Study looks at care model to improve drug adherence

Retention care counselor is major feature

Researchers at Georgetown University in Washington, DC, have developed an extensive intervention aimed at improving HIV medical adherence among people most at risk of not taking their drugs or not showing up for medical appointments.

While the research still is under way, a pilot study upon which the intervention is based had positive outcomes, including fewer primary care visits, fewer nonlife-threatening emergency department (ED) visits, and fewer unplanned hospitalizations, says Michael Relf, PhD, RN, ACRN, chair of the department of professional nursing at Georgetown University’s School of Nursing and Health Studies.

The pilot intervention lasted 18 months, and the larger study will divide patients between six-month and a 12-month interventions, using the same strategy and education as the pilot project.

In the first phase of the study, investigators retrospectively studied a six-month window of new patients to the clinic and identified a profile of those who were regular users, those who were sporadic users, and those who were nonusers, including people who were no-shows to appointments, Relf explains.

"A nonengager is a person who voluntarily comes to the clinic to enroll in care and completes the intake appointment with social services, completes the phlebotomy appointment, and participates in an intake history and physical and then never comes back," he says.

Providers, staff, and nurses were asked which factors they believed influenced retention of care, and when people didn’t show up for appointments, they were called to ask what had influenced them to drop out of care.

Through this study, investigators identified three main factors that influence care and retention with the university’s clinic:

  1. African-Americans are four times more likely to be nonregular users of care.
  2. Individuals with a history of drug use who either continue to practice substance abuse or who haven’t been sober for long are more likely to be nonregular users of care.
  3. People who are unemployed are 1.8 times more likely to be nonregular users of care.

"Using these three simple questions of race ethnicity, employment status, and years clean from substance use, we have a statistical formula to determine the probability of retention," Relf says. "In statistical terms, the model we’ve come up with is highly sensitive and highly specific."

Anyone entering the clinic who has a 75% probability of nonregular use of care is referred to the study, he adds.

Once referred, patients are assigned to a retention care coordinator who explains the study to them and discusses the services that will be available, and if the person agrees to participate he or she is assigned to the retention care coordinator for six or 12 months.

Investigators plan to enroll 256 clients total, evenly divided between the six-month and 12-month arms.

"Then we’ll follow up all 246 for 18 months after enrollment to look at retention, care, rates of hospitalizations, CD4 cell counts, and adherence to antiretroviral therapy," Relf says.

Teaching needed skills

During the intervention, the retention care coordinator will teach the patient health care skills, including helping them ask questions of their providers, he states.

"The retention care coordinators will chaperone them to the clinic," Relf explains. "If the provider tells a patient that his lipid panel shows this, then the retention care coordinator will say, I’m not sure I understand what a lipid panel is. Can you explain it to both of us?’"

This shows the patient that it’s OK to ask questions. Retention care coordinators also will meet with providers when necessary to help them improve the feedback they give to patients.

The program also will provide other services, such as giving patients assistance with child care or transportation when these are a problem at the time of a clinic appointment, he says.

"The retention care coordinator will call patients three days before to remind them of the appointment and to ask if they need any assistance with transportation or child care," Relf adds.

"One of the major challenges in many regions across the country is that money that used to exist to help people get back and forth to appointments no longer exists," he continues.

"So in this grant, we built in a small pot of money for barrier elimination, and the two biggest barriers for our clients are transportation and problems with child care," Relf explains

If clients are at high risk or don’t have access to a telephone, the clinic will send them a postcard reminder or someone will visit their home to remind them of the appointment.

"Our goal is to not wait one or two weeks," he says. "If you miss an appointment on Wednesday afternoon, we will start trying to contact you and all of the list of contacts you provide us to get you back into care on Thursday if need be."

Four program modules

Participants in the study intervention also will receive four modules in a health literacy program:

1. Scheduling and cancelling an appointment.

"So many folks who are coming to our clinic have never had access to regular preventative primary care," Relf says.

For instance, their typical way to handle their health care is to go to the ED if they wake up with a sore throat or just ignore the symptoms, he adds.

This module teaches them an alternative strategy of calling up an on-call nurse and scheduling an appointment to be seen at the clinic.

They also are taught to reschedule appointments when something comes up and they can’t make it.

And since some individuals will decide to skip their appointment if they are feeling well, they are taught that the goal is to prevent illness and complications, so they should make their appointment regardless of how they feel, Relf says.

2. Taking your medications.

"Many of our clients have ADAP [AIDS Drug Assistance Program] and Medicaid, but don’t know what ADAP means and what Medicaid entitles them to receive," he explains.

This module discusses their health coverage under ADAP and Medicaid and also focuses on how they can remain successful in taking their medications.

"Many times, I’ve had patients say, I just took my last pill and I need a refill,’ and here it’s 4 p.m. and the probability of successfully getting them a refill on their prescription is challenging," Relf notes. "So we want to teach patients that when you open the pill bottle and have a four- or five-day supply left, then it’s time to call for a refill."

The idea is to teach them to use their time wisely and, therefore, reduce the stress in their lives, he adds.

This module also covers the basics of whom they need to call to get their refill and what they should do if their pharmacy says they don’t have any refills remaining in their prescription.

3. Calling for after-hours answers.

This module offers suggestions for how to handle medication side effects and other health issues.

Often these patients will just go to the ED when they’re not feeling well even though their symptoms are an expected reaction to the medication, Relf says.

This module explains how patients can call an on-call provider and how to clarify their health complaint so the provider might help them decide whether it is an expected problem or something that requires immediate attention.

Also, since many patients use complementary therapies, such as family and cultural folk remedies, the session encourages them to discuss these with their provider, he says.

"There’s no reason to be ashamed if the folk remedy is one that’s successful for the patient," Relf adds.

4. Talking to your provider.

This last module is an empowerment module designed to teach patients the skills they need to ask their providers questions and to speak up when they don’t understand something the provider told them, he says.

"Many of us have been brought up to believe that you go to the appointment and the provider does all the diagnosing and question asking, and the patient answers," Relf says.

Through this session patients learn they can listen to their providers suggestions and then ask questions or make their own suggestions.

"The provider will say, This is what we’re going to do’ or This is what I recommend that we do,’" Relf says. "That’s when the patient says, What about this?’ Or, I’ve heard this is an option.’"

It empowers patients to give them the skills they need to ask questions or to say, "I’m not ready to start medications" or "It’s too hard for me to exercise three days a week," he explains.

The four modules will be delivered during the first three months of care in individual sessions with the retention-care coordinators, Relf says.

"With the modules we’re helping clients develop new skills to advocate and manage their own health care for the future," he says.