A., Forth, V. E., Schmidt, M. J., Adams, J. G., &

Baker, D. W. (2012). Emergency Department Discharge Instructions: Lessons Learned

through Developing New Patient Education Materials. Emergency Medicine

International, 1-7.

Nurit, P., Bella, B., Gila, E., & Revital, Z. (2009). Evaluation of a nursing intervention project to

promote patient medication education. Journal of Clinical Nursing, 18(17), 2530-2536.

Pusic, M. V., Ching, K., Yin, H., & Kessler, D. (2014). Seven practical principles for improving

patient education: Evidence-based ideas from cognition science. Paediatrics & Child

Health (1205-7088), 19(3), 119-122.

Ruffin, F. (2010). Developing and Evaluating Effective Patient Education Material for Patients

Receiving Phototherapy Treatments. Dermatology Nursing, 53-65.


Ryan, L., Logsdon, M., McGill, S., Stikes, R., Senior, B., Helinger, B., & ... Davis, D. (2014).

Evaluation of Printed Health Education Materials for Use by Low-Education Families.

Journal Of Nursing Scholarship, 46(4), 218-228.

Tamura-Lis, W. (2013). Teach-Back for Quality Education And Patient Safety. Urologic

Nursing, 33(6), 267-298.

Waite, K. R., Federman, A. D., McCarthy, D. M., Sudore, R., Curtis, L. M., Baker, D. W., & ...

Paasche-Orlow, M. K. (2013). Literacy and Race as Risk Factors for Low Rates of

Advance Directives in Older Adults. Journal Of The American Geriatrics Society, 61(3),

403-406.