Patient Education

July 2006

Chapter Contents

Background

Subjective

Objective

Assessment/Plan

Background

It has long been acknowledged that informed and empowered patients are better able to achieve healthy outcomes due to improved communication and development of trust with their care providers. HIV patient education provides patients with knowledge about HIV infection and tools to enable them to participate more actively in decisions regarding their medical care. Given the complexity and the rapid evolution of HIV information, patients should be given ample and multiple opportunities to receive this information and to learn of updates in our understanding of HIV care. Similarly, the clinical management of HIV patients should include educating the patient on the various aspects of living with HIV infection. This chapter will review the areas that should be addressed in patient education and discuss some strategies for integrating patient education into HIV care.

S: Subjective

A newly diagnosed patient presents to clinic after being referred from a testing center in the community. He received his positive HIV results more than a year ago, but it took him this long to seek care. He wasn't ready to hear that he was "going to die." Now, he is ready to consider facing his "terminal" illness. He received some information about HIV infection at the testing center, but that was several months ago.

O: Objective

See Initial History , Initial Physical Examination , and Initial and Interim Laboratory and Other Tests chapters.

A: Assessment/Plan

This patient will need extensive information and education about HIV infection in general, his individual health status and prognosis, and the support and care systems available to him. Below are some suggestions about specific areas to review with a new patient.

What Should Be Included in Patient Education?

Patient education should cover the following topics:

• What is HIV?
• How HIV is transmitted
• Prognosis/progression of HIV
• Interpretation of lab results
• Treatment information
  • Indications for treatment, goals of treatment
  • General information regarding the benefits of treatment
  • General information regarding potential side effects of treatment
  • Access to medication
  • Insurance information
• Treatment options
• Prevention for positives
• Support services and support groups available to the patient

Who Should Provide Patient Education?

In most clinics, various personnel may take on the responsibilities of providing health education to patients. They may include primary care providers, nurses, social workers, case managers, and pharmacists. Some clinics have designated health educators whose role is to provide this type of support for patients. Even when a formal health educator is available, a collaborative, multidisciplinary approach to patient education serves both patients and providers optimally. However, it is important to ensure that patient education messages are coordinated and that patients are receiving consistent information.

Patient education must be provided in a language and at a literacy level appropriate for the patient. Patient education should be conducted in the patient's primary language, if possible; otherwise, skilled medical interpreters should be involved.

How Should Patient Education Be Provided?

Rarely are patients able to absorb all of the necessary information in a single session. Attention and comprehension levels are optimal during the first 15-20 minutes of a visit, after which an individual's ability to absorb and retain information declines. Therefore, clinics should consider strategies to integrate these 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 also important to keep the medical information specific to the patient. Although there are some areas of education that should be considered for all patients (see above), patients should not be required to have a high level of understanding in each area. Patients should be given the opportunity to learn as much about an area as they would like and to retain the volume of information necessary to keep them healthy and safe. For example, in the area of "What is HIV?" there may be some patients who want to know details about the basic science and immunologic impact of HIV. With this information, these patients might then want to take the lead in making treatment and care decisions for themselves, in consultation with their care providers. Other patients, however, would feel overwhelmed by this volume 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 their own treatment decisions.

There are a number of Web sites that provide HIV information for patients (see Web-Based Resources chapter). Many patients may prefer this form of self-education. Encourage patients to bring any information they discover to clinic 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. In addition, patients may learn of novel tools and information sources that could be useful to others.

The following are some useful suggestions that providers can convey to their patients:

• Define your goals for each visit; please let your provider know your concerns and what you hope to learn in the course of the visit.
• Write down questions and concerns as they arise, and take that list with you to your appointments.
• Meet all the members of your care team and learn their areas of expertise and what they might be able to offer you.
• Ask about support groups and other peer groups that might be able to provide support/education.
• Review brochures and/or Web sites that provide additional information.
• Ask supportive friends or family members to accompany you to clinic visits. They may be able to obtain information that is helpful for their role in supporting your health or reminding you of information discussed at visits.