Nurse, What Did the Doctor Say?

As providers, we spend time in hospitals, clinics and offices attempting to educate our patients on prevention and treatment of disease. But how many times have we heard that, after the patient walked out of exam room, he or she stated to the nurse, "I don't understand what the doctor just said to me about my health. Can you tell me?" The patient probably heard what Charlie Brown hears when his teacher is speaking to him. "You should do this and you shouldn't do that, mwa mwa, blah, blah, wah, wah. Have a nice day." Total gibberish!

There are many reasons why this phenomenon occurs. Reasons such as anxiety, fear, cultural or generational issues, provider bias, poor communication skills (including language barriers), cultural insensitivity on the part of the provider and health literacy issues can all be contributors to this concern. So how do we help our patients?

Well, President Obama committed to three primary goals in developing the National HIV/AIDS Strategy:

1. Reducing the number of people who become infected with HIV.
2. Increasing access to care and optimizing health outcomes for people who become infected with HIV.
3. Reducing health disparities to address the problem of HIV.

There is still some specific information that patients, providers and the general population should know in implementing this plan. In this magnificent White House document there are strategies listed to decrease the "community viral load" by lowering new HIV infections through intensifying efforts to educate all Americans on the threat and prevention of HIV, especially in vulnerable populations. The federal government would like to see targeted efforts using a combination of effective, evidence-based approaches. I say wonderful! Great!

This document also includes an objective to expand prevention efforts among HIV-infected individuals. We know that it's not usually persons that have been diagnosed with HIV that increase the community viral load. The continually high community viral load has primarily been attributed to those persons who don't know that they are infected or have low self-perception of HIV risk.

Unfortunately, mainstream health information is sadly inaccessible for millions of Americans with low health literacy. Health literacy is defined by researchers at the National Center for the Study of Adult Learning and Literacy as "the ability to use written materials to function in health care settings and to maintain one's health and the skills needed to advocate for and request needed clarification." However, a shocking number of Americans, especially those of color, are unable to achieve these most fundamental of aims. According to the American Medical Association, low literacy limits the accessibility of 90 million Americans to disease screening and prevention activities. People with low literacy are approximately twice as likely to be hospitalized as those of high literacy, and low literacy has been identified as a barrier to participation in clinical trials.

The rate of HIV infection among African Americans and Latinos is disproportionately higher than for Caucasians in the U.S. Previous research suggests that a low level of health literacy is an underlying factor to explain racial disparities in the prevalence and incidence of HIV/AIDS. In addition, African Americans with low incomes and low literacy levels disproportionately suffer poor health outcomes from many preventable diseases.

Why is health literacy important in HIV care? Well, for HIV-infected individuals it can be extremely difficult to navigate the health care system. For example, there can be difficulty in taking and refilling prescriptions, scheduling a referral, understanding test results or lifestyle modification messages, completion of copious forms for care, and adherence to the antiretroviral regimen. Osborn et al. (2007) found that low health literacy had a negative impact in the relationship between race and HIV medication adherence.

Meanwhile, I have had many patients that couldn't read at a level necessary to function. How can you refill a prescription if you can't read it? How about those persons who don't understand how to complete their AIDS Drug Assistance Program or Medicaid Part D forms, let alone follow medical instructions from the doctor?

In terms of primary prevention, the messages we're sending to educate the community on the importance of HIV prevention must be not only culturally sensitive, but also tailored to the health literacy level of the masses. Evidence-based messages on multimedia (Internet, social media groups, written materials, provider-patient interaction) need to be designed to reach those at highest risk for infection.

What can you do? You know I like bulleted lists:

• Develop a shame-free environment in your office by offering assistance to anyone who is required to fill out a form. Have a separate, private space with a staff person available to assist with completion of the forms without judgment. Utilize return demonstrations on instructions to patients. Always summarize the visit with the patient. Give time for questions and answers.
• Know that patients are rarely able to absorb all of the necessary information in a single session. Attention and comprehension levels are optimal during the first 15 to 20 minutes of a visit, after which an individual's ability to absorb and retain information declines.
• Consider strategies to integrate brief patient education messages throughout the course of patient care and to engage patients in this process.
• Support groups, case managers and peer educators can be invaluable in this process of engagement. It is important to keep the medical information specific to the patient.
• Patients should be given the opportunity to learn as much or as little about an area as they would like, and should be encouraged to gain a working knowledge of the information that is necessary to keep them healthy and safe. Realize that other patients may feel overwhelmed with content of information and involvement and may be best engaged in participating in their care by knowing how HIV is transmitted, how to keep themselves healthy, and how to access more information if they want it.
• Some patients would prefer for their care providers to "just tell them what to do" rather than take the lead in making their own treatment decisions.
• Identify websites that provide HIV information for patients, such as TheBody.com (yes, I'm biased). Many patients may prefer this form of self-education.
• Encourage patients to convey any information they discover to their care providers for further discussion. Reminding patients that they can be teachers as well as students can be a useful strategy for engaging patients in this process.
• Encourage your patients to define their goals for each visit.
• If possible, have the patient write down questions and concerns as they arise, and take that list with them to appointments.
• Introduce the patient to all the members on their care team and give their areas of expertise. Give information about support groups and other peer groups that might be able to provide support/education.
• Give culturally sensitive information at a low literacy level until you know the literacy level of the patient.
• Encourage patients to ask supportive friends or family members to accompany them to clinic visits. They may be able to obtain information that is helpful for their role in supporting your patients' health or reminding them of information discussed at visits.

In summary, low health literacy has a negative impact on HIV-infected individuals of color, making it difficult to adhere to HIV treatment and management. More research is needed for the development of culturally sensitive, evidence-based messages for primary and secondary prevention through multiple social media, as well as improved one-on-one interactions.

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