New tool measures potential for adherence
Tool is part of multidisciplinary approach
A team of HIV clinicians and medical professionals at Weill Cornell Medical Center at New York Presbyterian Hospital in New York City have developed an assessment tool that is used to identify a new HIV patient’s potential for adherence.
The tool, consisting of 20 questions, was designed to assess the psychosocial factors that could influence a patient’s adherence to antiretroviral therapy, says Chuck Finlon, CSW, senior social worker in the Center for Special Studies at Weill Cornell.
"As adherence became an issue and it became clear that 95% adherence was what was needed, we formed a multidisciplinary adherence committee about four years ago," he says. "We reviewed literature and looked at why patients were failing — what factors got in the way of their ability to take meds regularly."
At first, the clinic’s nurses, who were trained in dealing with HIV patients, began to work with patients who were medication-naïve or who were failing or changing regimens, Finlon explains.
Then the clinic started a four-module, four-week HIV treatment education course, taught by nurses, for the new HIV patient or for those who were failing their regimen, he adds.
Patients are given movie tickets as an incentive after they’ve completed the course, Finlon says.
The latest adherence strategy was to develop an assessment tool that could be used to screen patients before they are enrolled in the education course, he says. (See sample of assessment tool, below.)
| Weill Cornell Assessment Sample Questions
The adherence assessment tool developed by a multidisciplinary team at Weill Cornell Medical Center at New York Presbyterian Hospital in New York City is used to help clinical staff better understand impediments to HIV patients’ antiretroviral drug adherence. Staff ask new HIV patients to answer the tool’s questions before they begin treatment, and the tool is used to help initiate a dialogue about how the patient will need to achieve 95% or greater adherence to the drug regimen. The tool has not been tested for validity or reliability. Questions: Does patient have any problems with the following?
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Does patient believe someone can be cured of HIV or AIDS?
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The multidisciplinary team, consisting of physicians, nurses, social workers, and others, designed the assessment tool after reviewing literature and interviewing the clinic’s staff about factors that appear to influence adherence, Finlon notes.
"For us, what works with the tool is it sparks questions and thoughts in the patient, and it lets other team members know what are the patient’s issues," he says. "It’s put in the patient’s chart and is there for everyone to look at; and it’s a way to get people to think about the bigger issue of adherence."
The tool is not scored or measured as part of a research project, so its questions often are open-ended with the goal of encouraging patients, nurses, social workers, and doctors to think about the complexity of adherence, Finlon notes.
If it appears a patient is not ready to adhere to an antiretroviral regimen based on the assessment results, then the patient still is sent through the HIV training course in hopes that by its end the person will be in a better position to start taking HIV medications, he says.
Also, social workers will use the patient’s answers to the tool as a starting point for discussing the aspects of a patient’s life that may affect adherence.
"The patient might say, No, I won’t take medication because I think it’s going to kill me, but I’ll say yes to get the doctor off my back,’" Finlon says.
The assessment tool will pick up on the patient’s attitude toward medication and provide social workers with an opportunity to explore and discuss these issues.
Another barrier to adherence is substance use, particularly if it’s a daily habit, he continues.
"If the patient doesn’t think it’s a problem then there’s nothing you can do to help him with the substance abuse problem," Finlon says. "But you can talk with patients about how they think the substance abuse might affect their ability to take medications regularly."
Also if the assessment leads staff to believe a patient will have a difficult time remembering to take medications, then nurses can pre-pour the pills in a weekly pill box and make follow-up phone calls on a daily basis for those who are at the highest risk of nonadherence, he notes.
Follow-up doctor visits are every four to six weeks, depending on the patient’s answers to the assessment tool, Finlon says.
"Whenever they meet with the doctor, they meet with a social worker, so it’s always a team appointment," he explains. "Depending on what issues are flagged as a problem, the social worker sits down and talks with them about it."
For example, the social worker might say, "Your housing situation is a problem, do you want to meet regularly until we can come up with a solution?" Finlon adds.
One of the more common problems is disclosing their HIV status to family members, he says.
"We talk about their fears and issues related to age-appropriate disclosure," Finlon says. "There are so many different kinds of disclosure, such as disclosing to a 3-year-old vs. a 10-year-old or an 18-year-old or to a partner."
Social workers will ask patients these questions:
- What are the problems keeping the person from giving out this information?
- What will happen if the patient gives the information to a parent, a child, a partner?
- Has the patient told anyone in the past, and what has his/her experience been?
- Has the patient had any good experiences with disclosure?
- How did the person told about the patient’s HIV status react?
"The problem with disclosure is it seems so impossible to an HIV patient," Finlon says. "They think, I’ve got this secret and if I tell anyone they’ll abandon me, so I won’t tell anyone.’"
Another common problem among the HIV patients seen at the New York City clinic involves housing, he adds.
"Someone will have to move from relative to relative," Finlon says. "We’re based at the hospital, and so we educate patients about programs out there and hook them up with a community-based organization, and maybe take them around to look for an apartment."
While New York has a lot of services for people with HIV, to obtain those services is difficult, so social workers and case managers watch for signs that housing might be an obstacle to adherence, such as if a patient suddenly stops showing up for appointments regularly, he adds.
Medication side effects also are a common obstacle to adherence.
"We educate patients about possible side effects without scaring them in advance," Finlon notes. "The nurse case managers will work very intensely with patients on this issue."
For example, Finlon once had a patient who was resistant to taking her medications and then developed a brain infection. Although the patient said she’d take her medications now and was more adherent, she also was nauseous for six weeks, he says.
"She’d call every day to say she was going to stop taking her medications because they were making her sick," Finlon recalls. "I’d give her time to talk, and sometimes the nurse would call her back about certain interventions."
The staff worked closely with the woman, having the physician change her drug regimen a little and educating her about the limited number of options available to her, he says.
"The doctor thought the nausea and vomiting would go away if she could hang with it a while, and the nurse would say, Try to eat this instead,’" Finlon says. "The patient got through this period and is fine on the meds now."
He attributes the staff’s success with the patient to their willingness to listen and empathize. "We’d say, It must be awful — I have no idea of what it’s like to be nauseous for six weeks in a row,’" Finlon notes.
"The literature tells us the medications work if people are able to take them," he adds. "But there are a lot of things that prevent people from taking every dose, and we need to learn what is keeping a patient from taking medications and what has changed in their lives."
A team of HIV clinicians and medical professionals at Weill Cornell Medical Center at New York Presbyterian Hospital in New York City have developed an assessment tool that is used to identify a new HIV patients potential for adherence.You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
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