Scaling symptoms,self-efficacy for HIV

Goal is for tool to assist with patient care

As HIV clinicians in Cleveland, OH, were testing a symptom management intervention, they found there weren't any good scales available.

So they worked with the existing Chronic Disease Self-Efficacy Scale developed by Kate Lorig, RN, DrPH, , and adapted it to fit an HIV population. The new, nine-question tool is a symptom management self-efficacy scale for people living with HIV/AIDS.1

"We worked with Kate and figured out how to adapt her six-item scale to one that's important in the HIV context," says Allison R. Webel, RN, PhD, a clinical research scholar at the Frances Payne Bolton School of Nursing, Case Western Reserve University, in Cleveland. Webel wrote an oral abstract about the HIV/AIDS symptom management self-efficacy scale that was presented at the 22nd Annual Conference of the Association of Nurses in AIDS Care, held Nov. 20-22, 2009, in Jacksonville, FL.

The purpose of the scale is to assist clinicians when they are developing individualized treatment plans for HIV patients, Webel says.

"You can assess where the patient is weakest in symptom management self-efficacy," she says.

"If they don't believe they can see a doctor when they have changes in their symptoms, or if they have difficulty managing certain symptoms, then we can work with them to develop strategies," Webel adds.

For instance, clinicians can identify weaknesses in patients' treatment, help patients change their medications to reduce certain symptoms, or provide individualized counseling, Webel says.

"It's most helpful to have a team approach, including a social worker, a case manager, or substance abuse counselor, because a doctor can't address all of these issues," she adds.

"We looked at different dimensions for the scale in our focus groups," Webel says. "We asked how confident they are that they can do something, and we asked about traditional medications and whether they do things other than take medications to manage their symptoms."

The new tool asks HIV patients about their confidence in completing health care tasks and how much fatigue, pain, or discomfort they are experiencing, Webel says.

"Then we ask about emotional distress," she adds. "Our scale was only tested in women thus far, but it's being tested in men now in a larger, 21-site trial."

An example of how the HIV tool was adapted from Lorig's chronic disease scale is in the following question about fatigue: Lorig's scale asks, "How confident are you that you can keep the fatigue caused by your chronic disease from interfering with the things you want to do?"

In the HIV scale, the question is, "How confident are you that you can keep the fatigue caused by your HIV from interfering with the things you want to do?"

Another change was this additional question: "We added, 'How confident do you feel that you can develop a treatment plan to manage your HIV-related symptoms with your doctor?'" Webel says.

Experts reviewed the scale to make sure it was appropriate for the HIV population.

"Then we did psychometric testing to see how valid the scale was, and we found it was valid," Webel says. "We tested it in 89 HIV-positive women over four time periods."

Each woman filled out the survey four times, she adds.

The scale also proved to be reliable in testing what it was designed to test.

"When the women took it four weeks later, it was very stable," Webel says.

The women on whom the tool was tested had an overall low education level with 80% having a high school education or less, so the tool was designed for an eighth-grade reading level.

"The scale can be administered verbally, or they can take it with pen and paper, and we did both depending on participants' reading level," Webel says. "It probably takes five minutes for women to complete."

The scoring is on a scale from one to 10, and HIV patients are instructed to circle or indicate the level at which they're confident with the statement.

In Webel's long experience with HIV-infected patients, including some years working in an intervention program in San Francisco, the biggest gap in self-efficacy involves medication adherence, Webel notes.

"We had really poor adherence rates with these very complicated regimens," she says. "If I'd had the scale then I could have assessed different ways of tying in adherence to their symptoms."

The key is to help patients understand how their bodies are different with the disease and seeing that they can do something with the knowledge of why they need to take their medications, Webel explains.

The self-efficacy scale assists with this by focusing on symptom monitoring, collaboration with providers, and developing a treatment plan, she says.

"The literature shows that if you can have patient buy-in to the treatment plan then they're more likely to follow through," Webel says. "When clinicians know how to individualize the different factors, including a patient's life situation that might include children, etc., then that promotes patient buy-in and patient adherence."

What the scale identifies is the situation where a patient's personal needs and medication needs are out of alignment.

"It really came through with our pilot work that a lot of times women felt like they were being ignored by their providers when they complained about side effects," Webel says. "They were told these medications would help their viral loads, and while that's true, the medicines might not have been the best regimen for their life situations."


  1. Webel AR, Okonsky J. Symptom management self-efficacy scale for people living with HIV/AIDS: a psychometric evaluation. Oral abstract presented at the Association of Nurses in AIDS Care's 22nd Annual Conference, held Nov. 20-22, 2009, in Jacksonville, FL.