Public/private program boosts meds adherence

Study shows where to target state resources

A two-year-old Massachusetts HIV adherence initiative shows that when public and private health care professionals work together to convince patients to stay on their medications, the results can be promising.

The Massachusetts project involves 17 sites that use a variety of interventions to support HIV patients with taking their antiretroviral drugs. A survey of HIV patients at 14 of the sites showed that the percentage of people who took their HIV medication as prescribed over the previous week rose from 69% at baseline to 81% several months into the adherence program.

Also, the percentage of patients who said they had never missed their HIV pills increased from 15% at baseline to 19% in the follow-up survey. And the percentage of people who had missed their pills sometime within the past month decreased by 11%.

Massachusetts started the adherence program as a pilot study to see where the state should target its efforts and resources to increase HIV drug compliance, says Thera Meehan, MSW, MPH, assistant director of the policy and planning unit for the AIDS Bureau of the Massachusetts Department of Public Health in Boston.

"We’re trying to look at the bigger picture in Massachusetts, so we’re looking at the existing programs and will target resources where the service is best utilized," Meehan says.

The AIDS Bureau launched the adherence initiative in January 1997 in cooperation with the Community Research Initiative (CRI) of New England in Brookline, MA. The program is funded through state grants, which were used to develop separate adherence programs at 17 sites across the state. CRI is in charge of evaluating the success of the various programs through surveys.

"Medication adherence is crucial at this juncture in HIV treatment, given the complexity of the dosing requirements, people changing therapies, and the many other challenges that people are facing," says Julie Marston, MPH, executive director of CRI.

When CRI began to develop the program, there was little information about HIV medication adherence because protease inhibitors and the multidrug antiretroviral therapies were new.

"So we worked with people who were experts on medication adherence in cardiovascular, epilepsy, and other diseases," Marston says. "We learned that the more medications people are on and the more specific the medication requirements are, the more difficulty people have with taking the drugs, especially in the long term."

HIV drugs, especially the early ones, required multiple doses to be taken per day in conjunction with very precise food and water intake requirements. "People generally adhere to their medication regimens 50% of the time, and we know that’s not good enough with HIV," Marston adds.

Not a one size fits all’ program

The initiative has encouraged funding sites to design an adherence program that works best for their population. The sites have selected a variety of models, including peer support, pro vi der training, incentives, home visits, social case management, telephone support, check-in support, nutritional counseling, pharmacist support, medical visit escorts, and videotape education. (See story on adherence support models, p. 18.)

For example, the Boston Living Center, which has more than 2,000 HIV-infected clients, used a combination of strategies in its adherence program. These included peer advocates, who each had HIV and had mastered medication compliance; written educational materials in English and other languages; pill reminder tools; and check-in support.

The program targeted clients who said they had trouble taking their medication. The advocates delved into what barriers prevented clients from taking their medications and then developed reminder strategies. Advocates also took copious notes of their conversations with clients and reviewed those logs with a staff provider.

The peer advocates were a big success, says David Gaulin, RN, manager of the homestead program.

"We provided special training and had medical providers supervise the peer advocates," Gaulin says. "The reason it was so successful is the [HIV patients] were getting the same information they were getting in the clinic, doctors’ offices, and from pharmacists, but they received it at the living center, which is a comfortable setting, and they heard it from people who knew what it was like to take these pills."

Initially, the center hired 10 peer advocates who were expected to see five clients each. Now that most of the clients are adherent to their regimens, the center gets by with three peer advocates. The advocates, who are selected to reflect the population the center serves, represent different races and the disabled.

Peer advocates know better than anyone how difficult it is to remember to take HIV medications the third or fourth or even seventh time in a day, especially when patients have multiple doctor’s appointments to remember and work or family responsibilities, Gaulin adds.

The Boston Living Center also gives clients reminder devices, including pill boxes with alarms, vibrating pill boxes, and filled pill boxes.

These strategies had immediate success, Gaulin says. Center managers divided patients into two tiers: the first for clients who are either new at taking HIV drugs or are in the process of switching to new drugs, and the second for patients who have already shown they can be compliant with the medications they have been taking.

Peer advocates focus most heavily on the first-tier clients, giving them intensive education and support. They check in with second-tier clients on a sporadic basis. If a second-tier client begins to slip in taking medication, the client is bumped up to the first tier again.

Don’t forget to manage side effects

Side effect management is an important aspect of the adherence program, Gaulin says. "If they have a side effect, we show them how to alleviate symptoms."

Counselors might advise patients to make a diet change, or suggest HIV patients avoid certain over-the-counter medications that could make the symptoms worse. They also help clients simplify their medication regimens by educating them on less complicated therapies. But while the staff will educate clients and make suggestions, they are careful not to overstep clinical boundaries when making these suggestions, Gaulin adds.

"We taught people how to advocate for themselves and told them, It’s OK to tell your doctor if you can’t take pills five times a day,’" he says.

Each Tuesday, the Boston Living Center has a drop-in time for HIV patients. They receive a free meal and can learn more about their medications and meet with their peer counselors.

Gaulin says the peer advocate program has been an effective and inexpensive technique for increasing medication adherence. The only major concerns have been confidentiality issues and interference with providers.

"We did a lot of education about boundary issues and role clarification, and when you think about it, if you have 10 people who are not health care providers and who are not familiar with those boundaries, you can have problems," Gaulin says.

The center taught advocates about confidentiality, communication skills, role clarification, and verbal harm reduction, which means being aware of what they’re saying and how certain words can sound more judgmental than others. For example, instead of telling a client, "You failed on your meds," the advocate could say, "Your meds failed you."

Advocates spent one eight-hour day receiving education before they began to work and received refresher educational training at three months and at six months, Gaulin says. Plus, advocates met once a week for supervision with a nurse practitioner and hammered out strategies for working with particularly difficult clients.

CRI’s study of the adherence initiative provided state officials with a clear picture of what kind of barriers and social issues prevent people from being compliant with their HIV medications. "We found a great variety of different things get in the way of people taking medications," Marston says.

The CRI survey revealed that the No. 1 reason people didn’t take their medications was because they simply forgot. An HIV patient might have trouble remembering the evening dose because he or she goes out a lot at night and forgets to take the medications along, Marston explains. (See story on barriers to medication adherence, p. 19.)

Other causes are more complex. For example, an HIV patient might be on a drug that causes diarrhea. But if he or she has a daytime counter job that lacks access to a bathroom during the shift, the person might well avoid taking the drug.

"So we’ve tried to work with HIV-infected people to build trust and honesty with providers so they can tell their doctor about their situation and whether they are able to take different drugs that have the potential to have side-effect problems," Marston says. "This requires early training and teaching prior to the patients experiencing side effects."