Awareness Survey Helps Quantify Patient Understanding of Health Terminology

With all this talk about health literacy (HL), do people even know what the term means? After the Health Literacy Roundtable in March 2015, a short questionnaire was administered to 22 patients and six staff members in an effort to determine what patients and staff know about HL. The patients and staff were first asked if they had heard the term “health literacy.” If they responded “yes,” they were asked to describe the term in their own words. If they responded that they had not heard the term, the following definition was provided: “Health literacy is the degree to which you can receive and understand basic health information and services to the point where you feel you can help make decisions about your health care and treatments.”

The six staff members interviewed included registered nurses and certified hemodialysis technicians. Although only one, a registered nurse, had heard the term “health literacy,” all of the staff interviewed had some understanding of the meaning.

Twenty-two patients were chosen as a convenience sample based on their availability and willingness to participate. All of the patients were undergoing dialysis in one of five facilities in California. Their ages ranged from 56 to 91; 14 of the participants were women, and eight were men. English was the primary language of all but two of the participants. Those two reported that English was their second language; both spoke English and self-reported a good understanding of English. Only three of the patient participants, all women, remembered hearing the term “health literacy.” Each could state the definition in her own words. Two other patients had not heard the term but demonstrated a general understanding of HL.

After providing the definition of HL to the patients, we asked for a yes-or-no response to the following statements:

  • I understood/understand enough to be able to answer questions about my disease and dialysis when friends and family ask questions.
  • I understood/understand enough to follow instructions for taking my medications.
  • I understood/understand that I have to come to dialysis at least three times per week for the rest of my life unless I can have a transplant.
  • I understood/understand the choices I have for dialysis treatment (peritoneal dialysis, hemodialysis, in-center, home).
  • I understood/understand that my blood work can show how I am doing on dialysis.
  • I received simple explanations about what I should eat and drink and am able to determine what changes I need to make in my diet.
  • I felt/feel overwhelmed by the information and words used to describe my disease and treatment.

Table 1 presents the results of this survey.

Table 1.

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Findings

The majority of participants admitted to being overwhelmed by the terminology used by dialysis staff and nephrologists. Several participants indicated that they were given too much information too soon after starting dialysis. One participant complained that she had difficulty understanding the education because it was provided by registered nurses who spoke English as a second language. One participant had been undergoing dialysis for more than 5 years but felt that the education should be reviewed periodically to maintain understanding. She did not remember receiving simple or adequate information when she started dialysis. Another felt that information about emergencies and disasters needed to be clearer. One participant, who is blind and had somewhat limited English, felt that she was totally on her own and that no accommodation was made for her limitations, which included limited usefulness of audio teaching. Although almost all patients felt they had adequate information to modify their diet as needed, a review of their clinical records and conversations with their nutritionists found that many had significant nutrition issues (e.g., hyperphosphatemia, hypoalbuminemia, excessive fluid weight gain). Participants who had been closely followed up during their earlier stages of chronic kidney disease and had been educated by a practitioner were less likely to be overwhelmed by the complexity of the information provided at the initiation of dialysis.

Conclusion

If patients are to be successfully engaged as partners in their care, simple, repetitive health information must be provided in small segments and tailored to the individual. Validating that the information is received and understood by the patient and family, by the use of methods such as “teach-back,” which is discussed elsewhere in this issue, is an integral part of this process.